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Szelag, Barbara J.
Growing up with hiv :
h [electronic resource] /
b disease management among perinatally infected adolescents
by Barbara J. Szelag.
[Tampa, Fla] :
University of South Florida,
Title from PDF of title page.
Document formatted into pages; contains 286 pages.
(Ph.D.)--University of South Florida, 2011.
Includes bibliographical references.
Text (Electronic dissertation) in PDF format.
ABSTRACT: Children born with HIV in the 1980s and 1990s are surviving into adolescence and adulthood, due to the availability of highly active antiretroviral therapy (HAART). Growing up with a chronic and stigmatized disease presents considerable challenges as young people explore their sexuality, develop relationships, and take steps to become independent and productive adults. Adherence to HAART is an essential and life-long practice for the maintenance of health and longevity. For adolescents born with HIV, a daily medication schedule is one aspect of disease management that also includes medical visits, HIV status acceptance, bouts of illness, and disclosure of HIV status to others. This research uses a framework of medical ecology to explore the personal, socio-familial, and medical contexts in which perinatally HIV-infected adolescents, as competent social actors, navigate the complexities of HIV disease management. It examines personal behaviors and attitudes, family dynamics, peer relationships, and health care structures and relationships that affect their adherence to HAART. A key finding of this study was increased agency and adaptation to HIV among adolescents who learned their diagnosis earlier in life and whose caregivers demonstrated acceptance of HIV and support for the adolescents. They were able to adhere to their medication regimens, despite busy schedules, non-disclosure to friends, and treatment fatigue, and also had a somewhat better understanding of the medical aspects of HIV and HAART. Yet all of the adolescents had gaps in their understanding of clinical indicators and viral resistance, and the relationship between adherence and HIV transmission. This deficit in a medical conceptualization and understanding of HIV and its ramifications is another important finding of this study. The adolescents' notions and actions regarding HIV disease, based on social, cultural, and medical norms and interactions within their environment, have a significant impact on the natural history of HIV. The level and consequent infectiousness of HIV as it responds to medications, mutates in their absence, and multiplies or is suppressed, depends on the individual's strict adherence to medications and attention to medical details, and affects HIV transmission to the individual's sexual partners. From both an individual medical and a public health perspective, an understanding of the ramifications of adherence and non-adherence to HAART is crucial. Early acceptance and understanding of HIV increase the possibility of successful medication adherence and overall disease management. In order to facilitate perinatally-infected adolescents' disease management and adherence to medications, it is recommended that the process of disclosure of HIV diagnosis to the child begin early so that the child is fully aware by the age of ten. The acceptance of HIV in the family and clear-cut roles and responsibilities for disease management should be facilitated by ongoing instruction and counseling. Adolescents should be given thorough, if basic, instruction on the medical aspects of HIV, and should be encouraged to have friends, and especially sexual partners, accompany them to their clinic visits. This will encourage greater understanding of HIV and perhaps lead to less stigmatization of HIV and those living with HIV. Finally, providers and adolescent patients should construct a partnership in which their individual models of disease management are integrated and power and responsibility are appropriately shared.
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Whiteford, Linda M
x Cultural Anthropology Public Health
t USF Electronic Theses and Dissertations.
Growing Up with HIV: Disease Management among Perinatally Infected Adolescents by Barbara J. Szelag A dissertation submitted in partial fulfillment of the requirements for the degree of Doctor of Philosophy Department of Anthropology College of Arts and Sciences University of South Florida Major Professor: Linda M. Whiteford, Ph.D. Julie A. Baldwin, Ph.D. Heide M. Castaneda, Ph.D. Stephanie L. Marhefka, Ph.D. Nancy Y. Romero-Daza, Ph.D. Date of Approval: March 8, 2011 Keywords: adherence, disclosure, medical anthropology, child health, chronic disea se Copyright 2011, Barbara J. Szelag
DEDICATION To my parents, Gladys and Daniel Szelag, who have redefined support and endurance. You have shown remarkable and loving acceptance of all of my adventures, quirks, tumbles, and choices, and have remained my rock. I kept at it because of you, and your love and encouragement made it happen and made it meaningful.
ACKNOWLEDGEMENTS I would like to express my appreciation to my doctoral committee, Julie Bal dwin, Heide Castaneda, Stephanie Marhefka, and Nancy Romero-Daza, whose diligent s crutiny during this process of research and writing guided me to produce a better piece of work. Linda Stephenson at the USF Pediatric Clinic was indispensable in the recruitment of the adolescents for this research. Thank you for your help, and thank y ou for your dedication to our pediatric patients. The FAN administrator, and my dear friend, Marylin Merida, has supported me in my struggles and shared in my triumphs for the last ten years. Your unwavering faith in my ability to complete this project successfully has been a priceless gi ft. I know few people who practice friendship with the integrity, grace, and constancy that you have. You have kept me sane and sanguine. I thank the mothers and clinicians who participated in my study with such forthrightness, and I extend special thanks to the adolescents who shared their experiences with me. I am hopeful that our collaboration will contribute to bette r services for adolescents and young adults with HIV. Finally, I reserve my deepest gratitude for Linda Whiteford, the first person with whom I shared my HIV diagnosis, and the teacher, advisor, friend, and ever-thoughtf ul listener who has stood by me through it all, and who must be thrilled (and relieved) to see me move on FINALLY. Your words of reason and confidence calmed my fears, clear ed my head, and kept me going at every turn. Thank you, Linda.
i TABLE OF CONTENTS LIST OF TABLES ...............................................................................................................v LIST OF FIGURES ........................................................................................................... vi ABSTRACT ...................................................................................................................... vii CHAPTER 1: INTRODUCTION ........................................................................................1 Research Rationale...................................................................................................1 Situating the Research..............................................................................................4 Perinatal HIV in the United States ...............................................................4 Perinatal HIV in Florida...............................................................................6 Research Participants and Methodology ..................................................................7 Purpose of the Research ...........................................................................................8 Research Site ............................................................................................................9 Research Questions ................................................................................................10 Research Hypotheses .............................................................................................11 Full Disclosure: Positionality and the Researcher .................................................12 CHAPTER 2: LITERATURE REVIEW ...........................................................................13 Chronic Stigmatized Disease .................................................................................14 Adolescence and Perinatally Acquired HIV Infection...........................................22 Meaning, Identity, and Agency ..................................................................23 Adherence to Medications .........................................................................28 Family Dynamics .......................................................................................32 Health Care Relationships..........................................................................34 Disclosure of HIV Diagnosis .....................................................................38 Anthropology and Childhood Studies ....................................................................44 General Conceptualizations .......................................................................46 Childhood Studies and Management of Chronic Stigmatized Disease .....49 Research Ethics: Ethics and Research with Children ............................................57 Medical Ecology ....................................................................................................63 CHAPTER 3: METHODOLOGY AND RESEARCH ETHICS.......................................72 Role of the Researcher: Reflexivity and Positionality ...........................................73 Florida Family AIDS Networks Perinatal Clients ................................................77 Study Participants ..................................................................................................79 Recruitment of Participants....................................................................................81 Sampling ...............................................................................................................82
ii Limitation of Recruitment Process ........................................................................85 Research Techniques and Data Collection ............................................................85 HIV-Positive Adolescents, N=17 ..............................................................87 FAN Data and Chart Reviews........................................................87 Questionnaires................................................................................87 Semi-Structured Interviews ...........................................................87 Clinical Care Providers, N=5 .....................................................................89 Semi-Structured Interviews ...........................................................89 Biological Mothers of Perinatally Infected Adolescents, N=6 ..................90 Focus Group ...................................................................................90 Data Analysis ........................................................................................................90 Study Limitations ...................................................................................................91 CHAPTER 4: RESEARCH RESULTS .............................................................................93 Adolescent Data .....................................................................................................93 Biological Mothers Focus Group .........................................................................96 Clinician Interviews ...............................................................................................96 Results ....................................................................................................................97 Adolescent Engagement, Provider-Patient Relationship, and Adherence (Hypothesis 1) ..........................................................................97 Adolescent Medical Knowledge ....................................................98 Medications ........................................................................98 Labs and Viral Resistance ................................................100 Provider Explanations of Medical Concepts....................102 Summary of Adolescent Medical Knowledge .................107 Adolescent Responsibility ...........................................................108 Timing of Responsibility .................................................109 Barriers to Responsibility ................................................113 Summary of Adolescent Responsibility...........................115 Non-Adherence, Treatment Fatigue, and Treatment Interruption ..................................................................................115 Summary of Adolescent Engagement ..........................................120 Provider-Patient Relationship ......................................................121 Summary of Findings for Hypothesis 1 .......................................128 Family Dynamics and Peer Relationships (Hypothesis 2) .......................129 Family Dynamics and Involvement .............................................129 Support and Openness: Valerie, Jeff, Katie, and Mark....129 Ambivalence and Silence: Zo, Diana, and Stephanie ....132 Effects of Stigma on Family Dynamics .......................................135 Peer Relationships and Support ...................................................136 Culture and Stigma in Peer Relationships .......................136 Sexual Relationships and Disclosure ...............................141 Clinicians Discussions of Sexual Behavior ....................145 Support from Other HIV-Positive Adolescents ...............148 Summary of Findings for Hypothesis 2 .......................................149 Disclosure of HIV Diagnosis to the Child (Hypothesis 3) ......................150
iii Profiles: Earlier Disclosure of HIV Diagnosis.............................153 Jeff, 16..............................................................................154 Paula, 13 ...........................................................................154 Katie, 22 ...........................................................................154 Nina, 17 ............................................................................155 Summary: Earlier Disclosure ...........................................155 Profiles: Later Disclosure of HIV Diagnosis ...............................156 Diana, 19 ..........................................................................156 Stephanie, 20 ....................................................................157 Sean, 20 ............................................................................159 Zo, 16 .............................................................................159 Summary: Later Disclosure .............................................160 Exceptions to Disclosure Age-Adherence Correlation ................161 Lucy, 19 ...........................................................................161 Keith, 18 ...........................................................................162 Rachel, 16 ........................................................................164 Challenges of Disclosure: Biological Mothers ............................165 Summary of Findings for Hypothesis 3 .......................................170 Health Status and Adherence: The Illness Role in Chronic Disease (Hypothesis 4) ..........................................................................................170 Summary of Results .............................................................................................172 CHAPTER 5: DISCUSSION ...........................................................................................175 Themes .................................................................................................................177 Disclosure of the HIV Diagnosis to the Child and Caregiver Attitudes ...................................................................................................177 Dominance of HIV as Social Phenomenon .............................................185 HIV as Chronic Disease: Meaning, Identity, and Agency .......................189 Disclosure to Peers ...................................................................................193 Peer Relations ..............................................................................193 Sexual Relationships ....................................................................195 Biomedical Implications and Provider-Patient Relationships .................197 Stigma: An Underlying Theme ................................................................200 Additional Factors Complicating Adherence.......................................................202 Unexpected Findings ...........................................................................................203 The Role of the HIV-Positive Researcher Revisited ...........................................206 CHAPTER 6: CONCLUSIONS AND RECOMMENDATIONS ..................................210 Conclusions ..........................................................................................................211 Recommendations ................................................................................................213 Suggestions for Future Research .........................................................................216 Coda .....................................................................................................................220 REFERENCES ................................................................................................................222
iv APPENDICES ......................................................................................................250 Appendix A: Adolescent Medication Questionnaire ...........................................251 Appendix B: Semi-structured Adolescent Interview Guide ................................254 Appendix C: Clinician Interview Guide ..............................................................256 Appendix D: Focus Group Protocol ....................................................................259 Appendix E: Codes for Analysis..........................................................................262 Appendix F: Graphs of Adolescent Viral Loads..................................................263 Appendix G: Graphs of Adolescent CD4 Counts/Percentages ............................269 ABOUT THE AUTHOR ....................................................................................... End Page
v LIST OF TABLES Table 3.1 FAN Perinatal Clients ................................................................................78 Table 3.2 Adolescent Participants ..............................................................................80 Table 3.3 Summary of Study Participants .................................................................84 Table 4.1 Study Participants and Adherence .............................................................95 Table 4.2 Adolescent Engagement and Adherence ...................................................99 Table 4.3 Adolescent Rating of Providers Understanding .....................................121 Table 4.4 Sexual Activity.........................................................................................142 Table 4.5 Age at Disclosure and Adherence ............................................................152 Table 4.6 Biological Mothers in Focus Group .........................................................166 Table 4.7 Study Participants Disclosure by Caregiver ...........................................169 Table 4.8 Early and Late Disclosure by Caregiver ..................................................169
vi LIST OF FIGURES Figure 1.1 Reported U. S. Perinatal AIDS and HIV Cases, 1985-2007 ........................5 Figure 1.2 Florida Pediatric Cases by Diagnosis Year ..................................................6 Figure 1.3 Age Distribution of Persons Living with Perinatal HIV/AIDS in F lorida ..7 Figure 2.1 Global Distribution of HIV/AIDS, 2009 ...................................................17 Figure 2.2 Persons Living with AIDS, by Ethnicity, United States, 2008 ..................18 Figure 2.3 Rates of Infection by Ethnicity, United States, 2008 .................................18 Figure 3.1 Current FAN Perinatal HIV and AIDS Clients..........................................79 Figure 4.1 Keiths Viral Load, 2008-2010 ................................................................117 Figure 4.2 Keiths CD4 Count and Percentage, 2008-2010 ......................................117 Figure 4.3 Seans Viral Load, 2008-2009 .................................................................117 Figure 4.4 Seans CD4 Count and Percentage, 2008-2009 .......................................118
vii ABSTRACT Children born with HIV in the 1980s and 1990s are surviving into adolescence and adulthood, due to the availability of highly active antiretroviral therapy (HA ART). Growing up with a chronic and stigmatized disease presents considerable cha llenges as young people explore their sexuality, develop relationships, and take steps to become independent and productive adults. Adherence to HAART is an essential and life-long practice for the maintenance of health and longevity. For adolescents born wit h HIV, a daily medication schedule is one aspect of disease management that also include s medical visits, HIV status acceptance, bouts of illness, and disclosure of HIV status to others. This research uses a framework of medical ecology to explore the personal, s ociofamilial, and medical contexts in which perinatally HIV-infected adoles cents, as competent social actors, navigate the complexities of HIV disease manageme nt. It examines personal behaviors and attitudes, family dynamics, peer relat ionships, and health care structures and relationships that affect their adherence to HAA RT. A key finding of this study was increased agency and adaptation to HIV among adolescents who learned their diagnosis earlier in life and whose caregivers demonstrated acceptance of HIV and support for the adolescents. They were able to adhere to thei r medication regimens, despite busy schedules, non-disclosure to friends, and treatm ent fatigue, and also had a somewhat better understanding of the medical aspe cts of HIV and HAART. Yet all of the adolescents had gaps in their understanding of clinical indicators and viral resistance, and the relationship between adherence and HIV transmission.
viii This deficit in a medical conceptualization and understanding of HIV and its ramifications is another important finding of this study. The adolescents not ions and actions regarding HIV disease, based on social, cultural, and medical norms and interactions within their environment, have a significant impact on the natural hi story of HIV. The level and consequent infectiousness of HIV as it responds to medications, mutates in their absence, and multiplies or is suppressed, depends on the individual s strict adherence to medications and attention to medical details, and affect s HIV transmission to the individuals sexual partners. From both an individual medical and a public health perspective, an understanding of the ramifications of adherence a nd nonadherence to HAART is crucial. Early acceptance and understanding of HIV incr ease the possibility of successful medication adherence and overall disease manageme nt. In order to facilitate perinatally-infected adolescents dis ease management and adherence to medications, it is recommended that the process of disclosure of HIV dia gnosis to the child begin early so that the child is fully aware by the age of ten. The accept ance of HIV in the family and clear-cut roles and responsibilities for disease management should be facilitated by ongoing instruction and counseling. Adolescents should be given thorough, if basic, instruct ion on the medical aspects of HIV, and should be encouraged to have friends, and especia lly sexual partners, accompany them to their clinic visits. This will encourage greater under standing of HIV and perhaps lead to less stigmatization of HIV and those living with HIV. Fin ally, providers and adolescent patients should construct a partnership in which their individua l models of disease management are integrated and power and responsibility are appropriately s hared.
1 CHAPTER 1: INTRODUCTION Research Rationale The development and availability of highly active antiretroviral therapy (HAART) have improved health and prolonged life for people infected with the human immunodeficiency virus (HIV). Children born with HIV in the 1980s and 1990s are now reaching adolescence and adulthood, something that was inconceivable before the adve nt of HAART and the highly effective class of drugs known as protease inhibitors. In fact, older children and adolescents are now the largest percentage of infected chil dren (CDC 2009). Growing up with HIV poses complex problems as young people begin to explore their sexuality, develop relationships, and take steps to become independent and productive adults. Adolescence is a life stage fraught with change, growth, e xcitement, and confusion, and the added complication of a serious, chronic, and stigmatized disease presents huge challenges for youth as they grow and mature personally a nd socially. Studies note that many HIV-infected adolescents have not been raised to learn the typical responsibilities of adolescence and adulthood, since more attention was given to making their presumably short lives as happy and carefree as possible (Wiener Mellins, et al. 2007; Battles and Wiener 2002). Since the odds of survival into adulthood have improved, it is now critical to consider the special medical circumstance s and social issues of young people HIV-infected since birth, in order to enhance their healt hy development.
2 Adherence to HIV medication regimens is an essential and life-long practic e for the maintenance of health and longevity. For adolescents perinatally infecte d with HIV, a daily medication schedule is one of many medical issues that also include regul ar medical visits, bouts of illness, developmental problems, acceptance of HIV stat us, and the ongoing decisions about disclosing ones HIV status to others. Living with a chr onic, stigmatized disease is such a big challenge that parents and other caregiver s often refrain from disclosing the diagnosis to the children for as long as possible. At the same ti me, as these children enter adolescence and begin to exercise independence and explore the ir sexuality, their need to be aware of and understand their disease intensifies Since perinatally infected youth are generally receiving health care regul arly, the health care setting is one venue in which their sexual health and development, responsible behavior, medication adherence, and disclosure of HIV status are addressed. Disclosure of status, both to an infected person and by an infected person to others, is a sensitive issue even for the individual who is equipped with the social, economic, and emotional resources to manage its consequences. For adolescents embarking on the exploration of relationships sexuality, and independence, the issues of disclosure, acceptance, and responsibil ity related to HIV can be heavy burdens that affect their health behaviors, including medication adherence. For perinatally infected young people, the development of autonomy, whether the emphasis is on separating from parents (loss) or on achieving independence (gai n) (Beyers et al. 2003), is a complex issue affected by the unexpected futures (Domek 2006: 1367) they now have, and by the efforts of parents to keep them from the normal trajectory of growing up and from the knowledge of their disease (Battles and W iener
3 2002). Autonomy as competence (Beyers et al. 2003) may also be challenged by a complicated family dynamic where one or more members are also HIV-infe cted and might die, or have died (Fielden et al. 2006). Knowing that AIDS has taken family members or severely burdens the family may affect how much the young person can believe in his own abilities to act, plan, and thrive (Steele et al. 2007:62). The identit yculture dialectic that defines adolescents presages their approach to dis ease management. Their responses, which are shaped by their socioculturally mediated capaci ty to act or agency (Ahearn 2001:112) in response to their HIV disease, become salient now that the y are moving from childhood toward adulthood. For perinatally-infected adolescents, this transition is complicated by the integration of an HIV identity from which they may, at times, distance themse lves because they do not want to be associated with adults who were infected through stigmatized behaviors (Kang et al. 2008). The contradictory discourse of the c hild (Brannen 1996:115) as, on the one hand, a dependent and incompetent individual whose agency is ignored and, on the other hand, a child who is expected and encouraged to comply with medical instructions, points to the need for approaching the child, and especially the adolescent, as a more active participant or partner in the undert aking of tasks and construction of meaning normally thought of as resting in the adult domain. The capability and level of participation or partnership in their health care must be evaluated for each adolescent. Maintenance of viral suppression has been problemati c in adolescents with behaviorally-acquired HIV, and points to the need to evaluate adolescents for treatment readiness (Dodds et al 2003:44; Merzel et al. 2008:984), and better prepare teens with HIV for the life-long, sometimes difficult medication regimens
4 (Murphy et al. 2005). Perinatally-infected adolescents, while accustomed to taki ng medications, may nonetheless require similar groundwork as they become aware of their diagnosis and take control of their medication regimens. Since the effect of livi ng with HIV since birth may be somewhat delayed maturity and treatment fatigue ( Merzel 2008), this groundwork may result in the adolescents taking control of her medications gradually or at an older age (Schwartz and Drotar 2006). Because adolescents with perinatally-acquired HIV have been prescribed antiretroviral therapy from an early age, they are likely to have some resi stant strains of HIV (Mullen et al. 2002). It is also possible that they were infected with a re sistant strain carried by their mothers (Delaugerre et al. 2007). An additional, important di stinction of HIV, among other chronic conditions, is that it is an infectious disease, and can be infectious even during long symptom-free periods. Moreover, the antiretroviral drugs are very unforgiving if not adhered to strictly (Fisher et al. 2006). For these reason s, adherence is extremely important; it makes a lower viral load and thus reduce d risk of HIV transmission to sexual partners more likely, and it also reduces the ris k of further resistance to the adolescents current and future regimens. The adolesc ents HAART and viral resistance history notwithstanding, it is of utmost importance for these a dolescents to understand and practice good adherence, both for their own health and for current and future sexual partners. Situating the Research Perinatal HIV in the United States In the United States, fewer and fewer babies born to mothers with HIV are themselves HIV-infected, due to more widespread HIV testing of pregnant women and
5 the administration of antiretroviral therapy to mothers and babies (Buchanan and Cunningham 2009). Figure 1.1 shows the increase and decrease of perinatal AIDS cases from 1985 to 2007 in the United States. With the advent of combination antiretroviral therapy and the development and availability of new medications, more reported c ases were presenting as HIV-infected, having not progressed to AIDS. For this reason, the CDC began reporting HIV cases separate from AIDS cases in 1998, though the HIV numbers represent only those states that had instituted HIV case reporting (CDC 1998). Figure 1.1 Reported U. S. Perinatal AIDS and HIV Cases, 1985-2007 Slide Source: cdc.gov As of 2008, about 8,500 perinatal AIDS cases have been reported in the United States (CDC 2008). As of 2007, there were about 7,550 perinatally infected individuals believed to be living with HIV/AIDS (CDC 2008). Of these persons with HIV or AIDS, about one-third were under 13 years old (CDC 2008). Many of them are now expected to survive through adolescence and into adulthood. Thus, an understanding of how
6 perinatally-infected children and adolescents cope with HIV as they mature continues to be important for those providing services to them. Perinatal HIV in Florida In Florida, perinatal HIV infection rates have followed national trends. Figur e 1.2 shows the cases of perinatal HIV/AIDS in Florida from 1977 to 2008. The perinatal transmission rate in Florida is now below 2% (FDOH 2009). Through 2009, there was a cumulative total of 2,356 perinatal HIV/AIDS cases in Florida, of which 76% were Black, 13% were Hispanic, and 9% were White (FDOH 2009). 0 50 100 150 200 2507779818385878991939597990103*050709Year of BirthNumber of Cases Perinatal HIV/AIDS Cases by Year of Birth REPORTED in Florida, regardless of Place of Birth 1977-2009**(N=2,356) Birth#% change2001 45 2002 21-53% 2003 210% 2004 18-14% 2005 17-6% 2006 16-6% 2007 176% 2008 11-35% 2009 8-27% Note:These data represent a 97% decline in HIV-perinatally infected births from 1992 (N=210 ) to 2009 (N=8)* Includes all perinatal HIV/AIDS cases diagnosed in Florida, regardless of place of birth. **HIV Infection Reporting began July, 2007. 2009 d ata are provisional. Data as of 09/30/10. Figure 1.2 Florida Perinatal Cases by Diagnosis Year Slide Source: FL Dept. of Health The increased life expectancy of person with HIV/AIDS is evident in the perinatally-infected cohort, among whom there are now individuals nearing 30 yea rs of age. At the same time, there are currently between 550 and 600 children under the age of 13 living with perinatally acquired HIV in Florida. Figure 1.3 shows the distribution of 1,475 persons living with perinatal HIV or AIDS in Florida through 2009. Through
7 8/31/10, there were 1,479 persons with perinatal HIV/AIDS presumed to be living in Florida (http://www.doh.state.fl.us/disease_ctrl/aids/trends/msr/2010/MS R0910.pdf). 0 20 40 60 80 100 120 140 012345678910111213141516171819202122232425262728293 031Age of Living Perinatal CasesCases HIV AIDS Current Age Distribution* Of Persons Presumed to be Living With Perinatal AIDS or HIV (n ot AIDS) Born through 2009, Florida, (N=1,475) *Current age of presumed living (not known dead) HI V/AIDS perinatal cases born through 2009. Data as of 09/30/10 Figure 1.3 Age Distribution of Persons Living with Perinatal HIV/AIDS in Florida Slide Source: FL Dept. of Health Research Participants and Methodology The participants in this research study were recruited from the Florida Family AIDS Network (FAN), a federally-funded program which targets and provides clinical and social supportive services for women, infants, children, and families infected and affected by HIV/AIDS. Seventeen individuals were enrolled from among the per inatallyinfected adolescents aged 13 to 24 in FAN. A semi-structured interview was conducted with each adolescent, who also completed a short medication and adherence questionnaire. In addition, one focus group of biological mothers of infected children was conducted, and five clinicians who provide care to children and adolescents in FAN were interviewed. Qualitative studies of medication adherence among people with HIV are underrepresented in the adherence literature (Beusterien et al. 2008; Sankar et al 2006).
8 The qualitative methodology used in this study of adolescents with perinatallyacquired HIV is an acknowledgment of the complexity of young peoples lives, and the methods employed allowed a range of questions to be posed not just what a person does, but why, how, where, and when (Lehoux et al. 2006:2092). This qualitative research allowed the young people to express themselves on issues that were of extreme impor tance to their lives and their health. The studys focus on the perinatally-infected adolescent in his or her social and cultural environment is embedded in the theoretical frameworks of medical ecology and childhood studies. Medical ecology places the individual at the center of proximal and more distal contexts that interact with each other and variously influence th e individual (Steele et al. 2007). The proximal niche has direct effects on the childs agency, m eaning making, and behaviors, and childhood studies focuses on children as independent members of culture and society, with their own subculture and capacity to formulat e meanings during their interactions within this subculture (Bluebond-Langner a nd Korbin 2007). Purpose of the Research Adolescence is the stage at which individuals begin to explore their sexuality and independence. Perinatally-infected HIV-positive adolescents are becoming sexually active and assuming greater responsibility for their disease managem ent. Many adolescents with HIV are not engaging in safer sex and strict medication adherenc e, and this combination can increase the risk of HIV transmission to sexual partners ( Letourneau et al. 2010; Quinn et al. 2000). In addition, adherence interruptions or medication refusal increases the risk of viral resistance and poorer health outcomes.
9 This research was designed to explore the personal, socio-familial, and cli nical contexts in which perinatally infected adolescents navigate the complexities of living with HIV as they move toward adulthood and physical and emotional maturity. In particular, the study examined adolescents medication adherence, and identified, compared, and analyzed personal behaviors and attitudes, family dynamics, peer relationships, and health care structures and relationships that affect thei r ability and willingness to comply with the instructions of their antiretroviral medicati on regimens. These findings were used to propose measures that adolescents and their caregivers, medical practitioners, social service providers, and others in the adolescents medical/ecological environment could implement to improve the health-relat ed behaviors of adolescents. Recommendations for addressing the support, coping, and care of pare nts and other caregivers, the procedures and interactions of health care encounters, pol icy making, and ancillary service delivery were also proffered as a result of the findings of this study. Research Site The perinatally infected adolescents who participated in this research s tudy were enrolled in the Florida Family AIDS Network (FAN), a program funded by a Rya n White Treatment Extension Act federal grant and administered at the Univers ity of South Florida College of Public Health. This grant targets women, infants, children, and families infected and affected by HIV/AIDS, and funds primary and specialty HIV care at five clinical sites and social supportive services at two case manage ment agencies in the Tampa Bay area. The study participants were either patients at one of the clinics or received services at one of the case management agencies, and were specifi cally recruited
10 at the University of South Florida Pediatric Clinic in Tampa, Tampa Hillsborough Action Plan in Tampa, or AIDS Service Association of Pinellas in St. Petersburg. Currently, FAN serves 163 clients with perinatally acquired HIV. Of these 130 are between the ages of 13 and 24, and are categorized as adolescents. At the time of t his study, 90 of these adolescents were receiving their care at the USF pediatric clinic, where the majority of the study participants were recruited. Two physicians and thr ee nurse practitioners provided the clinical care for these adolescents, and they were interviewed for this study. Adolescents also had access to the services of a nurse educator, soc ial worker, medical case manager, and licensed clinical social worker at this cli nic. Research Questions Since it is essential that perinatally infected adolescents, like all indivi duals with HIV disease, follow a strict medication regimen to ensure continued health and survi val, this study focused on adherence and its meaning in HIV disease management. The relationships between adherence and viral load and between viral load and HIV transmission risk also compelled an examination of adolescents perceptions of ri sk with regard to sexual behavior. Therefore, the two primary research questions that this research addressed were: Question 1 : What factors obstruct or promote medication adherence for perinatally-infected adolescents? What cultural and social factors influe nce their decisions about adherence? Question 2 : How do perinatally-infected adolescents perceive adherence to their medication regimens?
11 A secondary area of inquiry involved adolescents current and future sexual relati onships and activity, and shapes the third research question: Question 3 : How do perinatally-infected adolescents conceive of and situate sexual activity and sexual relationships within their HIV diseas e management? Research Hypotheses The theoretical framework of medical ecology demands that the research questions be contextualized within the personal, social, cultural, and medical environments of the participants, and these contexts are assumed to have an impact on adherence behavior and sexual risk-taking behavior. Thus, the hypotheses that this s tudy tested were: H1 : The active participation of the adolescent in his or her health care and treatment plan, and the level of trust in his or her health care providers have an influence on the adolescents understanding of the importance of adherence and his or her acceptance of adherence responsibility. H2 : The lack of family stability (e.g., loss of parents or siblings to HIV) and peer support adversely influences adolescents adherence. H3 : The timing and circumstances of disclosure to the individual have an impact on their subsequent adherence behavior. H4 : Health status has an influence on an adolescents adherence. Very healthy or very ill individuals are more likely to stop taking their medicine, or to take it sporadically.
12 Full Disclosure: Positionality and the Researcher This research was undertaken by an individual who shares the HIV diagnosis with her participants. My HIV-positive status was the motivating force behind my i nterest in and focus on HIV/AIDS in my academic and professional work. While my experience with HIV and disease management, from transmission risk and diagnosis to adherenc e and disclosure, has been different from that of the adolescents with perinata lly-acquired HIV in this study, it was important to recognize my position of commonality w ith them regarding living with an incurable disease and attending to a daily medication r egimen. My position as an HIV-infected individual allowed me to move into their HIV experience and back again into my researcher position, but it also had the potential to influence the relationships, analysis, and recommendations that were part of the research pr ocess. While it was not my intention to insert my experience and HIV identity into the re search, I did remain cognizant of the standpoint from which I approached the research (Hendri ck 2000). It seemed fair to allow both the study participants and any readers of t he final research product access to this knowledge.
13 CHAPTER 2: LITERATURE REVIEW HIV disease has become a chronic condition with the introduction and availability of highly active antiretroviral therapy (HAART). Like most chronic health conditions, HIV disease entails management that is life-long and physically, emot ionally, economically, and socially burdensome. Added to these challenges is the continued stigmatization of HIV and its sufferers. For young people with perinatall y acquired HIV, the ongoing and sometimes difficult medical management of the disease is couple d with the physical, cognitive, and social development of childhood and adolescence, which effects a challenging lived experience for the children themselves as well as for their families. The role of anthropology in the study of HIV and AIDS has long been recognized in the development of analytical perspectives which transcend conventional hostvector epidemiology (El-Bayoumi and Morsy 1993:1). Anthropologists have engaged in research aimed at elucidating the meaning of AIDS in particular cultural contexts (Marshall and Bennett 1990) and the subjective experience of AIDS in different soc ial and cultural environments (Alcano 2009; Whyte 2009). As HIV disease has evolved into a chronic condition in which individuals can experience long periods of good health, anthropological examination of the sick role (Crossley 1998) and clinician and pati ents differing chronic illness models take on added significance (Hunt and Arar 2001; Sobo 1999). For the perinatally infected children now entering adolescence and young adulthood, these constructed models of HIV disease, which encompass infectiousness,
14 prevention, and transmission, as well as ongoing care and treatment adherence, bec ome salient as they endeavor to exercise agency as independent actors, especial ly in their intimate relationships (Hay 2010; Fernet et al. 2011). Chronic Stigmatized Disease While most chronic illnesses or conditions can be difficult to manage, due to their life-long and limiting sequelae, an illness, disability, or other condition that is chronic and also stigmatized can be demoralizing, and may require additional resources for effective management. It not only causes suffering in individuals with many different heal th conditions or disabilities, but it is complicit in reducing the effectiveness o f the public health system in addressing and containing certain diseases, including AI DS (Van Brakel 2006: 307). There are many health conditions that, judged at the social level, impose a spoiled identity upon the sufferer (Goffman 1963), such as Hansens Disease (lep rosy), epilepsy, AIDS, and various types of mental illness (for a review of the stigma of these and other conditions, see Van Brakel 2006). Numerous studies have been published on these conditions, and have enumerated the specific social obstacles that result fr om bearing the stigma of the disease. The inferior, disgraceful, or unacceptable qua lities of a person with a stigmatized condition have been examined at an individual and micro-social level, which reveals the effects on and responses of the stigmatized in dividual (Link and Phelan 2001:366), but others have emphasized the social and cultural determinants of stigma (Kleinman et al. 1995; Link and Phelan 2001). Studies of the lived experience of the sufferer in his or her social and cultural environment emphasiz e both the varied manifestations of stigma and the interactionist and contextual underpinnings of stigmatizing attitudes and behavior (Moneyham et al.1996). It is cr ucial
15 to understand these influences on the lived experience of stigma in order to address t he health-related responses that may stem from the stigma people feel or fe ar. Stigma has been attached to a wide variety of actions and conditions other than illness (Link and Phelan 2001:363-4), but it has been extensively directed at a large a nd changing group of illnesses and disabilities over time (Sontag 2001; Van Brakel 2006). The attributes of, reactions to, and outcomes of the stigmatized condition have gener ally been negative, constraining, and segregating, both to the sufferers and to the social act ors around them. There are typically four attributes that define a stigmatize d condition: 1) the individual is responsible for his or her condition; 2) the condition is unchangeable or fatal; 3) there is a danger of contagion; and 4) the condition is apparent to others (Herek 1999:1105-6). While the latter three attributes have lost some legitimac y since the advent of highly active antiretroviral therapy (HAART), the first conti nues to have potency for people living with HIV (Lekas et al. 2006:1172). The responses to stigma by the sufferers, particularly due to the cultural ide as of blame, punishment, immorality, taboo, and sin (Douglas 1991; Kopelman 2002; Nack 2002) that attach to their conditions, range from moral anxiety, guilt, and shame (Das 2001) to secrecy, denial, and isolation (Herdt 2001; Scambler 2009). The outcomes of these responses have personal and public health implications, which include ignoring prevention messages, delaying health care, developing other complicating conditions (opportunistic infections, depression, etc.), refusing to adhere to medication regim ens, and increasing the chances of spreading disease (Carr and Gramling 2004; Weiss et al. 2006), in addition to the socio-political consequences, such as discrimination, exclusion, and violence (Herdt 2001; Nicolas and Schilder 1997). In addition to the effects of
16 stigma on those suffering from such conditions, stigmatizing attitudes can prevent the larger society from seeking health advice, practicing safe behaviors, and impor tantly in the case of AIDS, getting tested (Valdiserri 2002; Heijnders and Van Der Me ij 2006). While the focus of my research was on individual disease management, it is important to recognize that stigmatized diseases like AIDS have their root s in social structures of inequality and marginalization, and the unequal distribution of power (Farmer 1999; Lekas et al 2006; Parker and Aggleton 2003; Scambler 2006). In particular, the view of AIDS from its beginnings in the early 1980s has been one of a disease of outsiders and/or the powerless, invoking responses of us versus them, (Devine et al. 1999; Gilmore and Somerville 1994), in which AIDS does not concern the dominant, powerful majorities, but rather particular marginalized groups. The views of the powerful center maintain the social norms that stigmatize certain gr oups and certain conditions. Tewksbury and McGaughey refer to stigmatization as a metaphoric al vaccine (Tewksbury and McGaughey 1997:53) since it is seen as metaphorically removing or destroying its source (Gilmore and Somerville 1994:1342). It is als o conceived as an act of symbolic violence that reinforces the existing unequal s ocial structure (Lekas et al. 2006:1166). In general, health is an important component of ones identity, and is sustained in part through the creation of unhealthy others, who are separate and dangerous (Crawford 1994). This attitude and the results of this social structure find their way into the identities and actions of those afflicted (Ci ambrone 2003) and also into the relationships of stigmatized individuals with health care provider s and with other institutional agents (Taylor 2001). The stereotypes associated wi th
17 stigmatized conditions are internalized by both the stigmatized and the stigmat izing (Fife and Wright 2000; Lekas et al. 2006: 1184). The global distribution of HIV infection is heavily skewed toward the poorer nations (Parker 2002) and in the United States, HIV has disproportionately affec ted marginalized (Holtgrave and Crosby 2003) and minority populations, particularly African Americans (Oramasionwu et al. 2009). Globally, 90% of HIV/AIDS cases occur in the less developed nations, most in sub-Saharan Africa, where 80% of AIDS-related dea ths have occurred (Bancroft 2001). Figure 2.1 shows the distribution of HIV/AIDS globally In the United States at the end of 2007, African Americans accounted for almost half of all people living with HIV and 45% of new infections in 2006 (CDC 2010). Figures 2.2 and 2.3 illustrate the ethnic distribution of HIV/AIDS and rates of infection in the United States. Figure 2.1 Global Distribution of HIV/AIDS, 2009 Source: who.int 68% 1% 12% 2% 4% 1% 4% 3% 5% 0.2% Global HIV/AIDS by Region, 2009 Sub-Saharan Africa Middle East & North Africa South & S.E. Asia East Asia Central & S. America Caribbean E. Europe & C. Asia W. & C. Europe N. America Oceania
18 Figure 2.2 Persons Living with AIDS, by Ethnicity, United States, 2008 Source: cdc.gov The figure below illustrates the disparity in HIV infections among ethnici ties by showing the rate of infection in each ethnic population. Figure 2.3 Rates of HIV Infection by Ethnicity, United States, 2008 Source: cdc.gov 0.4% 1% 44% 20% <0.1% 34% 1% Persons Living with AIDS, by Race/Ethnicity, United States, 2008 American Indian/Alaska Native Asian Black/African American Hispanic/Latino Native Hawaiian/Other Pacific Islander White Multiple Race 0 100 200 300 400 500 600 American Indian/Alaska Native Black/African American Native Hawaiian/Other Pacific Islander Multiple Races 74.2 Asian 36.4 560Hispanic/ Latino 200.6 100.4 White 81.8 140.3 Rates of HIV Infection by Ethnicity Rate per 100,000
19 The genesis of this disproportionate burden of HIV in communities of color, and in particular, among African Americans, has been traced to a combination of fac tors that embed HIV risk in social, economic, and environmental structures (Lane et al. 2004) Residential segregation and high rates of incarceration have led to conditions in whic h concurrent sexual partnerships are common and womens power to negotiate their relationships may be diminished (Lane et al. 2004). This social organization increa ses the chances of HIV transmission. Disparities in health insurance coverage and a ccess to health care have also been implicated in higher rates of HIV in certain ethni c communities (Chu and Selwyn 2008). Finally, social capital and income inequality h ave also been correlated with rates of HIV, where more social capital is asso ciated with lower HIV rates and greater income inequality is associated with higher HIV rates (Holtgrave and Crosby 2003). Social capital has been variously defined and measured, but is essentially resources and benefits that result from social cooperation (Hol tgrave and Crosby 2003; Beaudoin 2009). The benefits of social capital to health, however, have been shown to be mediated by income, and are significantly diminished among low-income Blacks (Beaudoin 2009). Thus, it is crucial to recognize and examine underlying socioeconomic conditions and their effect on health outcomes, including HIV transmission rates. The social structural barriers to a good quality of life, parity in health care and dignified treatment have led many with stigmatized CHC to challenge the st atus quo and foster the integration of their illness into their identity, undergo a transforma tion of ideals, and embrace a positive meaning of their condition in their lives (Thorne and Paterson 1998:175). The responses of stigmatized individuals are thus varied, depending
20 on their particular circumstances and possession of social and economic capital and are shaped by the relative power of the stigmatized and the stigmatizer (Li nk and Phelan 2001: 380). The responses are personal and political, in that they are aimed at adapting t o the personal circumstances of illness as well as resisting and challengin g the societal norms that have made certain conditions moral and social burdens (Anspach 1979; cited in Taylor 2001). Many works have moved toward an examination of the opportunities for positive change, empowerment, transformation (Aujoulat et al. 2008; Mohammed and Thombre 2005; Farber et al. 2003; Baumgartner 2002), and more optimistic analytic frames that allow the person to maintain an unspoiled identity and anticipate a mor e affirmative future (Thorne and Paterson 1998:175). The theoretical perspective of chronic illness as a biographical disruption (Bury 1982) has been redirected in m any studies toward thinking of chronic illness as more biographically integrative and adaptive (Carricaburu and Pierret 1995; Farber et al. 2000; Baumgartner 2002). Chronically ill people who are able to move beyond stigma and adapt to their illness can reconcile themselves to its presence and regain a healthy sense of body and self (Charmaz 1995). Whether a chronic illness and its associated stigma are seen as threats or as opportunities, upon diagnosis or upon disclosure (in the case of HIV-infected children), people must confront this permanent presence in their lives. While they as individuals construct the meaning of their illness or disability, the meaning and the ensui ng new illness identity, indeed any identity, is shaped by external or social inter actions (Kralik et al. 2003:13), both past and present social processes (Fife 2005:2132). The incorporation of the illness identity has different effects on the lived experie nce and sense of self of the individual, and the identity can take different forms (Baumgartne r 2007).
21 The illness identity may be paramount and embraced (Baumgartner 2007:920); it may be socially disruptive and require a renegotiation of identity status with others (M athieson and Stam 1995). Some individuals will be their illness and others will consider the illness just one part of who they are (Bartos and McDonald 2000). The new identity may be maintained, altered, denied, suppressed, or surrendered to, but adaptation is considere d a necessary part of coping with the condition and ensuring a quality of life and healt h (Charmaz 1995). The particular response to the chronic stigmatized disease is determined by the social and cultural context of the individual, and the meaning that he or she attaches to the illness and the particular mode of incorporation of illness into hi s or her identity will determine how he or she will manage the everyday aspects m edical, social, personal of the disease (Bartos and McDonald 2000). It is important to exa mine the factors that allow and facilitate the incorporation of the illness identi ty and the adaptation process in ways that promote a positive outlook in the present, one that allows for the realistic anticipation of the future through the setting of goals (Schw artz and Drotar 2006). The variation in adaptive measures taken toward the presence of a chronic dise ase necessitates an exploration of the variation in the cultural context of the individual and in the social environment in which he or she acts and interacts. The cultural conte xt, including the beliefs and norms surrounding illness, influences the particular mea ning that a person develops and attaches to his or her illness (Fife 1994:310). An understanding of the particular sociocultural variables which encourage and suppor t found meaning, that is, a positive explanation that reconciles the world view and the self view (Thompson and Janigian 1988, cited in Fife 1994:310), is important for
22 disease management, since it is the adaptation to and acceptance of the chronic condit ion that facilitates the fulfillment of ongoing medical requirements, includin g regular medical visits and adherence to medications and other medical directives. The discovery of meaning and the incorporation of the illness identity, however that is manifested, i nto the self, are tasks requiring effort that may be especially challenging for adolescents, since they are developmentally at the point where they are grappling with the ident ities that will constitute their adult selves. Adolescence and Perinatally Acquired HIV Infection Perinatally-infected adolescents are embarking on a new phase both in their li ves and in the trajectory (Alonzo and Reynolds 1995:303) of their disease. Though they have lived their entire lives with an illness that requires frequent medical vi sits and daily medication, many of them are just learning their diagnosis as they enter a dolescence. For these adolescents, the ill self is habit (Charmaz 2002), but the HIV-positive self i s not. While perinatally-infected youth are familiar with illness, that is, t he lay experience of being sick, it is only upon disclosure that they are really able confront their dise ase as a clinical phenomenon (Kleinman et al. 1978). This knowledge will then change the illness experience. This new information, as well as the new phase of adolescence, el icits responses to the illness: making sense of their disease (meaning making), inte grating an HIV identity into their emerging adult selves, and exercising agency as increasingly independent persons. With this new knowledge, they confront the cultural definitions of HIV and AIDS, which now pertain to them. They must embark on a quest to discover what HIV means to them, and in a culture where the definition of AIDS provokes stigmatizing associations and labels (Kang et al. 2008; Rao et al. 2007 ), the quest for
23 meaning, identity, and agency may be arduous and psychosocially demanding (Battles and Wiener 2002; Dodds et al. 2003; Kang et al. 2008). Meaning, Identity, and Agency Meaning making, identity development, and agency all occur within the context of peoples cultural systems, which in turn are human creations, continually recr eated and reimagined by individuals with diverging experiences and motives (Buckser 2008: 168). Meaning is an individual dynamic construction that is embedded in the persons particular social and cultural context (Fife 1994:315; Thorne 1999:400), so the ill person may assign different meanings to the illness as his or her experience vari es in changing contexts. The meaning of illness refers to the individuals unique perceptions of the world as they know it and the ways in which they perceive the [illness] event redef ining their world, their place in that world, and therefore their personal identity (Fif e 2005: 2133). Fifes (1994:311) schema of meaning construction in the face of illness integrate s these questions of meaning, identity, and agency which individuals face when they lear n they have a serious illness, and she further argues that meaning comprises tw o conceptualizations, self meaning and contextual meaning, which are dialecti cally related (Fife 1994) and allow individuals to situate their illness experience in a contex t that gives their illness identity and social situation integrity. Fife (1994; 2005) is cited in some detail because her conceptualization of meaning in illness provides a framework for attaching meaning to the illness both as personal, lived experience and as socially and culturally constructed event. The personal meaning becomes the basis for the establishment of a new, added, or changed identi ty, and this meaning is influenced by the meaning attached to the condition in the wider
24 sociocultural context. Further, if we conceive of culture as shifting rather t han static (Taylor 2007), then it not only influences but is influenced by the personal meanings and lived experience of its members, as they go about the remaking of moral mea nings and the reframing of the ontology of suffering (Kleinman et al. 1995:1321). This dialec tic may be particularly salient in the case of highly stigmatized conditions, like AIDS, as members of a social and cultural community assume a flawed identity (Hos ek et al. 2002:356) because of stringent negative cultural definitions and connotations, but may then contest the outsider status that this identity imposes in an effort to foster cultural change and resume normal, accepted membership status. The meaning of a chronic, even stigmatized, condition can be positive or negative, and is unique to the individual, conditioned as it is by personal attributes, social factors, and experience (Kang et al. 2008:232). Since the factors influencing mea ning making are variable, meaning can change (Thorne 1999). For adolescents with perinatally-acquired HIV, the factors that shape the meaning of HIV, in addit ion to stigma, include the life-long nature of their illness, the time and manner of disc losure, the secrecy and fear surrounding the illness, the burden of HIV on other family member s, family loss, social capital (Sawyer et al. 2007:1485), delayed development, econom ic and other social problems, and membership in or association with marginalized populations (Domek 2006; Fielden et al. 2006; Hosek et al. 2005; Kang et al. 2008; Ledlie 2001; New et al. 2007; Rehm and Franck 2000). The coalescence during adolescence of culture, identity formation, and the onse t of autonomy will have a marked effect on how HIV-infected adolescents manage thei r disease. Culture describes not only the beliefs and values that are attached to he alth and
25 illness in general and to HIV in particular, but also to the symbolic interactions t hat the adolescents engage in with peers, family, community, and health care system. I dentity includes, in addition to a myriad of roles vis--vis others, the HIV/AIDS identity (Baumgartner 2007), because HIV disease will always be a part of the adolesc ents life. How the person integrates this disease identity will have an impact on how he or she responds to the medical factors involved in lifelong disease management adherence disclosure, illness episodes, medical routines, and overall attention to healthy li ving. The development and incorporation of the illness/disease identity also has implications for psychosocial wellbeing. For any adolescent, the construction of meaning and identity is novel and potentially confusing. For the adolescent with HIV, as with other chronic illness es, identity development can be negatively impacted by the illness (Hosek et al. 2002). Perinatally-infected adolescents nearing adulthood have been shown to have difficul ty with their HIV identity because they do not want to be associated with the adults w ho were infected behaviorally through stigmatized behaviors such as drug use or homosexual activity (Kang et al. 2008). The denial or avoidance of the HIV identity i s one of the stages of the developing adolescent identity, where one has not explored, acknowledged, or accepted the HIV identity as part of the self (Hosek et al. 2002). The individual at this stage of identity development, when he or she has not yet adjusted to the illness identity, manifests a coping strategy that is emotion-cente red (LeBlanc et al. 2003), whereas adolescents at the other end of this identity development continuum exhibit problem-centered coping (LeBlanc et al. 2003), and have reached an accept ance of their HIV identity that allows them to think more about the future (Hosek et al. 2002).
26 Denial or avoidance coping has been shown to have negative consequences on both physical and mental health among adults, adolescents, and children with chronic illne ss (Dahlbeck and Lightsey 2008). It is also important to note that the illness identity may be more salient at certain times. As with adults, adolescents find that their illness, as well as their li fe experience in general, takes center stage at certain times and fades into the background a t others. Patersons (2001) metastudy of chronic illness experience, revealed that ill ness and wellness perspectives can and do switch places, with illness coming to the fore a s a result of mitigating medical or social circumstances. When the circumstances c hange, the wellness perspective may shift forward. Whether the illness or the wellness pe rspective dominates any given time depends not only on aspects of the illness, but also on the salience of socioecological circumstances, such as poverty, racism, violenc e, family problems, and stigma (Kang et al. 2008). Adolescents with perinatal HIV have shift ed between periods of illness and periods of wellness throughout their lives, but it is during adolescence that their psychosocial, developmental, medical, and family changes will affect their own approach, not their caretakers approach, to their illness. The s hifting perspectives of illness/wellness during the confusing time of adolescence i nfluence the decisions that these young people are now beginning to make for themselves. This shifting identity will have implications for whether, when, and how adolescents compl y with medical directives, including medication adherence, discussed in greater detail below. For perinatally infected young people, the development of autonomy is a complex issue affected by the unexpected futures (Domek 2006:1367) they now have, and by
27 the efforts of parents to delay the normal course of growth and maturity as well as knowledge of their disease (Battles and Wiener 2002). Autonomy as competence (Beyers et al. 2003) may also be challenged by a complicated family dynami c where one or more members are also HIV-infected and might die, or have died (Fielden e t al. 2006). Knowing that AIDS has taken family members or severely burdens the family m ay affect how much these young people can believe in their own abilities to act, plan, and thrive (Steele et al. 2007:62). The identity-culture dialectic that defines adolescent s presages their approach to disease management. Their responses, which are shaped by t heir socioculturally mediated capacity to act or agency (Ahearn 2001:112) in re sponse to their HIV disease, become salient now that they are moving from childhood toward adulthood. Ahearns pared down and direct definition of agency fits well with adolescents whose independent actions and the reasoning behind them are now taking shape. The cultural influences around them contribute to their construction of the meaning of HI V and to the identity they are developing in the face of this chronic, stigmatized dise ase. These influences, coupled with the particular HIV identity that has emerged, will determine the types of actions they take in dealing with their disease. Two of the more problematic areas of the adolescent experience of living with a chronic c ondition are the social stigma attached to their condition and anticipating and preparing for the future (Kang et al. 2008; Rehm and Franck 2000: Schwartz and Drotar 2006). Adolescence is a stage during which individuals value normalcy and want to fit in and establish independent social relationships (Fielden et al. 2006: LeBlanc et al. 2003). It is also the time of nascent independence when young people begin to make decisions that have the
28 power to affect their futures. They are aware of growing up and becoming adult s, so part of their focus is on that future adulthood. These challenges stigma and future goals significantly shape and are shaped by the chronic disease experience during a dolescence, and translate into agentive 1 decisions about and patterns of adherence and disclosure (Kang et al. 2008). Adherence to Medications Stigma is one of the cultural notions that, in Ahearns (2001) words, mediate the capacity to adhere to medications and to disclose ones status to others. The negati ve effects of stigma lead to non-adherence and failure to disclose because secrec y is seen as the best defense against stigmatizing attitudes and actions (Brown et al. 200 0; Rao et al. 2007) and the surest way to appear normal. Preparation for adulthood and the setting of goals, which adolescents begin to address independently, may be a source of ambivale nce for youth with perinatal HIV, because they may not been raised with an eye on the f uture and they may have witnessed shortened futures in the death of a family member (B rown et al. 2000; Merzel et al. 2008). This uncertainty of the future may lead to difficult ies in the transition to adulthood (Battles and Wiener 2002: Hosek et al. 2002) and affects how they perceive and manage adherence. In addition, if adolescents live with biologic al mothers, then their problems with adherence may reflect the mothers own diff iculties in accepting her disease and taking medications every day (Cunningham et al. 2006: 44). On the other hand, if a childs mother has a positive attitude about the future and the medications that make that future possible, this, too, may be felt by the child (Ham mami et al. 2004). 1 I opt for Ahearns choice of the adjectival form o f agency (Ahearn 2001:110)
29 The capacity to act in response to ones HIV disease is noted consistently in the literature as being affected by the medical ecological context of the y oung person (Brown et al 2000; Williams et al. 2006; Steele et al. 2007). In addition to stigma and personal constructions of the future, the agency of the adolescent with perinatal HIV wit hin the domain of HIV disease management is influenced either facilitated or constra ined by local meanings, that is, the culture of HIV (Brown et al. 2000; Baumgartner 2007), H IV medications (Belzer et al.1999), family dynamics (Pontali 2005), the health car e system (Dodds et al. 2003), and health care relationships (Pontali 2005). Medication adherence is highlighted in HIV disease management because it is currently the only act ion shown to improve and extend a persons life, but even more importantly, because HIV medications are very unforgiving if adherence is not virtually perfect. Th e risk of HIV resistance to medications escalates when patients fall below 95% adherence (Veinot 2006:265). This is equivalent to forgetting a dose fewer than two days a month. In the clinical tradition, adherence to HIV medications is essential and may seem inc ontestable, but clinicians often fail to recognize that pills have symbolic power in addition to active ingredients (Trostle 2000:40). The cultural background of the adolescent and his or her family and community determines the goals that are set with regard to mana ging his or her disease (Schwartz and Drotar 2006), and may not coincide with the health care providers goals for the patient. Anthropologists have examined how differences i n the provider and patients understandings of illness and disease influence both health c are interactions and the patients health behaviors (Hunt and Arar 2001; Wong and Ussher 2008).
30 Non-adherence to medications may be intentional or unintentional. Bauman (2000) outlines the risk factors for chronic illness in general. While unintentional nonadherence seems to be more prevalent, HIV-positive people do sometimes make the decision to stop their medications. Perinatally-infected adolescents may b e especially unwilling to continue taking their medications, because of the disruptiveness of the regimen and because they are weary of both taking the medicine and enduring the side effects (Bauman 2000). Unintentional non-adherence is more complicated and more dangerous for people with HIV because many factors outside of the individual interfe re with the desire or at least the willingness to adhere. Adherence has been shown to be poorer among adolescents than among adults and younger children (Merzel et al 2008: 977). The illness identity that incorporates meanings and values, and the disease management informed by this identity, develop in and are shaped by several context s: the personal (cognitive, emotional), the social, the cultural, and the medical. Adherence, specifically, is dependent upon the adolescents themselves, their family and peer group dynamics, the medical aspects of HIV disease and highly active antiretr oviral therapy (HAART), and the health care system and provider relationships (Pontali 2005). For adolescents just beginning to take control of their medication regimens, adherenc e as a patient-centered activity requiring active personal effort can be an oner ous task. On the individual level, depression has been associated with non-adherence to HIV medications (Murphy et al. 2005). One of the factors that may predispose perinatally-infecte d children and young people to depression and other psychosocial distress is the loss or the threat of loss of family members to AIDS. In addition to the difficult adjustment after
31 such loss, there is the added burden of disenfranchised grief, during which stigma keeps children from speaking openly about the reason for their parents or siblings death (Battles and Wiener 2002:162). Maintenance of viral suppression has been problematic in adolescents with behaviorally-acquired HIV, and points to the need to evaluate adolescents for treatm ent readiness (Dodds et al 2003; Merzel et al. 2008), and better prepare teens with HIV for the life-long, sometimes difficult medication regimens (Murphy et al. 2005). P erinatallyinfected adolescents, while accustomed to taking medications, may nonetheles s require similar groundwork as they become aware of their diagnosis and take control of their medication regimens. Since an effect of living with HIV since birth may be somewhat delayed maturity (Sherr et al. 2009), this groundwork may result in the adolescent s taking control of his or her medications gradually or at an older age (Schwar tz and Drotar 2006). For some young people, taking medications reminds them of their HIV status or seems unnecessary since they feel well (Murphy 2003). Taking medications f or an incurable disease may also elicit thoughts of their own, perhaps imminent, death, w hich is psychologically and emotionally daunting for a teenager (Dodds et al. 2003). T he perinatally infected have the added menace of medication fatigue (Merze l et al. 2008). As mentioned earlier, an emotion-centered response to HIV may lead to poorer adherence. Finally, a huge problem noted by many young people is a logistical one, in which schedules and activities lead them to forget, not have medications with them, be unable to take them because they were busy, or not want others to see them taking their medications (Murphy et al. 2003).
32 In terms of the medical aspects of HIV and HAART, the chronic nature of HIV disease management may begin to affect the perinatally-infected adoles cents sense of normalcy. Disease symptoms and opportunistic infections that require hospitali zation may be a fact of life, and the complexity and tolerability of the medicat ion regimen and frequent medical appointments and directives may interfere with the individuals activities. As adolescents develop autonomy, they may express opposition to care and treatment by resisting caregivers oversight (Merzel et al. 2008) or by rebelling against doctors orders (Hammami et al. 2004: Veinot et al. 2006). Those adolescents with a sense of control over their health behaviors tend to achieve better adherence (Ha mmami et al. 2004). In particular, since they will have already been on medications for ye ars as they reach adolescence, there is the possibility that they have changed regim ens more than once due to treatment failure, and the current regimen may be complex and diffic ult. HIV medication regimens are generally composed of at least three diff erent drugs, and may involve complicated scheduling. Adverse effects may also be severe enough t o interrupt normal day-to-day activities, and will be a reason to forgo a dose (B elzer et al. 1999). While forgetting pills, whether intentionally or unintentionally, may be due to the young persons developmental abilities, it may also be the result of the lac k of compatibility of the antiretroviral regimen with daily activities (P ontali 2005: 140). Family Dynamics The unique characteristic of HIV disease for the perinatally-infected c hild or adolescent is its presence in the family an infected mother, and possibly also a father and siblings with HIV. Like genetic conditions transmitted from parent to child, perina tal HIV causes guilt, but unlike other transmitted diseases, HIV can and often does l eave the
33 infected and uninfected child orphaned or with a mother compromised by the disease (Lee and Fleming 2003). There is also the family experience of stigma t hat accompanies an HIV diagnosis (Bogart et al. 2008), as well as the social and economic inequalitie s that underlie the HIV experience in many families (Castro and Farmer 2005). For this reason, there are many family configurations for the perinatally infected chi ld living with biological parents, foster parents, related kin, such as grandmothers, and adoptive families (Linsk and Mason 2004; Theall et al. 2004; Cohen 1994; Caldwell et al. 1992). The family situation has implications for the adolescents success at adhere nce, because it introduces complex dynamics between infected members and between infected and non-infected members (Rehm and Franck 2000). The relationship between the adolescent and his or her parent or other caregiver has an influence on how he or she will adhere to medications. An HIV-positive parents attitude toward his or her own adherence may be important for how the adolescent adapts to this aspect of disease management (Pontali 2005; Williams et al. 2006), and studie s have shown that HIV-positive caregivers own adherence to medications and retenti on in health care may be affected by their attitudes toward medications, distr ust of health care institutions, and poor relationships with their health care providers (Beer et al. 2009; Beach et al. 2006). Thus, the familys overall attitudes toward their health ca re must be explored. Strategies and adherence partnerships, in addition to open communication, facilitate adherence in the sometimes hectic schedules of daily livi ng (Merzel et al. 2008:981). Open communication between caregivers and health care providers can also have a positive effect on the young persons adherence, and the inclusion of family
34 members in the management of disease is vital from some cultural standpoints (Brow n et al. 2000). At the same time, culture at the family and societal level may dicta te secrecy and silence when it comes to a childs knowledge of his or her diagnosis and involvement in his or her health care (Lipson 1993; 1994). Studies show that biological parents differ from unrelated caretakers in how they transfer responsibility and disclose th e diagnosis to the child (Ledlie 1999). A family-centered, multi-disciplinary approach acknowledges the importance of the family and the culture of the patient, and has shown positive impa ct on disease management (Brown et al. 2000:85). The relationship of the primary caregiver to the HIV-infected child (Ledlie 1999), the social environment and support of the family (New et al. 2007), and the cultural beliefs that guide behavior all influence how an adolescent learns of his or her HIV diagnosis, and adjusts to the responsibility for his or her health and adherence to medications (Bikaako-Kajura et al. 2006). Health Care Relationships The final influence on HIV management and medication adherence is the health care system and the practitioner-patient relationship (Hammami et al. 2004; Pontali 2005). The health care system can be a convenient environment to navigate or it can confound the patient at every turn (Dodds et al. 2003), and the degree of availability, accessibility, affordability, and cultural appropriateness of health ca re services determines the degree to which patients are able and willing to comply with medic al counsel. For the adolescent transitioning from pediatric to adult care, the new hea lth care system can provoke considerable anxiety and lead to suboptimum compliance or falli ng out of care (Wiener et al. 2007). A transition team made up of clinical and psychosocia l
35 practitioners, family members, and the adolescent can ease the move to adult car e by engaging in planning and counseling with the young person before the transition occur s (Kang et al. 2008; Pontali 2005). The adolescents health care team is crucial to the success of the young per sons management of HIV disease, both by providing the necessary information for correct adherence to often complicated regimens and by providing the support that young patients need (Pontali 2005). Perinatally-infected patients have been in care t hroughout their lives, and the relationships they have with these team members can be som e of the more stable relationships in their lives. However, as the children moves into adole scence, the health care provider may also be viewed as the authority who poses demands on them and, from this perspective, does not acknowledge their lived reality and leaves the m with no control over their actions. This position of the health care provider can be a huge barrier to adolescents successful disease management (Dodds et al 2003:43). The expression of agency as a form of resistance to collective represe ntations (Das 2001) of a particular chronic health condition is one way that afflicted persons can cope with their condition, especially if it carries stigma, and can gain a mea sure of control that seems to be in the hands of society and the health care system. Agency as resistance can be directed at stigma, and thus lead to better adherence and disc losure, since individuals contest the stigma and act as valuable beings, without shame. Conversely, agency can be exercised as resistance to compliance and adhere nce, as patients attempt to gain a sense control that too often seems situated with the prac titioners and with the medications that interrupt their lives (Kourrouski and Lima 2009; Childs a nd Cincotta 2006). Responses to this resistance can be found in refining compliance issues
36 so that the patient shares the decision making with the practitioner. This means i nvolving the young person in the design of his or her care. Adherence and other management issues are fluid (Williams et al. 2006), as are the illness/wellness identi ties (Paterson 2001), and these vary according to the adolescents personal and social concerns, as we ll as his or her medical issues. Health care providers must recognize that adher ence may sometimes sink low on the list of an individuals priorities, and it is in collaborating on setting medical goals (Schwartz and Drotar 2006) that conflict between co mpliance and other lived experiences can be minimized. Adherence in adolescents seems to be positively affected by a warm, trusting relationship with their healt h-care providers (Pugatch et al. 2002). The establishment of goals by the growing child may not have been encouraged by family or health care providers when survival beyond childhood was not probable. Now that children are becoming adolescents, and adolescents are becoming adults, it may be helpful to approach compliance as empowerment (Aujoulat et al. 2008), so that the young people feel that they have a stake in their health care and have the abi lity to perform the compliance activities successfully. This approach, in which there are goals and collaboration, must be considered in the context of the adolescents cultural identit y and developmental level. For all adolescents, but especially for those with chronic a nd stigmatized conditions, the desire to be normal is paramount. Normalcy is a socia l construct, communicated among peers, and it is also defined culturally (Taylor et al. 2008:3088), so it is important for the health care team to be aware of the cultural influences that guide their patients in integrating their disease manage ment with the other facets of their lives.
37 Despite the thousands of studies of compliance (Trostle 2000) that have been published in the last several decades, complete adherence to medications remains difficult to attain (DiMatteo 2004), and difficult to measure (Simoni et al. 2003; Wiener et al 2004). In addition, adherence itself is defined individually, and it is often conceived and assessed differently by the patient and by the practitioner. For the patient, a s Trostle (2000) noted, taking medications is more than the instructions given by the doctor; taki ng pills has many meanings within the context of the adolescents life, and these m eanings determine how those pills are taken and how important the person considers his or her adherence. The discord brings up the definitions of adherence and compliance, and the loci of power and control that inhere in those definitions. Trostle (2000) and many others accept Hayness definition of medical compliance as the extent to which the pat ients behavior...coincides with medical or health advice (Haynes 1979, quoted in Trostle 2000:38). The word adherence is often used in this definition, and the two terms are used interchangeably. Fawcett (1995; cited in Trostle 2000) made the distinction between the two words, suggesting that adherence is being faithful to the medic ation plan, whereas compliance evokes conforming to the practitioners instructions. The distinction is trivial if one argues that the medication plan, after all, is g iven to the patient per the practitioners instructions, and the authority in any case rests wit h the practitioner. Trostle maintains that adherence is an ideology, and as such, judges the patients adherence behavior in terms of imposed professional expectations (Trostle 2000:41; emphasis added). It is the power exercised in the practitioner-patient re lationship, and the efforts, if any, that are made to establish trust and collaboration in this re lationship that have implications for the way in which the patient accepts and acts upon the
38 information shared during the medical encounter. For adolescents attempting to est ablish autonomy in decision making, this power relationship may be especially precarious They also may feel reticent about being truthful with providers because of the power the provider wields, not only to instruct but also to rebuke (Rao et al. 2007:32). Researchers have addressed this issue by looking at an empowerment-based approach to adherence (Aujoulat 2008; Veinot et al. 2006) and at the patient as partner in the provider-patient relationship (Thorne and Paterson 1998). Not only would a more collaborative medical encounter and ongoing relationship distribute power in a more meaningful way for the patient, but it would also provide the opportunity for the provider to learn about what medication means to the adolescent, beyond its active ingredients (Trostle 2000). W ith the ever-common problem of less than optimum adherence, the need to examine what disease, medication, adherence, and wellness mean in the everyday lived experie nce of perinatally-infected, HIV-positive adolescents is as great as ever. For this group of children on the brink of adulthood, which is an unexpected but current reality, this effort to understand and help improve their lives by making disease self-management something they believe they are capable of engaging in efficiently, is an obligation that cannot be delayed. Disclosure of HIV Diagnosis Parents, caretakers, and health care providers face the complex task of revea ling to perinatally infected children the nature and name of their illness, and there is wide variation among these adults on when and how disclosure should occur. Before the era of HAART, children were not expected to survive beyond childhood or early adolescence, and so parents often could not (in the case of infants) or opted not to identify the disease
39 to their child (Domek 2006). Since combination antiretroviral therapy has improved both the quality and length of life, that option is no longer feasible, though many parents of ten delay disclosure for years (Abadia-Barrero and LaRusso 2006). The issues and at titudes involved in disclosure to a perinatally infected child are personal, social, emotional and cultural, and will determine whether a parent or caretaker chooses to disclose in early or late childhood (Wiener et al. 2007:157). Parents and other caretakers report reasons for and against disclosing to t he HIVinfected child, particularly at a young age. Most commonly, they maintain tha t children are too young to understand the diagnosis, would share the information impulsively and inappropriately, might have negative emotional reactions, might experience psyc hosocial harm (depression, social stigma, etc.), and in the case of biological parents, would be angry with them (Vaz et al. 2010:248; Wiener et al. 2007:156). A small percentage in one study expressed the wish to protect the childs innocence (Wiener et al. 1996, cit ed in Waugh 2003:170). On the other hand, they have appreciated the importance of disclosure when adherence to medications becomes problematic, the child is approac hing puberty and possible sexual activity, and in general because the child needs to know how to protect others from infection (Vaz et al. 2010:250; Wiener et al. 2007:156). The disclosure issue, however, not only addresses the childs readiness to accept the diagnosis, but is a function of the parent or caregivers emotional readiness to impart this information and deal with the subsequent reactions and questions (Waugh 2003:170). In particular, children living with biological parents or related kin are known to be disc losed to less often than their counterparts living with unrelated caregivers (Ledlie 1999), the biological parents or relatives being reticent to address the parents history of HIV
40 infection and their role and associated guilt in the childs infection (Ledlie 1999; Lipson 1993). Mothers also may not disclose for reasons of denial or possible negative reactions from partners and family (Mitchell et al. 2008:45). The American Academy of Pediatrics recommends disclosure to school-age HI Vinfected children in a manner that takes into account the individual childs cognitive development and social context (Wilfert et al. 1999). The practice of openness about illness in children with cancer became common in the 1970s, when survival rates increased and childrens rights were being noted and discussed (Wiener et al 2007:1556). However, open communication may be more difficult with HIV than with cancer, due to the continuing stigma associated with HIV, maternal guilt, and the complica ted issue of HIV as a disease of the family, all of which characterize HIV and dif ferentiate it from other chronic childhood diseases (Lesch et al. 2007; Wiener et al. 2007; Cohen 1994). Studies have nonetheless shown that young children understand the concepts of illness and death (Bibace and Walsh 1980; Bluebond-Langner 1978; Lipson 1993), and are aware of their conditions even if parents are silent about them (Wiener et al. 2007). In addition to childrens knowledge of and attention to what is happening to them, there is the possibility that children will overhear their diagnosis being named and discus sed by medical providers (Instone 2000:242), and that it is better for them to learn their diagnosis through a deliberate process planned and undertaken by parents, caret akers, and medical providers (Lesch et al. 2007). The psychosocial effects of disclosure to children are inconclusive across ma ny studies and report a range of psychosocial and emotional effects (including a lack of effect [Instone 2000]) of disclosure and nondisclosure (Wiener et al. 2007), though a
41 longitudinal study of perinatally-infected children found no significant diffe rence in the quality of life of these children before and after disclosure (Butler et al 2009). Some children report that they felt sadness and worry upon hearing their diagnosis, and other s responded with a quiet acceptance (Oberdorfer et al. 2006:285), but there were als o positive aspects to disclosure (Vaz et al. 2010) and perhaps a greater willingness to make health care decisions (Lesch et al. 2007). Of special significance is the positive correlation between full disclosure of HIV status to children and adherence to medications (Bikaako-Kajura et al. 2006). The prevalence of nondisclosure of HIV status to children is widespread, with similar outcomes from studies in Europe (Thorne et al. 2000), Brazil (Abadia-Bar rero and LaRusso 2006), France (Funck-Brentano et al. 1997), India (Arun et al. 2009), South Africa (Kouyoumdjian et al. 2005), Thailand (Oberdorfer et al. 2006), and the United States (Flanagan-Klygis et al. 2002; Lester et al. 2002; see Wiener et al. 20 07 for a review). While nondisclosure may be part of a cultural and social environment that dictates silence and secrecy (Hejoaka 2009), it serves to ensconce the child s illness experience in an embarrassing private world and becomes a shameful charac teristic of the self (Abadia-Barrero et al. 2006:40). The disclosure of HIV status, on the other hand, clarifies and legitimizes for the child the lifelong experience of see ing doctors, taking medicines, and being sick, thereby reducing anxiety and confusion and, over time, providing a sense of relief and normalcy (Abadia-Barrero et al. 2006:37). With disclosure of their disease, children were shown to understand their health condition better (Gerson et al. 2001), which could lead to the childs exercising autonomy and more
42 successfully attempting to achieve cognitive mastery over their bodies and lives (Lipson 1993:8). Disclosure is a complicated venture, embedded in the larger, ongoing family story of HIV, and many have suggested that it not be a discrete event but rather a proc ess, an ongoing dialogue (Lipson 1993). The benefits of processual disclosure to school-age children convey the idea that it is not so much whether or even when but how to speak with children about any disease (Lipson 1993:8; emphasis in original). The content of the discussion must certainly coincide with the childs cognitive ability, and i nvolves more complex explanations as the child gets older. However, partial disclosure or false attribution of the childs illness, which are very common among caregivers (Ar un et al. 2009; Oberdorfer et al. 2006; Funck-Brentano et al. 1997) can violate trust, cause suspicion and anxiety when questions remain unanswered, and lead to rebellion through non-adherence (Bikaako-Kajura et al. 2006). On the other hand, children rated trust very highly as a reason for disclosure (DeMatteo et al. 2002). Health care providers often favor disclosure earlier in the childs life tha n parents or other caregivers deem appropriate (De Baets et al. 2008; Klitzman et al. 2008). Thus, the process of disclosure may clash with a familys cultural perspectives and social standpoint, so health care providers need to be aware of the dilemmas which preclude disclosure that many of their families face (Lipson 1994). Despite the differe nces in when disclosure should occur, many caregivers voice their desire for support and input from providers during the disclosure process (Myer et al. 2006). The developmenta l illness experience model presented by Abadia-Barrero et al. (2006) and the characterization of disclosure as an ongoing and dynamic process (Ledli e 1999:148)
43 reflects the importance of recognizing the increasing maturity and cog nitive development in children, the unique but changing sociocultural factors, family issues and care giver needs, and the gradual nature of understanding what AIDS means to the child and the family (Abadia-Barrero 2006). The process approach to disclosure can also include the health care providers, who often have long, trusting relationships with perinatally infected children. The dialogue between caregivers and providers may resolve the tension between caregivers and healthcare workers divergent understanding of disclosure and views of the child (Lesch et al. 2007:815) and help them prepare for the ongoing dialogue that both the caregivers and the clinicians will have with the c hild. In addition to the social, medical, and emotional reasons for disclosing the HIV diagnosis to children, there has been increasing attention given to the right of the chi ld to know his or her diagnosis and thus begin to learn the personal and public health ramifications of successful HIV disease management (Wiener et al. 2007). The efforts to protect a child from the disturbing revelation of his or her incurable, stigm atized disease are counterbalanced by the ethical exigencies that take into account the child s desire for answers and capabilities to exercise responsibility (Lipson 1993, 1994). Three broa d ethical issues surrounding disclosure of an HIV diagnosis to children are the consens us on when to disclose, the competing rights of parents and children, and the health ramifications for both child and society (Klitzman et al. 2008). These complex is sues entail conflicting opinions and rights health care provider versus parent, parent versus child, and child versus society which must be addressed on a case by case basis. Approaching disclosure as an ongoing process, with the collaboration of parents and health care providers, can provide needed time to address these issues and form a
44 consensus on what is best for the particular child and family. Blasini et al. (2004) developed a disclosure model comprised of pre-disclosure education sessions for providers, caregivers, and children, a disclosure event, and post-disclosure sessions. T he model takes into account the different conceptualizations of disclosure by providers a nd parents, and encouraged partnerships among all parties (Blasini et al. 2004:183). Anthropology and Childhood Studies Children and childhood have been studied by anthropologists since the disciplines beginnings in the late 19 th and early 20 th centuries. Books and monographs contain details of the place of children in kinship relations, child rearing and social ization practices, and initiation rituals, among other topics. (LeVine 2007). The focus on children, as social actors, with their own points of view, did not, however, begin to develop until the 1920s and 1930s. Margaret Mead, well known to scholarly and popular audiences, conducted research with children and adolescents (Mead 1928, Mead 1932; Bateson and Mead 1942), in which she looked at childrens thought, adolescent development, and interpersonal relationships. One of the stumbling blocks in the early anthropological studies of children as learners of culture was the dependence on psychology for developmental theories of the child, which as LeVine notes, wer e unreliable, as one developmental theory followed another into the trash heap of history (LeVine 2007:249). In addition to the loss of credibility, a difficulty with many psychological theories was that they did not acknowledge cultural differences a nd influences, but rather considered stages of cognitive development, moral developm ent, and attachment, for example, to be universal (LeVine 2007:250). Toren goes further stil l
45 in implicating the notion of the child as an a-social, a-historical individual in the various psychological and anthropological theories of cognition (Toren 1993:471). Subsequent anthropological research saw the move away from dependence on psychological theories of stages of development and cognitive structures, though Hardman acknowledged the benefit of including a formal list of analytical notions (Hardman 1973:516) qua Piaget and Levi-Strauss. Then in the 1950s and 1960s, John and Beatrice Whiting and colleagues developed and carried out comparative ethnogra phies known as the Six Cultures Study (Whiting 1963; Whiting and Whiting 1975), which was systematic naturalistic observation of children in their routine behavior s ettings (LeVine 2007:253). The importance and value of studying children in their own right gained some traction from the 1960s onward; nonetheless, Hardman, in 1973, was asking Can there be an anthropology of childhood? and proposing the exploration of childrens worlds as more than just training for adulthood (Hardman 1973:501). The 1980s and 1990s saw this shift in the study of children and childhood to an even greater emphasis on the children as autonomous beings, not just adults in the making (Brannen 1996:114). The 1989 United Nations Convention on the Rights of the Child (UNCRC) underscored the stature and separateness of the child, and his or he r human rights and needs for protection (United Nations 1989). The recognition of the child as creative cultural actor as well as the influence of environmental vari ation on childhood together moved anthropology into a new paradigm of childhood studies that saw its genesis in the 1980s (James 2007).
46 General Conceptualizations Children may have been regarded as just part of a larger kinship group, or a stag e on the way to adulthood, but what anthropologists did recognize through ethnographic study was that sociocultural norms were dependent on environment and that childhood environments exhibited wide cultural variation (LeVine 2007:248). The new childhood studies of more recent decades have focused on the childs environment as a culture separate from the dominant adult culture and the child as an autonomous social actor. This called into question the idea of childhood as a liminal stage (James et al. 1998:198) and young children as precultural or presociological (James et al. 1998). The idea of children as empty buckets filling up with culture was thus rejected, and parti cipation of children in research was emphasized, so that data was gleaned from children t hemselves (Benthall 1992:1). The acknowledgement of childrens contributions led not only to a new anthropology of children, but also to a more comprehensive anthropological lens on culture (Bluebond-Langner and Korbin 2007:242). This bold turn in childhood studies meant that children were approached as independent members of culture and society, with their own subculture and capacity t o formulate meanings during their interactions within this subculture (BluebondLangner and Korbin 2007). Toren (1993) argues that childrens acts and ideas, and the meanings they construct, are socially mediated, historically situated, and based in experience, and are distinct from, and can even be oppositional to, the meanings of adults. In order to examine the context and experience of children as they not only acquire but also crea te, transform, and challenge culture (Kyratzis 2004; Toren 1993), their voice and stat us are highlighted (James 2007; James et al. 1998). The currency of the notion of children as
47 articulate talkers and formulators of meaning is demonstrated in studies and t heoretical discussions, such as talk and social competence (Hutchby 2005), talk and peer culture (Kyratzis 2004), adolescent talk (Baker 1984), and the importance of listening to childrens voices in research (Roberts 2000). The status of children refers to thei r present selves, as opposed to their slowly but continuously developing selves growing toward adulthood. This duality in childhood being and becoming is discussed further below. The emic perspective of children in anthropological and other social science research aims to counter the longstanding powerlessness and silence of childre n in social life. By designing research in which children can be heard, their voices not being silenced, suppressed, or ignored (James 2007:261), the study of culture and social organization can be enriched by the information gained from the standpoint of the child (James et al. 1998:31). At the same time, the childs perspective fosters socia l understanding, recognizes the childs right to expression, and can serve as a basis for policy. (McKechnie and Hobbs 2004). However, this approach to a socially active childhood and to the childs standpoint, which James et al. (1998) define in four sociological types of varying autonomy and power ascribed to children, raises the prospect of overgeneralization by glossing over the individual and cultural dive rsity among children and childhoods (James et al. 1998:30-1; James 2007). This homogenization of childhood can be prevented by the participation of children as co-researchers and with particular anthropological methods of inquiry. These are di scussed in Chapter 3, as will the use of childrens voices and the issue of representation (Ja mes 2007). In addition, the medical ecology framework can mitigate such false homogene ity
48 as it places children in particular contexts and highlights specific socia l interactions within those contexts. This framework is discussed below. While one of the foundations and aims of the anthropology of childhood is to dispel the notion of the immature child (Toren 1993), and to demonstrate the competence of the child as social actor and culture creator, it is important to recognize t hat childhood is fluid (James et al. 1998:203-4), children change rapidly, and their lived experienc e occurs within and is affected by a social structure that includes adults and adult s influences. With regard to childrens experience of illness, the notion of fluidity extends to the childs wellbeing (Crivello et al. 2009), and therefore, his or her manageme nt of disease may likewise be fluid. The duality of being a child in time and place and becoming older as one moves toward adulthood is addressed by scholars of childhood studies, who attempt to contrast, rank, balance, and assimilate them. Uprichard ins ists on assimilation, that children and childhood are always and necessarily being and becoming (Uprichard 2008:303; emphasis in original). She notes that children themselves are aware of both statuses and she argues that each shapes the other (Uprichard 2008). Despite Uprichards concern that in focusing on the being child, the temporali ty of the becoming child has been lost (Uprichard 2008: 306), anthropologists and other social scientists have maintained this focus as a counterpoint and corrective to pa st structures and conceptions that presented the child as objects rather than subjec ts (Christensen and James 2000), natural as opposed to cultural (Jenks 1996; LeVine 1998; Panter-Brick 1998), incompetent (James et al. 1998), and waiting (Qvortrup 2004).
49 Childhood Studies and Management of Chronic Stigmatized Disease The idea of being and becoming in childhood raises two issues which are germane to the study of adolescents management of perinatally-acquired HIV: the agencyvulnerability dichotomy and temporality. The new childhood studies, including the anthropology of childhood, reject a hard structural determinism and mere soci al reproduction in children, and instead emphasize the child as a competent social act or capable of producing a separate childhood culture (Jenks 1996; James et al. 1998) as we ll as interacting with adult culture and, in so doing, transforming, challenging, a nd learning from it. James and James present a model, based on Mary Douglass grid-group ma trix of social organization (Douglas 1973, cited in James and James 2004:53), whereby the production and reproduction of childhood occur in time and space. It comprises Law, which they define as normative, mediative, culturally-reflective processes and mechanisms of regulation that exist in all societies, both religious and secular comprising a system of principles and practices that underpin the social construction of a wide range of behaviours, attitudes, beliefs and relationships [and] defines the rights and responsibilities of, and therefore the relationships between, citizens in any given cultural and political context. (James and James 2004:49) The Law is situated between, as it were, the social space that is structure, a nd social action, which is agency, and mediates the process by which structure and age ncy affect and are affected by the other (James and James 2004:57). The model allows for variations in children as actors, both as particular members of particular soc ieties and as members of a human group with certain similarities, and for the existence of plur al childhoods as structures, similarly ranging from the particular to the gene ral (James and James 2004:58-60).
50 The growing prominence of childhood and children as distinct entities in particular societies (and at the level of more global structures, e.g., the U NCRC) at this particular moment is evident in the more visible and influential roles of children, and reflects changes in the social order and cultural practices (McKechnie and Hobbs 2004). The UNCRC (1989) is one such action. In all societies, the cultural, economic, politic al and social contexts provide the particular nexus for responses about, toward, for, and by children. The social changes and the social continuities, in addition to the regulati ons which mediate the social order, are controlled by adults (James and James 2004:25), so the agency of children necessarily involves the interaction between adults and c hildren, and the uneven power relations between them. For example, the power of adults is questioned by Woodhead (1990) in his rejection of the characterization of childrens needs as straightforward observable facts by authoritative adults. This wa y of looking at needs dismisses the particularities and competencies of children. It is wit hin these adultchild relationships that the childs vulnerability appears in a paradoxical coe xistence with agency. This mix is perhaps more dialectical in nature than paradoxical, as the chil ds agency is a reaction and a response to vulnerability that accompanies a particular stage of childhood. Aside from the most common areas of interaction, the family and the school, the health care system serves as a setting for adult-child connection and communication, and the sick child is one example of the coexistence of agency and vulnerability. Perinatally-infected childrens vulnerability stems from their stat us as children, their sick role, and their compliance with the adult professional medical sphere. I t is this idea of compliance, as a judgment of a patients behavior with regard to professiona l expectations, which keeps authority safely within the hegemonic walls of medici ne and
51 the adult world (Trostle 2000). Thus, the perspective of the HIV-positive adolescent as well as his or her individually-shaped management, can demonstrate the act ive role and precise meanings that adolescents develop in response to their illness. The heal th care providers understanding of the patients perspective is a necessary step in the forg ing of a partnership in health care treatment that spreads rights, responsibilities and power among the participants and may ostensibly lead to better management and better he alth. This recognition of agency in health management helps to reduce the adolescent s vulnerability. The concepts of being and becoming in childhood raise two additional issues that are relevant to the lives and disease management of HIV-infected adolescents particularly those infected at birth. These are temporality and embodiment, whi ch are experienced uniquely by children and in childhoods, and must be examined by looking at the child or adolescents autonomous culture (Crivello et al. 2009; Hirschfeld 2002:613). Both are sociocultural constructions as well as physical realities, and are experienced by adolescents and children in ways that are distinct from adult conceptions and expe riences. For the chronically ill child or adolescent, there may be developmental and psychoso cial effects that stem from the constant presence of illness. For the HIV-infe cted child in particular, the disease may result in reduced height and weight, as well as del ayed pubertal development (Buchacz et al. 2003), which can alter both temporal and embodied experience. The fact that HIV and other diseases, disorders, and disabilities are physica l conditions has often obscured the social and cultural meanings and the different ways t hat they can be experienced, and the different cultures that children, including ill c hildren, construct apart from adult culture (Hardman 1973). In Davis et al.s approach to chil dren
52 with disabilities, overcoming the unitary notion of the disabled child (Davis et a l. 2000:206) permits the revealing of structure-agency interactions and changes that children effect in their particular environment (Davis et al. 2000). Time and embodiment, and their meanings, are two such phenomena that children with HIV are shaped by and which they in turn reshape as they experience life with HIV. The importance of time in childhood is revealed in expressed attention to age, constructions of age grades and age classes cross-culturally, and its fut ure orientation (James and Prout 1990). In addition, the passage of time during childhood shows evidence of ongoing developmental changes, and the social meanings of these chan ges, as well, shift over time (Toren 1993:462) and across cultures (Hockey and James 2003: 4-5). The process of ageing and the passage of time are thus qualitatively experienced, and childhood is less a fact of nature and more an interpretation of it (James et al 1998:62). Ethnography has revealed very different experiences of ageing, where, for example, the demarcation of childhood/adulthood is made by parenthood or betrothal rather than by chronological age (James et al. 1998:63). Rites of passage and ini tiation rituals are also social and cultural acts that symbolically indicate the e nd of childhood and the entry into adulthood, a process of ageing and change that are not necessarily evide nt without the rituals (Hockey and James 2003:46-7). The future orientation of time in childhood may be especially problematic for adolescents with perinatal HIV. Many of these young people were not expected to ha ve a future, so they may not have a strong sense of becoming adults. They may not see how their past and present relate to their future (Uprichard 2008), or they may see w ho they are as what they may never become. The generational relationships, which diff erentiate
53 children from adults (James et al. 1998:66), must also be explored, for the fractures i n these age links through untimely death may also affect the adolescents se nse of time. How these adolescents construct and attach meaning to their pasts and presents, and t hose of their parents, becomes salient when we explore their attitudes toward medica tion adherence. Adherence to antiretroviral therapy is the only means of giving HIV-positive individuals the opportunity at a future, but these children, who have been ill all of their lives but now know their diagnosis, may not envision a future at all. Thus, adherence may seem nonsensical, and their present needs may be all that concern them. On the other hand, some of these adolescents may see medication as their last-ditch effo rt at a possible future, and therefore practice adherence faithfully. The meaning of ti me and ageing, and their conceptualizations of the future may also have implications f or their emergent sexuality; the effects of risky sexual behavior, for them and for t heir partners, are in the future, and this may or may not have meaning for them. Whether or not they engage in risky sexual behavior, adolescents are developing a sexual identity and perspective on sex, and making decisions based on these developments (James and James 2004:155), so it is essential to know their perspectives and the elements that constitute their adolescent culture in order to address their health-related implicat ions. The chronicity (from birth, in this case), gravity, and stigma of HIV, therefo re, necessitate an examination of perinatally-infected adolescents perspectives on time, in t he culture that they create in the present, which may be very different because of their experi ence living with HIV. Health care providers have a key role in the lives of perinatally infected yout h. They have been involved in some of their patients lives continually since birth. As
54 medical care providers, they necessarily see the patients future as a priority in their decisions about care and treatment, and thus the childs everyday experience are considered, if at all, only for their future consequences (James et al. 1998:74). The disagreement between provider and patient, and the noncompliance of the patient may be the consequence of the routine view that children are incompetent and of value as potential adults rather than of interest as actual children. The success of medicine often risks seeing patients success in terms of survival, that is, the future, rath er than quality of life, that is, the present. The structure of time and the interpretation of the fut ure also figure into adolescents transition from pediatric to adult health care (Pontali 2005). Pediatric HIV health practitioners in FAN acknowledge the difficulty of this change in their patients lives, and their understanding of the temporal currents of these li ves and of how these patients view this transition may facilitate a process by which the i ntegration into adult care is made. As we have seen, the theoretical basis of the new childhood studies is the child as competent social actor, meaning maker, and cultural author, viewed from the perspec tive of the emic present where agency and structure are balanced (Prout 2000:3). This des ign is underpinned by a social constructionism and, as will be argued below, by the medical ecology in which the perinatally-infected adolescents are situated. It a lso argues against a strict biological determinism and structuralism that sees children as pri soners of their physical and psychological stage in life, developing gradually until the atta inment of the freedom of adulthood. That said, children, like the rest of us, are embodied beings, and while it is the theoretical view presented here that social and cultural va riations fashion a heterogeneity of children and childhoods (and vice versa), one must recognize that the
55 lived experience of all young people is an embodied experience, and the experience of the body has effects on the persons lived experience. In addition, illness, health, and disease are physically as well as socially experienced phenomena. Thus, t he exploration of adolescents meanings and management of HIV may benefit from an explorati on of how the body (and its processes of change) forms an entity that is experienced and interpreted by different actors in different social and cultural contexts (Prout 2000:3-4). The notion of the chronically and seriously ill child summons up vulnerability, to which many in the new childhood studies object, at least as a wholly biologically determined state. Rather, as Christensen argues, vulnerability is a culturally and socially constructed status which, particularly in childhood illness, consigns t he child to dependence upon adult caregivers and ignores his or his knowledge and experience of illness (Christensen 2000:38). Bluebond-Langner demonstrates quite convincingly in her poignant study of terminally ill children that they are very aware of what i s happening to them, and very knowledgeable about their illness and its treatment (Bluebond-Langne r 1978). For the HIV-positive adolescent, physical and physiological changes in the bod y, opportunistic infections, and medication side effects are all part of the illness experience. The benefits and drawbacks of antiretroviral therapy are part of the fluidity of w ellbeing, and their impact on the youths social and embodied identity may in turn affect their decision making with regard to adherence and other disease management activities The vulnerability and incompetence, along with the associated dependence that adults including health care practitioners, often attribute to young people are constr uctions of childhood that lead adults to interact with children authoritatively and protectivel y,
56 effectively blocking the centrality and visibility of childrens agency w ith regard to their bodies (Prout 2000) and interfering with or complicating their disease manageme nt. The contradictory discourse of the child (Brannen 1996:115) as, on the one hand, a dependent and incompetent individual whose agency is ignored and, on the other hand, a child who is expected and encouraged to comply with medical instructions, points to the need for approaching the child, and especially the adolescent, as a more acti ve participant or partner in the undertaking of tasks and construction of meaning normally thought of as resting in the adult domain. The puzzlement of the stage and status of adolescents with HIV, and perhaps especially those with perinatally acquired H IV, raises the issues of transitionality and liminality that define these young people. Adol escence can be seen as a liminal space where the individual is no longer a child but not yet a n adult. Rites of passage in many cultures mark this transition (Hockey and Jame s 2003). The sick person, and in particular, one with a chronic illness, may also be liminally identified, for the Parsonian sick role, with its limits and roles in the sickness st age and the recovered health stage, is not complete (Crossley 1998:508). The chronicall y ill, while never relinquishing their illness, nonetheless can spend extended periods of time i n good health and are expected to fulfill responsibilities associated with good heal th (Crossley 1998:508). For perinatally infected adolescents, the period of liminali ty may include an acute phase, in which the person is overwhelmed by the diagnosis of HIV, and an enduring phase, which sees the person as perhaps healthy but always HIV-positi ve (Little et al. 1998) Therefore, the experience of HIV may be a source of confus ion for the young people and for those around them. It may, however, also be a conceptual time and
57 space where their competence as social actors and creativity in culture making is evident, as they occupy this way of being uniquely. This liminality may extend to the context of the health care system and provider patient encounter, where the representations of the sick child remove the child in hi s or her socially and physically lived experience and replace him or her with technodressing [or] the generation of mathematical symbols which represe nt the corporeal body (Place 2000:176). The HIV-infected adolescent or child becomes his or her viral load and CD4 count; his or her life outside of the clinic is the number of medications and their schedule and dosage. Research Ethics: Ethics and Research with Children Research with children and adolescents is considered ethically challengin g because of their characterization as vulnerable. Children possess less cogn itive ability, less lived experience, and less power vis--vis adults. Their need for protecti on in a variety of situations is recorded in the United Nations Conventions on the Rights of the Child (1989). Their rights are duly noted in this document as well. The involvement of children in research requires a search for balance between these needs and rig hts. The theoretical perspective that guides the anthropology of children character izes children as agentive, competent, social actors, whose participation in and contribution to cultural systems is important and necessary to study. Yet, historically, the resea rcher has been in control of the research design, methodology, direction, and analysis, so that the power and contribution of children (and indeed adults) to the process and outcomes of research can be and are perceived to be inferior or minimal compared to that of the researc her.
58 In order to approach research in an ethical manner, in which the interests of the participants are discerned and legitimated, evaluated and addressed, it is incum bent upon the researcher to examine the issues that make research with young people problematic and, in the course of addressing these issues, make informed decisions about the resear ch methods that best elicit findings that are acceptable and beneficial to all inv olved (Whiteford and Trotter 2008). Research with human subjects has a checkered history. While remarkable breakthroughs in medicine have occurred as a result of such research, it has al so been the source of horrifying, harmful, and, to those involved, unknown consequences. In order protect participants, define responsibilities, rectify the ills of the past and safeguard and guide all who are involved in research with human subjects, a number of reports, strategies, principles, and treatises have been created and introduced to the public and to researchers, in the United States and internationally. The Nuremberg Code of 1947 resulted from the record of atrocities in World War II, in which people were forced into experiments, and the Nuremberg Trials whi ch took place after the war (OHSR 1949). The Codes principles include securing the res earch participants informed consent to take part in the research and the right of the pa rticipant to end his or her participation at any time. The World Medical Association adopted the Helsinki Declaration in 1964 (WMA 2008). This is a policy statement that delineates protections of participants in medical research, and addresses the issues of gaining assent from those deemed incompetent, presumably including minors (WMA 2008). Despite the establishment of the 1947 Nuremberg and 1964 Helsinki ethical codes, and other international documents, exploitative and harmful research continued.
59 In the United States, the Willowbrook State Hospital (1956-70), Jewish Chronic Disea se Hospital (1963), and Tuskegee Syphilis (1932-1972) studies are three examples (UNH n.d.) of research that was conducted on both children and adults without their knowledge. In 1974, Congress passed the National Research Act, which provided for the creation of the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. The commission was charged with identifying ethical pr inciples to guide federally-funded research; this was published as the Belmont Report in 1979 (OHSR 1979). This report explains three basic ethical principles respect f or persons, beneficence, and justice that are considered imperative in research with h uman subjects, as well as the applications of these principles in the carrying out of resear ch. The applications of the principles of ethical behavior in research, while releva nt to adults and children alike, highlight some of the issues of vulnerability and protecti on in research with children. They include informed consent, information, comprehension, privacy, and voluntariness, which acknowledge the principle of respect and autonomy; assessment of risks and benefits, and the nature and scope of risks and benefit s, which apply the beneficence principle; and the selection of subjects, which applies justic e (OHSR 1979). Age is one aspect of a person that determines vulnerability, and it is accepted in many, if not most, cultures that the young are a vulnerable group (Whiteford and T rotter 2009:88). While the ethical guidelines of the American Anthropological Association a nd the Society for Applied Anthropology do not specifically mention children as a group, the British Sociological Association contains the phrase, Special care should be t aken where research participants are particularly vulnerable by virtue of factors such as age, social
60 status and powerlessness, but it does not provide details of special care (quoted in Morrow and Richards 1996:93). Children are generally vulnerable on all three counts, and for children with a serious disease or disability, there may be additional fact ors contributing to the possibility of harm or exploitation. The theoretical perspective that will guide my research sees children and adolescents as competent social actors, capable of agency in their own social cultural, and medical settings (James et al. 1998). Their lived experience in their parti cular environment is the basis for understanding how they manage their HIV disease, incl uding medication adherence. This perspective recognizes that power lies with the adole scents, both in their lives and in their participation in the research. The acknowledgement of power in a group which is generally perceived and treated as powerless add s ethical and methodological complexities and uncertainties to the research process by i nterposing a new actor and thus a new set of social relations into the field (Christensen and Pr out 2002:482). The complexities may be addressed by treating the ethical concerns as an ongoing process, to be revisited throughout the research study (Helseth and Slette b 2004), and by carefully choosing methods that best allow both a smooth process and forthright content as a result of the adolescents participation. The starting point for addressing the ethical issues in research with per inatallyinfected adolescents with HIV/AIDS is thus the same as it would be for resear ch with adults. The participants must be fully informed of the research and of what their participation will entail, their understanding must be established, and their infor med consent to participate must be freely given. For those who are not at the age of conse nt, assent must be obtained, which is taken to be affirmative agreement and not just
61 failure to object (DHHS 2005), and informed consent given by parents or other responsible caregivers. The youth must also be made aware of their right to wi thdraw from the study at any time and their prerogative to refuse to engage in any part of the research. These are all aspects of the principle of respect for persons, a nd includes respecting the participants autonomy. An important theoretical basis of this study is the standpoint of the child or adolescent as an autonomous, meaning-making individual, yet one with certain vulnerabilities (Balen et al. 2006:44). This somewhat ambiguous standpoint of children in research necessitates that their voices be heard (Bal en et al. 2006:44). The protection of vulnerable populations during the research process may be achieved through a partnering relationship in which children can be heard during each phase of the research and thus have ownership of the data (MacNaughton and Smith 2005:116). Making judgments of each adolescents competencies, willingness, and comfort may be more easily discerned through the forging of these relations hips. In addition, the choice of methods will also reflect the attention that is given to prote cting the young people. The second ethical principle, beneficence, requires that research confer bene fits, and is sometimes paired with the avoidance of maleficence or the causing of ha rm. This is intended to guide research design, data collection, and presentation of findings in w ays that will benefit participants or others in society while doing no harm. The benefi ts to participants are linked to the third principle, justice, by tapping children and adoles cents for research in the first place. In attempting to protect them because of the t raits that render them vulnerable (age, inexperience, powerlessness), children have often be en excluded from studies in which their presence and participation would provide key
62 insights and results that only their perspective can reveal. For the adolesc ents living with perinatally acquired HIV, parents, caregivers, medical providers, and other adul ts can provide information that is significant, but they cannot tell us what it is like to be fi fteen and HIV-positive. The invitation to participate in research about their own disease management is a sign of respect, an opportunity for beneficence, and indeed an act of justice that need not be missed if the young people are approached and included from the perspective that they know, they analyze, they devise, they create, and they manage, and they can convey their experiences competently and cogently. The seriousness a nd urgency of optimum medication adherence, in terms of managing HIV in the present and for the future of these adolescents and others around the world, demand that they be included in research, for their perceptions will contribute to filling in the gaps tha t currently exist in improving adherence (Mullender et al. 2002: cited in Balen et a l. 2006:31). The findings and subsequent interventions may be felt by the participants themselves, may have ramifications for children born with HIV elsewhere, and m ay indeed be a matter of life or death. As with any research with human subjects, particularly qualitative res earch, the problems for participants and ethical dilemmas for the researcher cannot be tot ally anticipated and avoided at the outset (Murphy and Dingwall 2007), and in research that involves the lived experience of a serious, chronic, stigmatized disease like HI V, the potential for distress certainly exists. One must be aware and prepared for the situations in which the effects of an interview or other exercise are negative (Nic olas and Schilder 1997:88). The Florida Family AIDS Network is a multi-agency, comprehensive syst em of care, and the availability of social workers, mental health professionals, and ot her
63 clinical personnel is built into and supported by the network, and provided a safety net for the young people who might have needed or wanted counseling during the research project. Medical Ecology The research on children with HIV and their adjustment to and management of HIV disease is varied in its findings. Some studies show children with HIV having greater psychosocial problems than healthy counterparts, while others do not show a ny variation (Steele et al. 2007). Adherence issues may be successfully addresse d by some adolescents and consistently problematic for others. The wide variation in finding s on HIV in children and adolescents seems to point to the variability in childrens soci al, cultural, and medical environments, that is, the social organization and Law (ment ioned above) that underpin behaviours, rights and responsibilities (James and James 2004:49). This supports the necessity of studying perinatal HIV and disease managem ent among adolescents from a medical ecological perspective (McElroy and Towns end 2009; Panter-Brick 1998; Steele et al. 2007). The experiences of the adolescent, as the y occur in and are part of his or her social and cultural environment, can highlight the heterogeneity of these experiences and responses to illness (Hunt and Arar 2001) This framework places the HIV-positive adolescent at the center of proximal and mor e distal contexts that interact with each other and variously influence the child (Stee le et al. 2007). The proximal niche has direct effects on the childs agency, meaning making, and behaviors. Two of the more proximal niches in which the adolescent is significantly engage d are the family and the peer group. In following the theoretical perspective outlined above
64 in the anthropology of childhood and the multidisciplinary childhood studies, the child is placed center stage as an agentive social actor. The interactions of the child a nd his or her family members represent one stratum in which the medical, environmental, and social influences on the child can be interpreted, keeping in mind that the family i s part of the larger community and economic and political systems (Novilla et al. 2006). T he family is the locus of activities and beliefs related to health, including food a nd nutrition habits, smoking and alcohol use, and physical exercise, in addition to the social facto rs like parent-child relationships, parental controls and protection, and educational and othe r forms of support and encouragement (Christensen 2004). The family setting as the mos t immediate environment for the child may also extend to the HIV care provider for the HIV-positive child, since this person or team is often a continuous and regular presenc e in the childs life (Ledlie 2001; Merzel et al. 2008). The family and health care providers have initial and significant influences on the childs own health practices and his or her attitudes toward illness and illness management. The childs development within the family is examined through the familys activities rather than by the family structure, according to the ecocultur al perspective (Weisner 2002). This perspective, which focuses on the familys local situati on, displays the routines and problems that are part of everyday life, and the speci fic cultural tools that they have at their disposal to deal with the particular environment in whic h they live and act (Weisner 2002). The focus on activities and family dynamics allow s for the position of the child as social actor to be highlighted, as the familys health-se eking attitudes and practices shape the developing child (Christensen 2004). The famil y of the perinatally-infected child is a unique configuration, because the mother is nec essarily also
65 HIV-infected, and other family members may be comprised of infected and uninfect ed siblings and father. In addition, the family may have experienced the deaths of f amily members, and the infected adolescents caregivers may be extended family members (often a grandmother), foster parents, or other unrelated persons (Cohen 1994). Heal th as a resource and as a practice may be more or less restricted by the presence of HIV and its requirements, and the family dynamic and composition will affect the infect ed adolescents wellbeing and experience of HIV disease (Steele et al. 2007). Some families may integrate health-promoting behaviors and attitudes more successfully t han others, and it is the matrix of personal coping, supportive relationships, competing goals, and external mechanisms that determine how a particular family manages healt h needs and indeed how a chronically ill adolescent learns and exercises his or her own heal thpromoting behaviors (Christensen 2004). A second niche in which the child acts as social and cultural member and which is part of the medical ecological space which he or she inhabits is the peer group. The dynamics of the HIV-infected adolescent and his or her peer group include the shar ing and creation of unique cultural spaces and health practices that affect both the pos itive adolescent and his or her peers. Adolescents with perinatally-acquired HIV wi ll manage their disease according to the allowances and constraints imposed by their own a nd their peers schedules, attitudes, and understandings. They will also practice safe or risky sex based not only on knowledge and the influences of family and health care providers, but also on the peer culture and relationships in which such activities take place (Batt les and Wiener 2002; Dodds et al. 2003; Kyratzis 2004).
66 The peer group as cultural space is characterized by children of similar age and peer relationships are largely forged within the context of school. James et al. submit that childrens culture is distinct from adult culture, and emerges in and through the temporal, as well as spatial, interstices of adult social structures, but t his culture is constrained, too, by temporal and spatial structures of childrens own lives (Jame s et al. 1998:75). They cite in some detail Amit-Talais (1995) work with North American teenagers, which argues that young people have limited time in which to develop long and trusting friendships, and when child and adolescent peer groups are arranged by school grade and are thus similar in age, friendships with older or younger indi viduals are nearly impossible (Amit-Talai 1995; cited in James et al. 1998:76). The age-simil ar peer groups are very different from relationships that form in societies where s chooling is or was not a social institution, and where children could therefore have contact with and learn from people of differing ages and experiences (LeVine 1998). Children in American society create cultures and contribute to social and cultural cha nge, but this distinctive peer culture may be problematic in the kinds of knowledge transmission and social and personal growth that can occur. For the child or adolescent with a chronic, stigmatized condition like HIV disease, the constraints on the development of peer relationships are likely to be greater, because of the time and effort that mus t be devoted to illness management and the developmental delays and psychosocial challenges t hat may be present as a result of both medical and social (family) influences (New et al. 2007). These factors, in peer culture generally and in the peer relationships of the perinatally infected adolescent, demonstrate a complexity in childhood culture and i n the navigation of childhoods temporal and spatial labyrinth, and are implicated in the way
67 that HIV-positive adolescents conflate their illness identity and responsibil ities with their social identities and interactions. The medical ecology perspective demands examination of environmental influences beyond the family and peer group. The child is at the center of an environment composed of immediate contacts, situated in the larger sociocultural community, all of which are influenced by macro-level social, economic, politi cal, and ideological pressures (Steele et al. 2007). Though the child is a social actor in this environment, he or she is also an embodied individual who acts and reacts to biological forces in the physical environment. Part of the HIV-infected individuals medica l ecological reality involves his or her infectiousness, the effect of medicati on adherence on the degree of infectiousness, his or her own susceptibility to opportunistic infect ions and to reinfection with a different strain of HIV, and the effects of medication on the persons physical wellbeing and ability to function normally in everyday ende avors (McElroy and Townsend 2009; Armelagos et al. 1990). The human immunodeficiency virus is very responsive to antiretroviral therapy, becoming suppressed withi n weeks of therapy onset, and multiplying at the first sign of suboptimum therapy adherence (Williams et al. 2006:e1753), yet there is not a one-to-one correlation betwe en adherence and health measures (Steele and Grauer 2003:25). It also mutates and becomes re sistant to medications in response to adherence levels. The personal, social, and cultural resources and stresses that are part of the adolescents lived experienc e affect their ability to confront and cope with these aspects of HIV and determine how they manage their disease, maintain their health, and safeguards others, especially sexual par tners.
68 Resistant HIV, which can be the result of medication non-adherence, can be transmitted to sexual partners, so knowledge of resistance and the importance of maintaining adherence to stave off resistance and maintain low viremia is an important part of the infected adolescents disease management (Quinn et al. 2000). The socia l and biological aspects of successful HIV disease management have implicati ons for public health and the increase or reduction of HIV transmission. The medical ecology of HIV disease management places the HIV-infecte d adolescent in an actor-oriented position (Armelagos et al. 1990), encompassing the child as social actor espoused by anthropologists and other social scientists of chi ldhood studies. In a medical ecological context, health and disease [are situated] in a system of mutually interacting organic, inorganic, and cultural environments [and] are informed by the perceptions and social relations of patient, healer, family, and community. Insults can originate from organic, inorganic, and all aspects of the cultural environment, and host response to insults entails modification or use of resources within all of these environmental subsystems. (Armelagos et al. 1990:358) The perinatally-infected adolescent with HIV, having lived with the virus sinc e birth, has had some experience coping with the disease and its sequelae. However, the individual, the disease, the virus, and the social and physical environments are capricious and necessitate adaptive strategies as changes anywhere in the individual s environment occur. Adherence to medications is one such strategy and, in the case of HIV/AI DS, is currently the most effective medical strategy once a person has been infec ted. In looking at the wider AIDS epidemic, behavioral changes are an adaptive strategy a imed at preventing infection (Armelagos et al. 1990).
69 While medication adherence is the most effective health-promoting behavior for the HIV-infected individual, there are other adaptive behaviors that can facilit ate successful adherence. These are located in the micro-, mesoand macro-sys tems concentrically circling the adolescent (Steele et al. 2007), in which people, community situations, and societal economics, politics, and ideology interact and influence the individual in his thinking and agency. If the resources are available at thes e various levels of influence to enable an individual to adopt health-promoting behaviors and attitudes, then he or she will thrive in the face of the medical and social obstac les presented by life with HIV (McElroy and Townsend 2009:306). The proximal levels of family, health care system, and peer groups have been discussed elsewhere. At the more distal levels, health care accessibility, health policy, economic conditions and social attitudes toward illness are some of the features which influence the action s and interactions of the individual and his or her family, social, and medical networks ( Pontali 2005; Steele et al. 2007). In the medical ecology of HIV disease management, the cultural system is perhaps the key system affecting perinatally infected adolescents (Arm elagos et al. 1990). From a clinical and logistical perspective, the young people who are receiving c are as clients in the Florida Family AIDS Network are provided with the resources to maintain their health and minimize some of the previously common adverse effects of the medications and of the virus. However, the cultural system situates their embodie d experience within their social relationships through the beliefs and other types of information that guide them to manage their HIV disease. Cultural beliefs may facilitate or thwart the adolescents efforts at successful disease management and s ubsequent
70 health outcomes. For example, culture dictates secrecy in some families, yet disclosure to peers has been correlated with increased CD4 counts in HIV-infected individua ls (Sherman et al. 2000). There are family complexities and economic difficulti es that may impede regular clinic appointments and secondary health-promoting behaviors such a s good nutrition. Whether adolescents are resilient in the face of the insult of HI V depends in great part on their cultural resources their beliefs about self, their s ocial support, the importance of and dedication of resources to health that they, their families, and communities (and society) defend for it is within culture that much of the behavi or surrounding health and disease is played out (Armelagos et al. 1990:358). Medical ecology brings together the physical and biological, the social, and the cultural e ffects of HIV, which merge in and around the infected adolescents to determine whether and how well they adhere to their medications, manage their disease, and reach an o ptimum level of psychosocial wellbeing and physical health. Health is a multidimensional phenomenon (Novilla et al. 2006:38), and must be understood in it temporal and spatial situatedness. While obstacles to successful di sease management exist which are beyond the individuals control, in the proximal but especially in the political economic sphere, the possibilities for essentia l social change also exist in collective action (Armelagos et al. 1990:358) that extends beyond and int o the various social settings of the ecological environment. However, at the cente r of the overlapping systems and ideologies that comprise this medical ecologica l environment are the perinatally-infected adolescents with HIV disease, who activel y constitute a world that is at once the same as, and different from the world their elders know (Toren 1993:463; emphasis in original). Their goals, resources, capacities, conceptualiz ations,
71 and experiences are at the heart of the study of adolescent adherence and di sease management, and as the study of the aids and barriers to optimum disease managem ent is pursued, taking into account the myriad ecological factors influencing the li ves of these young people, it is mandatory to approach these persons as partners in the research, recognizing their power and control both in their lives (Armelagos et al. 1990: 358) and in the research process. The theoretical perspective adopted by the anthropology of childhood and social scientific childhood studies, placed within a medical ecological framework, makes this possible.
72 3 CHAPTER 3: METHODOLOGY AND RESEARCH ETHICS The methods used in qualitative research are many, and it is critical to choose methods that facilitate the collection of data needed to answer the specified research questions. Since children and adolescents are viewed as competent social actors, and are situated in distinctive environments where their personal stories unfold, individual interviews will allow the individual voices of the participants to be heard (Franc e 2004:177). Since the medical ecology of disease management is the framework for examining each adolescents beliefs and behaviors, the interviews must be sem istructured and open-ended to permit the adolescent to discuss those cultural aspect s of his or her environment and social relations that he or she considers relevant (Sankar et al. 2006: S59). Open-ended interviews may also foster feelings of control for the youn g people, who, like women, still feel powerless, without much to say (Reinharz and Chase 2003: 77). The open-ended interview is also the setting in which adolescents are allowed to sketch out the big-picture issues living with HIV, growing up and being an adolescent with HIV (identity formation), and revealing the problems that a rise in managing their disease. It provides the needed latitude for the participant t o narrate his or her subjective illness experience (Conrad 1990). Interviews with adolescents may include some stumbling blocks. Adolescence is a period of personal and social development, when young people are constructing identities and strengthening their sense of self, and if this is especially conflictual for
73 them, they may bring an antagonistic attitude to the encounter with an adult intervi ewer (Weber et al. 1994:43). Privacy and confidentiality may also be very important f or youth, who are sensitive to peer influences and may be reticent about sharing cer tain things if they thought peers would find out (Weber et al. 1994:43). The assurance of confidentiality and a location for the interview that is safe may assuage the adolescents concerns about privacy. Qualitative studies of medication adherence among people with HIV are underrepresented in the adherence literature (Beusterien et al. 2008; Sankar et al 2006). Adherence to medication remains a problem across the spectrum of diseases, incl uding HIV (DiMatteo 2004), and points to the need to examine the social and cultural contexts in which disease management behaviors occur, and which affect if and how these behaviors occur. This qualitative study of adolescents with perinatally-acqui red HIV is an acknowledgment of the complexity of young peoples lives, and the methods employed will allow a range of questions to be posed not just what a person does, but why, how, where, and when (Lehoux et al. 2006:2092). This qualitative research also allows these young people to express themselves on issues that they consider to be important in their lives and for their health, and insofar as the data reveal pot ential areas of improvement for their disease management, it is perhaps one of the most ethic al things we can do for them. Role of the Researcher: Reflexivity and Positionality The management of HIV disease that is the focus of this study is an experie nce that I, the researcher, share with the research participants. While our experiences are not identical, this shared phenomenon of living with HIV may have an impact on the
74 collaborative aspect of the research, and allow for identifying dilemma s as they arise. The reflexive position of the research will be assumed insofar as it can provide insights, impressions, ideas, and hypotheses [b]ut insights and impressions are not knowledge; they are paths to investigation (Salzman 2002:808). The study of adolescents management of HIV disease is not the study of a middle-aged womans HIV disea se management, but my position as a fellow HIVer may facilitate an empathi c understanding of the factors that help or hinder medication adherence and other health-promoting behaviors. The intersubjectivity that obtains from the interactions of t he researcher and the participants may enrich the data that are collected, but i nterpretation and understanding of the data will reflect empiricism, not reflexivity (Sal zman 2002:808). It is not my intention to insert my experience and HIV identity into the research, but rather to recognize the standpoint from which I approach the researc h (Hendrick 2000). Likewise, my position as an HIV-infected individual, because of its potential influence on the research process, relationships, analysis, and recomm endations, merits disclosure both to the participants and to any readers of the final resea rch product. Identification and awareness of ones standpoint during the research process particularly that position which is shared with the participants and is the topic of the research, is important because that facet could affect how the research is approa ched and how the interviews and other interactions play out. It could also affect the qual ity of both the data that is ultimately collected and its eventual analysis. One risk t hat I faced as an HIV-infected person is that of projecting, even indirectly, my biases onto the i nteractions. There was also the possibility of positioning myself as the knowing or capable HIVpositive person against the adolescents less knowing position. Researchers have
75 addressed the differences that separate adults and children by suggesting va rious adult stances vis--vis the children they are studying. Mandell cites three possi bilities in which adults position themselves closer to the childrens world in an inverse relations hip to the authority they wield, the complete involvement in childrens worlds being the leas tadult role (Mandell 1988:433). Eder and Corsaro suggest what corresponds to Mandells intermediate role, in which adults adopt a form of detachment by avoiding adult roles of authority [and thereby] reduce the inherent power imbalance between adults a nd children (Eder and Corsaro 1999:527). The reflexive approach continually reminded m e of the position I deemed best to occupy, and allowed me to compare it to the position I was occupying as the research proceeded. While I attempted to keep my pos ition, both as adult and as HIV-positive person, at a distance from the empiricist vision (G ellner 1988; quoted in Salazar 2002:812) that guided the research, I reflexively recognized my role and the effect that it had on my approach and responses. Reflexivity throughout the research process therefore attended to the continual effort I made to give the participants primacy and maintain a collaborative partnership in which we shared authority (Etherington 2007). Reflexivity, as a process throughout the research, is a tool that researcher s can use to help them to remain aware of ethical issues as they arise; it is achiev ed by continually questioning the ontological and epistemological positions that they take as rese archers in the research process (Guillemin and Gillam 2004). It keeps them aware of the relationship they have with the research, the participants, the context, and the data at every step of the process, so that ethical or other dilemmas can be clearly id entified, appreciated, and addressed. One of the ethical dilemmas that are possible in res earch
76 with young people is the fear or discomfort that these participants may f eel in expressing themselves, particularly when it involves disagreement or displeasure. In addi tion to the ethical dimension of protecting young research participants, this dilemma ha s implications for the quality of the data. Reflexively considering the situat ion involves questioning the knowledge and how one comes to know it (Guillemin and Gillam 2004). The power relations that exist adult/child and researcher/participant do influence the research process, and need to be clarified and revisited to ensure a fair and product ive environment for children (Woodhead and Faulkner 2000). There is an ethical conundrum in designing and carrying out research with a population considered to possess less power than adults and less power as participants than the researcher, while maintaining that this population does possess power and competence. The UN Convention on the Rights of the Child sets out in Article 12 that parties to the Convention must assure to the child who is capable of forming his or her own views the right to express those views freely in all matters affecting the chi ld, the views of the child being given due weight in accordance with the age and maturity of the child (UNCRC 1989). The right to contribute to research, however, opposes to some degree the need for protection. The research process is composed of many steps that suggest varyi ng power and partnership arrangement at different stages (Karnieli-Miller et a l. 2009). Thus, for example, the selection of methods for a particular project, generally the doma in of the researcher, might be one of the initial areas of collaboration in which partici pants voice their opinions and preferences regarding possible methods (Hill 2006). Some researchers, in fact, underscore the child-centredness of research and chi ldrens involvement in development and implementation of research (Lewis and Lindsay 2000:
77 cited in Balen et al. 2006:31). Data analysis rests with the researcher, but va lidation of the findings may or may not include participant input (Karnieli-Miller et al 2009). The structure of the research relationships may be drawn up at the beginning of the st udy, but as with the process of consent (Helseth and Sletteb 2004), power sharing and level of participant participation may also need to be renegotiated during the project Reflexivity on the part of the researcher includes asking herself about her role at different s tages, and thus her participants roles, and revisiting what she wants to know and how she will proceed in discovering it (Etherington 2007). Florida Family AIDS Networks Perinatal Clients The Florida Family AIDS Network (FAN) is an HIV/AIDS service progra m comprised of social service and clinical agencies that provide care to women, chi ldren, and families infected with or affected by HIV and AIDS in Hillsborough and Pinell as Counties in west central Florida. The program is funded by the Ryan White HIV/ AIDS Treatment Extension Act, Part D, and has been in operation since 1992. The program currently serves about 1200 clients, who receive primary and specialty care at one of five clinical sites, and supportive services from one of two social service agencie s that help clients maintain their health and continuity of care. Originally begun to address the perinatal transmission of HIV, the program has evolved to serve more adolescent s and adults than infants and young children. FAN includes pediatric clinical services for HIV-infected persons up to t he age of 24, and provides these services to the majority of children and adolescents at two University of South Florida Department of Pediatrics clinics in Hillsborough and Pi nellas counties. The FAN pediatric clinics have a policy to disclose HIV status to childr en by
78 age 13 regardless of parental preferences. Clinical staff work with parents, c aregivers, social workers, and mental health personnel to develop a plan for disclosure of HIV status to children, and generally they begin the process and discussion well in a dvance of the actual disclosure. They also counsel children and adolescents on medication adherence and safer sexual behavior. There are currently 163 perinatally infected persons enrolled in FAN, of wh om 130 are between the ages of 13 and 24, and their demographic characteristics, age, gender, and race/ethnicity, are shown in Table 3.1. Figure 3.1 shows the current ages of the perinatal FAN clients and their HIV disease status. The numbers of perinat ally infected persons in FAN mirrors the perinatal population living in Florida (Figure 1.3). The FAN perinatal population, as well as the study sample, is comprised of a highe r percentage of girls than boys. Evidence suggests that mother-to-child tr ansmission of HIV at birth is significantly higher in girls, though the precise mechanis ms targeting females in utero are not known (Biggar et al. 2006; Taha et al. 2005; Thorne and Newell 2004). Table 3.1 FAN Perinatal Clients Asian, More than one race, Other, or Not Specified FAN Program (N=163) Number Percent Gender Female 94 58 Male 69 42 Race/Ethnicity Black 97 60 Hispanic 28 17 White 29 18 Other 9 5 Age <2 1 <1 2-12 29 18 13-24 130 80 >24 3 2
79 The vast majority of FAN clients are living near the federal poverty level a nd are receiving Medicaid benefits. Among the perinatal clients, about 80% live below at, or slightly above the poverty level, and about 74% are on Medicaid. Among the participants in this research study, 88% receive Medicaid benefits, and about 82% are at 120% of the poverty level or below. There are 14 perinatal FAN clients with private insur ance, and only one of them is in the research study. FAN Perinatal Clients0 2 4 6 8 10 12 14 16 18 2003567891011121314151617181920212223242527Age Number CDC defined AIDS HIV-positive (AIDS status unknown) HIV-positive (not AIDS) Figure 3.1 Current FAN Perinatal HIV and AIDS Clients (N=163) Study Participants Seventeen adolescents participated in the study, sitting for an interview las ting from thirty minutes to just under two hours, with most lasting for one hour. Participants were interviewed in their homes, at their case management agencies or other com munitybased organization, or at the researchers university-based office or othe r campus location. Table 3.2 shows the demographics of the adolescents in the research study.
80 These young people lived in households with a variety of primary caregivers and other relatives. None of the adolescents were living in a household with both biological parents. Eight of the seventeen adolescents were living with their biological mot hers at the time of the study, and three were living with their biological fathers. One was living with an aunt and one was currently living with a cousin but had lived for most of her life with her grandmother. The four remaining participants were living with adopti ve or foster non-relative mothers. The six participants who were not living with a biologi cal parent had been with their caregivers since they were young children. Three par ticipants had a biological parent with whom they were not living, but they knew and had contact with them. At least ten of the seventeen participants had lost one or both parents. Table 3.2 Adolescent Participants Numbers rounded to equal 100 Research Participants Number Percent* Gender Female 13 76 Male 4 24 Race/Ethnicity Black 12 70 Hispanic 2 12 White 3 18 Age 13-17 10 59 18-24 7 41 Primary Caregiver Biological Mother 8 47 Biological Father 3 18 Other Relative 2 12 Non-Relative/Adoptive 4 23
81 Recruitment of Participants The study sample of adolescents was drawn from clients of FAN who were between the ages of thirteen and twenty-four at the time of the study and who were perinatally infected with HIV. Prior to recruitment, the support and permission to conduct this research were obtained from the principal investigators of the FAN grant and from the FAN administrator. Subsequently, the research proposal was presented for approval to the medical director at the USF pediatric clinic, and to the director or supervisor at the case management agencies that are part of the FAN network, and it was submitted to and approved by the USF Institutional Review Board. The FAN programs perinatally-infected adolescents include 73 females and 57 males ranging in age from 13 to 24. Close to 60% of the youth are Black, 18% are Hispanic, 17% are White, and 6% are more than one race or other. The research study was presented and discussed with the clinical staff at the University of South Flor idas Pediatric Services in Tampa, and the FAN social worker at the clinic ass isted in informing the adolescents about this research when they attended the clinics for their routine appointments. Additional collaboration was sought for recruitment of youth from the Tampa Hillsborough Action Plan (THAP) and the AIDS Service Associati on of Pinellas (ASAP), the two case management agencies where many of these adol escents receive support services. The clinical care providers were asked to participate in the study, because the y are a key source of information and guidance for these young people, in terms of their s exual, reproductive, and general health, adherence to medications, and the complexities of H IV status disclosure. A trusting relationship between the clinician and the patient c an affect
82 the patients success at assuming responsibility for his or her disease manage ment. The five clinicians who cared for adolescent patients at the USF pediatric clini c were each asked to sit for a semi-structured interview. One focus group of biological mothers was included in the study in order to explore the unique dynamic between biological mothers and infected children. These mothers are likely to be taking antiretroviral medications, will have had their ow n experiences, good or bad, with those medicines, and may harbor guilt about transmit ting the virus to their children. How they view and approach medical treatment for their children may be dictated by these experiences, and could well be a factor in the knowledge and attitudes that their children will bring to their HIV management and adherence to medication regimens. The perspectives and experience of the pare nt, especially the biological mother, regarding medications, health care provide rs, social support and influence, and cultural beliefs can shed light on the child or adolescents potential to accept and abide by the directives of the medical care providers (Wrubel et al. 2005). Biological mothers of infected children were recruited from among those wome n who were FAN clients and whose records indicated that they had an infected child. F rom this group, recruitment was carried out through the case management agencies whe re they were receiving services. Sampling The purposive sample was made up of those adolescents who were informed of the study at the clinic or by case managers, and agreed to participate. The procedure for recruiting participants at the clinic involved informing each perinatal pati ent aged 13 to
83 24 about the study when they came to their clinic appointment. In addition, the social worker examined the clinics appointment calendar and telephoned patients who were scheduled to attend upcoming clinics. When a patient agreed to participate, the socia l worker provided me with a telephone number and I attempted to establish contact with the patient or, if the patient was under eighteen, with the patients parent. Of the ei ghteen patients approached at the clinic or telephoned by the social worker, two declined t o be part of the study and one was hesitant and was not contacted again. Of the remaining fifteen, contact information was given to me for fourteen adolescents, and ten wer e enrolled and interviewed. The remaining four teens agreed to participate, but cont act with the teen or the teens parent was unsuccessful after several attem pts. The mother of one of these four teens subsequently participated in the biological mothers focus g roup, and at that time, she agreed to let her daughter be interviewed. Recruitment and enrollment in the study continued according to a schedule that allowed for four months of recruitment and data collection. When data collection was terminated, eleven adol escents recruited through the USF clinic had been interviewed. In order to expand the possibilities of engaging more adolescents within the stud y population, the FAN case managers at THAP and ASAP were also approached and asked to call any of their clients who fit the studys eligibility paramete rs. In an effort to connect with adolescents within the time allotted for the data collection, THAP ca se managers were asked to call residents of Tampa, and ASAP case managers were asked to call St. Petersburg residents, before calling residents of outlying counti es. In all, there were eleven active perinatal clients seen by three case managers at TH AP, and four seen at ASAP by two case managers. Contact information for five THAP clients was
84 obtained, and four were contacted and agreed to participate. One was contacted severa l times, and messages were left for the caregiver, but contact with the careg iver was never established. At ASAP, contact information for two perinatal clients was obtained. T hus, from the two case management agencies, six clients were enrolled and intervi ewed. Data collection was terminated before any other recruitment efforts were ma de with the remaining clients at the two case management agencies. All five clinicians who regularly cared for adolescent patients at the US F pediatric clinic were interviewed. A list of thirteen biological mothers who had been actively case managed within six months of the focus group date was given to case managers, who were asked to contact their clients. The case managers notified me when a client agre ed to participate. When seven women agreed to participate, enrollment was stopped. One additional woman had been contacted, but was unable to attend the focus group on the scheduled date. Six clients attended the group, and one was sick on the day of the focus group and could not attend. Four of the mothers who participated in the focus group had children who were interviewed for this study; two did not. The participant groups and methods used are summarized in Table 3.3. Table 3.3. Summary of Study Participants Participant Group Number of Participants Methods Used Adolescents 17 Semi-structured interviews Medication & adherence questionnaire Viral load & CD4 measures Clinicians 5 Semi-structured interviews Biological mothers of infected children 6 Focus Group
85 Limitation of Recruitment Process An important limitation of the recruitment process is that the adolescents w ho were approached and asked to participate were those who were attending clinic appointments or had recent and regular contact with their case managers. Those who were not attending clinic or had been lost to clinic and social service care we re not approached, and it is those who were hard to reach who were likely to have had very different management styles when it came to their HIV disease. Thus, the s tudy participants represented a bias in that they were more likely to be more con scientious about their care and treatment. Research Techniques and Data Collection Upon agreement and consent to participate (parental consent and child assent were obtained for participants under 18, in accordance with IRB guidelines), the adolescents filled out surveys (Appendix A) before sitting for an in-depth, semi structured interview. The interviews took place at the participants home, at one of the case management agencies, or in a private room on the USF campus. Focus groups wit h adolescents were originally included in the methodology, but attendance at the first two scheduled groups was too low and the focus groups were removed from the methodology. However, the three adolescents who attended the first focus group sat for a group interview (due to time constraints, individual interviews were not possible). Ea ch participant responded individually to the questions and probes. The three adolescents who showed up for the second focus group were interviewed separately. Mothers (biological and adoptive) were present at four of the adolescent interviews. Three were present either intermittently or at the end of the interview, as the
86 interviews took place in the home. The fourth mother was present to aid her daughter, who had physical disabilities that made understanding her responses difficult. He r mother repeated answers when necessary, and when she added her own comments, concurrence was sought from the adolescent. While the presence of the mother altered the setting of the interview, each of the adolescents answered all questions posed and none indicated any unwillingness or inability to address any of the topics. Some of the mothers comments were used, along with the data from the biological mothers foc us group, to provide family context in which adolescents experienced and coped with their HIV disease. More than half of the participants were under 18 years of age, so as children, the y were considered to be in the category of a vulnerable population, and thus, in accordance with Federal Research Guidelines, special efforts were made to protect them. Every effort was made to assure the participants that they could withdraw fr om the study at any time without penalty, and could freely refuse to answer any questions of t heir choosing. In addition, and importantly, they were informed that the content of their interviews would not be shared with parents or health care providers. All data collected from the participants has been protected by storage in a locked file cabinet, whi ch is secured in a locked office. All identities have been protected by changing part icipants names, and any data shared publicly would be aggregate data or data using pseudonyms Thus, respect for the adolescents, demonstrated by both maintaining their privacy and safeguarding the confidentiality of their information, was assured (White ford and Trotter 2008).
87 The FAN project utilizes CAREWare, a software program which connects all of the FAN agencies to a central database housed on a secure server at the University of South Florida. CAREWare contains client-level clinical and supportive service dat a, as well as demographic information, and is equipped to generate customized reports on demographic indicators and clinical performance measures. Reports of two cl inical performance measures, the viral load and the CD4 (T cell) count/percentage, we re generated from CAREWare data for the research participants. Consent was also obtained from the women who participated in the focus group, and protection of data was assured. Women were reminded that all information shared i n the group was confidential and should not be shared outside the group. HIV-Positive Adolescents, N=17 FAN Data and Chart Reviews CAREWare reports were run for all participants on demographic and clinical information, including age, ethnicity, HIV/AIDS status, primary caregiver viral load and CD4 counts, and medication history. Questionnaires Questionnaires were administered to all participants, which included demo graphic information as well as questions about health care, medications, and adherence reca ll. Adherence recall used the Treatment Interview Protocol, or TIP (Marhefka et al. 2004), which was adapted for use with the adolescent participants (Appendix A). Semi-Structured Interviews Individual interviews provided the participants with the opportunity to tell their stories of living with HIV and managing their disease. It is well known that adole scents,
88 even those who are aware of their HIV-positive status, engage in risky sexual be havior, despite their knowledge of HIV and STI transmission and safer sex practices ( Murphy et al. 2001). Since the transmission risks involved in unprotected sex are increased when HIV-positive people have elevated viral loads, the issue of medication adherence mus t also be addressed. It has been shown that perfect adherence to a medication regimen i s rare even for adults, and tends to be more problematic for adolescents (Merzel et a l. 2008). The issues surrounding adherence may be distinct for the perinatally-infe cted teens, since they have lived with HIV since birth and have had family members live w ith and perhaps die from AIDS. The interviews included questions about their attitudes and behavior, as well as external influences, regarding medication adherence. The formulation of the interview questions was guided by the medical ecologic al perspective in which the research was situated (Brown et al. 2000; Williams et a l. 2006; Steele et al. 2007), and by literature pointing to the main factors impinging upon the adolescents adherence to medication and management of HIV disease personal meanings and identity, social influences among family and peers, clinical care and relationships (Dodds et al. 2003; Pontali 2005), and attitudes and behaviors regarding their chronic disease and treatment (Pontali 2005). In order to understand if and why they engage in risky medical and social behaviors, it was necessary to discover the meanings that these adolescents at tach to HIV, their attitudes toward medication and adherence, and their behavior and communica tion within sexual relationships. The interviews probed for the participants percept ions of risk, social pressures, and decision-making regarding health, and revealed wh y and when youth choose to take health risks, particularly those related to adherence. The reduc tion
89 of risky sexual behaviors in this population, while conferring health advantages on th e youth themselves, is also aimed at protecting partners and stopping the spread of H IV. For individuals already living with HIV, particularly young people and those born wi th HIV, the notion of protecting others in a sexual relationship is perhaps less salient t han that of procuring certain social benefits for themselves that may involve ris ky behaviors. Living with an incurable, stigmatized disease may color the decisions these adolescents make, so it was important to understand whether they experienced stigma, and how they felt about and coped with stigma and with their disease overall. Therefore, the inte rviews included questions about living with HIV on a daily basis and within their social environment. Thus, the interview guide (Appendix B) included open-ended questions related to adherence, living with HIV, stigma, outlook and the future, sexuality, and risk, as we ll as questions concerning family, peer relationships and school, health care and relat ionships with providers, and other contextual aspects, such as social support and health care access. Clinical Care Providers, N=5 Semi-Structured Interviews Adherence is a topic routinely addressed by clinical providers and medical case managers, with whom HIV-positive adolescents have regular contact. The provider-patient dyad can be one of the most important relationships for the perinatally-inf ected patient (Dodds et al. 2003:43), and so the communication dynamics and the content and presentation of adherence and health risk counseling can be very influential in the acceptance of adherence responsibilities by the adolescent. Therefore, s emi-structured
90 interviews (Appendix C) covering these topics were conducted with providers in orde r to ascertain the needs and possibilities for future implementation of such service s. Biological Mothers of Perinatally Infected Adolescents, N=6 Focus Group Mothers had the opportunity to discuss their concerns, beliefs, and attitudes regarding HIV biomedical health care, antiretroviral therapy, and their own l ived experience of HIV management. In addition, they discussed HIV disclosure to their children and their childrens health care. The focus group guide is found in Appendix D Data Analysis All of the adolescent and clinician interviews, as well as the mothers foc us group, were transcribed and entered into the qualitative analysis software, Atl as.ti, Version 6. Transcripts were read, reviewed, and coded; codes (Appendix E) emerged from the studys research questions and hypotheses, as well as from a review of relevant literature. Codes and accompanying quotes were examined in order to compare a nd contrast the experiences of the adolescents. The adolescents were then divided into contrasting groups based on the studys hypotheses: earlier vs. later disclos ure, family acceptance vs. family ambivalence, peer support versus peer non-support, and so on. Analysis of the adolescent interviews, in keeping with the theoretical pers pective of medical ecology, was also conducted individually in order to situate each adolesce nts distinct lived experience of HIV disease management within his or her personal and social spheres of influence. The comparison analysis and the individual analysis we re undertaken in order to identify the variables which had an association with the
91 adolescents disease management, defined by the two most salient dependent varia bles, medication adherence and disclosure of HIV status to others, especially sexual pa rtners. Concurrent with the qualitative analysis of the interview data was the exam ination of two external biological variables for each adolescent: viral load and CD4 (T c ell) count over time. Viral load was an important indicator of medication adherence, and CD4 count gave a general view of health status. Analysis of the clinicians interviews and the biological mothers focus gr oup transcript were done similarly to the adolescent analysis, with codes used as identifying themes. The information from these data was used as contextual background in the discussion of adolescents experiences with HIV disease management. Since time and logistics did not allow the inclusion of the participants as par tners in each phase of the research process, it was especially important to affir m their lived experience of HIV disease by highlighting their voices in the analysis a nd discussion. By using their own words throughout, the particularities of their experiences were safeguarded, and acknowledged their social competence as well as the nuance s of their social spheres of influence. Study Limitations This study was limited by the fact that the adolescents who were recruite d and enrolled in this study were among those FAN clients who were scheduling and keepin g appointments on a regular basis. They were approached when they came to the clinic or were called if their appointment was approaching. Disease management a nd its facilitators and obstacles might have been very different among adolescent s who had not been in care for an extended period of time. Also, the seventeen adolescents who wer e
92 enrolled were all in good health, and all but one had fair to excellent immune function. Adolescents with poorer health indicators may also have revealed very differ ent lived experiences managing their HIV disease. The study was also limited by the small study sample and the fact that each adolescent was interviewed only once. In retrospect, particularly for adoles cents, triangulated data collection, such as interviews supplemented by drawing, fr ee listing, and pile sorting, would have produced more nuanced data, and the adolescents might have been more uninhibited in the drawing, free listing, and pile sorting exercises t han in the one-on-one interview. Also, focus groups had been planned but did not materialize; they would have provided a venue for the expression of the culture of adolescence and elucidated some of the shared cultural domains of HIV experience, such as disclos ure, stigma, and adherence.
93 CHAPTER 4: RESEARCH RESULTS Adolescent Data The adolescents interviews revealed the complexity of their social, person al, and cultural environments and the factors that intersect in different ways to make e ach persons lived experience and management of HIV complex. While the small study sample precluded causal connections between a personal attribute, such as age a t disclosure, or a medical element, such as understanding of medications and labs, and successful adherence, some factors suggested subsequent success at adherence and overall management of HIV disease. The myriad influences on adherence and diseas e management confirmed the need to look more comprehensively at the medical/ecolo gical situation of each adolescent in order to discover how best to ensure success for these young people. The primary indicator of the participants management of their HIV disea se was the level of adherence to their antiretroviral (ARV) medication regime n. All of the questions posed during the interviews were designed to reveal the factors in the individuals lived experience which affected their ability to take their medi cations as prescribed. These factors will be presented in response to each of the studys h ypotheses. Below in Table 4.1, the participants names and ages, and their adherence level, as evidenced by lab measurements of viral load, are listed. Viral load is measured usi ng an HIV RNA assay that generally measures HIV levels as low as 50 copies ( or 48 in some tests) of HIV-1 RNA per milliliter, though more recently, viral load tests have been
94 developed that can detect even fewer than 50 copies (Pascual-Pareja et al. 2010). An undetectable viral load, which is less than the level of detection of 50 (or 48) copie s, indicates successful viral suppression, and is achieved by a patients practice of optimum adherence. Studies have indicated that at least 95% adherence is necessary f or viral suppression (Bangsberg 2006), though there is evidence that lower adherence can achieve suppression, depending on the class of medications comprising the regimen (Maggiol o et al. 2005). Nevertheless, high adherence to medications is necessary for vira l suppression and low adherence increases the risk of a detectable viral load, i.e., the failure t o suppress the virus (Martin et al. 2008; Bangsberg 2006) and the risk of viral resistance (V einot et al. 2006; Quinn et al. 2000). If optimum adherence is being practiced and viral suppression is not achieved, then resistance to one or more drugs is suspected. Among the study participants, 47% had undetectable viral loads according to the available data. Among all of the per inatal patients at the USF clinic, 65% were found to be undetectable, according to one of the nurse practitioners, who had examined the clinics data. The last two columns in Ta ble 4.1 are participants own recall of skipped medications in the two weeks prior to the interview and estimated skipped medications overall. This recall of skipped medicat ions was recorded on the Adolescent Medication Questionnaire (Appendix A), adapted from the Treatment Interview Protocol (Marhefka et al. 2004).
95 The measure of adherence was taken from the participants records of their viral load tests. Optimum adherence will maintain an undetectable viral load, that is, be low 48 or 50 copies of the virus in the blood, unless viral resistance is ascertained. When the viral load spikes into the detectable range, it is likely that adherence h as fallen. The viral load responds quickly to this fall in adherence, as evidenced by Bridget. Her viral loa d 2 Participants names have been changed to protect t heir privacy. 3 Undetectable is less than 48 or 50 copies/ml, depe nding on the commercial test. 4 Bridget had 9 consecutive undetectable viral load tests over tw o years, but her last two were detectable. 5 At least 2 consecutive undetectable viral loads an d others under 1500 copies/ml. 6 Viral loads above 1500 copies/ml 7 Skipped medications in the previous two weeks were due to an unplanned 5-day stay at a friends house 8 Olivias mother recollected having to remind her d aughter often to take her medicines. However, Oliv ias medications may have stopped working, as her CD4 c ount had decreased continuously to extremely low levels, in addition to her failure to achieve viral suppression. She began a new medication regimen s hortly after her interview. Table 4.1 Study Participants and Adherence Participants Name 2 Age at Interview Adherence (Based on VL) Adherence Recall Days Skipped Medications, Last Two Weeks Adherence Recall Days Skipped Medications Overall, per month Paula 13 Undetectable 3 1 1 Lucy 19 Undetectable 0 0 Rachel 16 Undetectable 0 0 Valerie 16 Undetectable 0 0 Nina 17 Undetectable 0 0 Mark 14 Undetectable 0 1x/3 months Bridget 18 Undetectable 4 0 1 Katie 22 Good 5 2-3 3 or more Jeff 16 Good 0 0 Vanessa 16 Good 0 0 Angela 17 Fair 6 0 1x/2 months Stephanie 20 Fair 2-3 3 or more Diana 19 Fair 4 or more 7 2 Zo 16 Fair 2-3 3 or more Olivia 13 Fair 0 8 0 Keith 18 Medication Stopped N/A N/A Sean 20 Medication Stopped N/A N/A
96 was consistently undetectable, when suddenly it spiked to about 7000 in one of her recent lab tests. Records show that she admitted to not taking her medicines regularly. Ea ch of the study participants viral loads, CD4 (T cell) counts, and medications were e xamined from the data entered into the FAN CAREWare database. The graphs displayi ng each participants viral load and CD4 count/percentage over time are found in Appendices F and G. Biological Mothers Focus Group The four main topics on which the discussion centered were mothers disclosure to their children, the health care system serving them and their children, mothers medication adherence, and concerns about institutions that were involved in research on HIV and treatments, vaccines, and cures. The women also alluded to stigma while discussing their experiences and difficulties living with HIV. The mothers responses and insights are integrated into the results of the adolescent interviews, as they relate to the perceptions and experiences prof fered by the adolescents. Before the summary of findings in each section, additional result s may be included from the mothers focus group. Clinician Interviews The clinician interviews were conducted with two physicians, Dr. Flynn and D r. Lane, and three nurse practitioners, Carol, Ann, and Ed. 9 One of the nurse practitioners had a background in adult medicine, so his adolescent patients were all aged sixteen to twenty-four. The interviews elucidated the substance of the adolescent clinic visit, the clinicians perspectives regarding the HIV management issues of adolescent patients, and 9 The names of the doctors and nurse practitioners a re pseudonyms.
97 the relationship style of the clinician vis--vis adolescent patient. Asi de from the physical examination, the clinic consultation included a discussion with the pati ent (and often the caregiver) of medication and adherence, lab tests, psychosocial iss ues, including sexual activity and risky behavior, and other issues specific to the patient. The encounters, according to the clinicians descriptions, were comprehensive and typically longer than what might be expected in an adult clinic. Responses referring to how the clinicians communicated with their adolescents patients were examined to de termine the extent to which the patient appeared personally engaged in his or her care and tre atment, and the level of power and control that the patient assumed or was given. Results Adolescent Engagement, Provider-Patient Relationship, and Adheren ce (Hypothesis 1) The level of engagement by the adolescents in their health care and the leve l of trust and interaction between them and the clinicians who regularly cared for t hem were hypothesized to have a positive influence on their adherence behavior. It was posit ed that the greater the youths actively participated in their care and treatment, t he better their adherence would be. Likewise, greater trust and interaction between partic ipants and their clinicians during their medical appointments would have a positive impact on thei r adherence. Hypothesis 1 reads: The active participation of the adolescent in his or her health care and treatment plan, and the level of trust in his or her health care providers have a direct relationship on the adolescents understanding of the importance of adherence and his or her acceptance of adherence responsibility
98 The active participation of the adolescents in their own health care and treat ment plan was measured by the level and type of responsibility they had in taking thei r medicines. More basically, an active rather than passive disease managem ent style was reflected in their knowing the names and doses of the medicines they were taking understanding what their lab tests meant, and being able to discuss viral load, CD4 count and viral resistance. Provider trust was expanded during the interviews to cove r the overall relationship that patients had with their HIV clinical providers, including t he adolescents rating of their providers understanding of their HIV-related i ssues and challenges, the providers efforts to discuss and understand the patients lives outside of the clinic, patients complaints about their provider or medical visit, and the patient s comfort and desire to ask questions. Adolescent Medical Knowledge Table 4.2 provides an overview of the participants medical knowledge, which is discussed in the following sections. Medications The assumption that perinatally infected adolescents would know the names and dosages of their medications because they have been accustomed to taking medicati ons throughout their lives was not supported by the participants responses in the written questionnaire and in the interviews. Only about 30% of the participants could name their medications without looking at their medication bottles or a chart that listed and pic tured all of the currently available antiretroviral medications. Thus, in and of itself naming the medications was not associated with good adherence. Angela, a 17-year old, after consulting the chart and not being able to pick out her medications, finally said that her
99 mother knew the names and left the room to consult her. Most did know how many pills they took each day, though there was some hesitation by a few of the participants as t hey gave their answers. This finding is somewhat surprising, since all of the clinicians who provide care to these adolescents and were interviewed for this study said that, during most vi sits, they asked their patients to name their medications and reviewed the importance of adher ence with them. In fact, some of the adolescents referred to the repetitiveness of t he providers questions about medications. One of the women in the biological mothers focus group raised this issue in expressing her exasperation with the pressures of the c linic visit. 10 Adherence based on recall of missed doses: A = Neve r or less than once a month; B = Misses once a month; C = Misses twice a month; D = Misses 3 or mo re times a month 11 Charts of all antiretroviral medications, with nam es and pictures of pills. Table 4.2 Adolescent Engagement and Adherence Participant Medical Knowledge Adherence Name Age Knows ARV Names VL, CD4, and Resistance Knowledge VL Recall 10 Paula 13 W/Chart 11 VL, CD4 U B Bridget 18 W/Chart VL, CD4 U B Lucy 19 Yes VL, CD4 U A Rachel 16 Yes VL, CD4, R U A Valerie 16 Used List R U A Mark 14 Read Bottles R U A Nina 17 W/Chart VL, CD4 U A Katie 22 Yes VL, CD4, R Good D Vanessa 16 Read Bottles VL, CD4, R Good A Jeff 16 Yes VL, CD4, R Good A Zo 16 W/Chart None Fair D Angela 17 No VL, CD4 Fair A Stephanie 20 W/Chart VL, CD4 Fair D Olivia 13 No None Fair A Diana 19 Yes VL, CD4 Fair C Keith 18 N/A VL, CD4 N/A N/A Sean 20 N/A VL, CD4 N/A N/A
100 While Anita 12 described the visit as overwhelming because it included too many different professional encounters, she also thought it was a waste of time t o ask the adolescents about their medications at each visit: You got the nutritionist, you got the nurse case manager, you got to see the doctor, you got to see him. Its just too many people its so much pressure. Name your pills. You ask them that every time they come. If they dont know the name of those pills by now, come on. The adolescents medication knowledge, the clinicians and patients views of the necessity of reviewing medications at each clinic visit, and a mothers perc eption that adolescents already knew the names of their medications indicate a divergence of opinion among patient, parent, and practitioner on what adolescents know and the instruction and guidance they continue to need. Labs and Viral Resistance Also reviewed during clinic visits were the patients lab results. When aske d about the two main lab tests, the viral load and the CD4 (T cell) count, which indicate viral suppression and immune function, there was general familiarity by al most all of the participants. Three of them got confused by which count was supposed to be high and which should be low for optimum functioning. Only five had some idea of the results of their last tests, but 75% of the participants were aware of and demonstrated s ome understanding of these two measurements. Only two participants were unable to ta lk about them at all. Of particular interest was the ability of the participants to discuss the importance of taking their medicines faithfully every day, and the connection of adherence t o an undetectable viral load and to the risk of viral resistance. Only Katie, who was 22 ye ars 12 The mothers in the focus group have all been given pseudonyms.
101 old at the time of her interview, mentioned the term resistance without prompting, and two participants had a general, if somewhat inaccurate, idea of what resista nce meant when prompted. When asked why it was important to take the antiretrovirals every day as instructed, none of the participants mentioned the threat of resistance, though Mar k and Valerie did say that the medicines would stop working. All of the participants did say that their clinicians reiterated the importance of remembering to ta ke the medicines every day. When I asked them if the doctor or nurse explained why, they could all give an answer, though their responses ranged from it keeps the bad guys away [Zo 16] to an attempt to explain resistance, the medicine will stop working They say that my body wont get immune to not taking them, and then itll stop accepting, it will rejec t them [Vanessa, 16]. When I asked Diana, 19, if she had any idea of what would happen if she didnt take her medicines every day, she replied with a chuckle, Death. She did, however add that taking the medicines every day would get your viral load up and my T cells back up or something like that. This response showed an awareness of the viral load and T cells, though she confused the effect on the viral load, which would be lowered with good medication adherence. Lucy, 19, also was aware of the effect of the medications, saying they keep my viral load high and I think my T cells down. I think thats right. Is that right? Again we see a slight stumble as she attem pts to explain the effect on viral load. Paula, on the other hand, mentioned correctly that taking the medications keeps the viral load down and the T cells up, and Jeff understood the effects as well, with some probing. Rachel was able to explain resistance with some probi ng, and explained it this way, I know theyve told me that my body could start getting us ed
102 to my medication like too used to it and that it will reject my medication again and it will stop working because its been working so well for so long, like that could happen. Two girls, Angela and Olivia, simply mentioned that they would get sick if they di dnt take their medicines every day. Provider Explanations of Medical Concepts The confusion and incomplete explanations with regard to viral load, CD4 (T cell) count, and resistance are somewhat surprising, given the clinicians desc riptions of how they explain these concepts to their patients. Each of the clinicians was asked i f and to what extent they addressed lab tests and viral resistance in their encounters with adolescent patients. All of them said that they review the patients viral loa d and CD4 count, providing more detailed information as the child ages. Two of the nurse practitioners gave interested patients health record cards with the patie nts viral load and CD4 count so that patients could see their progress over time. The explanations of these two measures ranged from a very basic description of target numbers to metaphorical or graphic representations. The detail of each cl inicians explanation was somewhat varied, but generally basic, and seemed to depend on the interest and perceived ability of the patient to understand what these measur es meant. Carol considered it very important for her patients to understand their viral load and CD 4 count, and probed her patients for knowledge on which should ideally be low and which should be high, and then introduced specific numbers. She admitted that sometimes patients would still not be able to tell her their numbers, but she tried to get them t o understand that they want an undetectable viral load and high CD4 count: I kind of go a little bit into, like, Well, tell me what your, what do I want your blood work looking like? because I find that a lot of times its very
103 characteristic of adolescents, if I dont feel sick well I must not be sick, so I try to really get them to buy into their numbers, like their T cells and their viral load so Im trying to make sure they understand, like, you want more than five hundred [T cells] and undetectable [viral load] and kind of make sure that they know where they are in that range of T cells, and then sometimes Ill say, Do you know what yours are?...Because I pretty much go over them every time theyre in. Ill be like, Well, do you think theyre above five hundred or under five hundred? And theyll be like, Oh no, I know theyre above five hundred because you say my labs look good every time, so they kind of, they may not remember that they were 780, but they know that theyre in this really good range. Ann described her discussion of viral load and CD4 count in a similar way, trying to involve the patients in the discussion of their numbers: As they get older I definitely would go over their CD4 and their viral load, teach them about that I explain what it is and definitely thats going to be different levels for different people, for different kids and adolescents, but I pretty much, or sometimes most of mine explain it to me. I also will ask, Now your CD4 what is that again? And I try to have them give it back to me then, cause I can help correct it if its wrong. Or Ill say, Now is it supposed to be high or is it supposed to be low?...So teaching about it, asking questions so that they can tell me what it is, and then going over their numbers. Ill get a little tracker thing for kids or families who are interested. Some are, some arent, some dont want to be carrying that around, some are really interested. When asked if all of her adolescent patients knew what a viral load was, she responde d, They should definitely know what it is. When asked if they knew what a CD4 count was and if they knew what their own CD4 count was, she said, Yeah, and ideally, at t he very least, they should know theirs [viral load] is undetectable and their CD4 is good. That would be great. If they could have a closer like, oh, 500 is their CD4, that would be great. However, when I probed further for whether she thought her adolescent pati ents would know their count, she then replied, I would say, I bet, know for sure the exact number or very close to the exact number, probably 40 to 50%, maybe 40%. Would know like, could say if theyre 560, could say five hundreds, Im going to go with 40%.
104 She did add the caveat that sometimes the patients who are doing extremely we ll, with numbers to reflect good adherence and good health, will not know their numbers, and this was indeed the case among several of the studys adolescents. This is bec ause when theyre doing well they seem less, they dont worry about it, so like I have some who are, theyre just doing great but like if I asked her what her exact number is she would say I know its very good, Im undetectable, but she might not be able to tell me what her number is because at some point I think shes kind of said, well its good and Im not going to worry about that. [Ann] Carol and Ann were not asked specifically if they discussed viral resistanc e with their adolescent patients. However, when Ann was asked whether her patients ever voiced any concerns or fears about taking their medicines, she did not point out any mention by her patients of resistance or the medicines not working. Ed described viral load and resistance together in a boxing metaphor, which he said was very well received and understood by his patients. His description of resi stance is particularly vivid, and was more detailed than the other clinicians explanat ions. He also presented the concept in a way that his patients could relate to, and it bears quoti ng at some length in order to follow the thread to its conclusion, especially his inclusion of the somewhat difficult concept of resistance: In the simplest terms Ill say, Well, what happens when you take your meds? and this is where I get into resistance, because I build all that into the same conversation. You know, Youre taking your meds and if you take them the right way, youre beating the virus down, beating the virus down, beating it down, beating it down, beating it down. When you have the virus way up to here, its doing, it can do a lot of damage in your body, so the goal is to take your meds, beat it down until the virus isnt even hardly thinking so well youre beating it down so good down to such a low level that its really not doing much. Its there, its in your body, if you dont take your meds its going to start growing again and getting really big but youre taking your meds, youre beating it down so its not hurting you. You know, youre just keeping it smashed down as far as you can keep it smashed down. And Ill say undetectable we just say
105 undetectable, that means its less than thirty-eight That means its at such a low level that we just, we dont keep looking for it anymore because we dont really need to know the number, but youve done great, youve gotten it smashed down to such a low level, its really just there, its not doing the damage that it can do and so [I] get them to the point where they can finally do all that and explain it all to me. [B]ut if you are beating it down really good and you kinda stop taking your meds or start skipping doses, youre letting the virus come up a little bit so you want to just keep on beating it down but when you dont do that, say you go hang out for the weekend, you go to a few parties, you dont take your meds, the virus is like ah, its coming up again. So the virus starts coming up again but then you throw the meds on it again, you beat it down with the meds and the virus is like, oh shit, you know hes giving me the meds again. So then when it comes up again, when you stop taking your meds because youre partying for a weekend or you forget your meds the virus is like, okay, I know you just want to hit me with those meds again, so before he hits me with those meds Im gonna change myself so when he hits me with those meds those meds arent gonna work anymore, you know and then Ill say to people thats what resistance is. Its when youre not beating the meds down much anymore and youve given the virus the opportunity to think because when youre beating it down every single day, youre not missing any meds, the virus cant even think, but when you give the virus a chance to think, because its smart, its going to mutate and change itself so the meds dont work. [Emphasis added to specific excerpts on resistance] Both physicians said that they discussed the viral load and CD4 count with their patients at each visit. They also said that they explained the concept of resist ance. Dr. Flynn said, I show them whats happening, try to explain in a simple way, like what resistance is, how does it develop and why its bad for them to have a resistant virus. So we try to explain in simple terms of why does it happen, and yeah, we discuss about resistance. We dont go into the details, like the mutations or the numbers, but just what happens if the virus becomes resistant and what are the problems from that. Dr. Lane said she discussed resistance with her patients in particular when a medication change was demanded (presumably because of resistance to one or more drugs in the ol d regimen) or there were problems with adherence. She went into greater detai l in her
106 explanation, used imagery to present the concept of resistance to her patients, a nd sometimes showed them the resistance test results. She likened the virus and the medicine to geometric shapes that must be alike in order for the medicine to work a gainst the virus: What I try to do, you know, sometimes I kind of draw a picture of why a virus changed from a triangle, lets say, in the surface to like a square in the surface, so the medication that was targeting the triangle doesnt work and now we have to switch to this square [O]r I show them the resistant test and because its very graphic I think that for some patients its kind of an open eye of why, you know, Im having issues, because when you see [it] they give you different arrows and bars and stuff, but then on the right side usually has an interpretation sensitive, resistant or partial susceptibility, and the resistance is kind of highlighted so when you see your page, and you see that you are really not sensitive to most of the medications, I think that kind of puts the emphasis, yes, this is bad, you know, Ive really blown most of my possibility for treatment. Dr. Lane also said that she explains the level of adherence that is necessary for the medicines to continue to work and for the virus not to become resistant to them. Despite all of the clinical details that the clinicians said they reviewe d with their patients, including certain details at every visit, the clinicians interview s nonetheless indicated that many adolescent patients do not have a committed interest in their cl inical indicators and outcome measures, nor have they made the connection between these measures and their present and future health status. The clinicians also mentione d that there may be other priorities in a patients life, issues that dwarf the im portance even of their HIV, and prevent them from taking a keen interest in their health care. S everal remarks illustrate this incomplete understanding: It [a rising viral load] seems to make a difference maybe for a few patients, but for others, its just like a number and a piece of paper and they always go back to that argument, Im still feeling okay, I dont feel bad, so maybe its not so bad having a viral load, that the number looks very pretty on paper and youre [the doctor] really happy about it, but for
107 me [the patient], it really doesnt make a difference. I mean having a litt le viral load or having 50,000, Im feeling the same way so why take it? Why bother. [Dr. Flynn] Sometimes you want to make them remember that a undetectable viral load doesnt mean that the virus went away, but its just that we really suppressed the virus so we can [no] longer detect it by the regular, you know, routine methods in the lab. Sometimes that kind of, you know, they say, well maybe it actually went away. [Dr. Lane] There definitely is an issue of the ones who are deteriorating, whove never really felt bad anyway, and probably havent taken their meds much, like you know, theyre not very adherent, but fortunately for a long time theyve done really well. Im sitting here telling you your T cells a re going down, okay theyre going down, this is a problem, youre below 200, and they dont feel a difference between when they were 600 or 500 or when theyre 150, no difference. And they didnt take their meds when they were 500 and they are not going to take them when theyre 150. [Ann] Summary of Adolescent Medical Knowledge In summary, despite the providers emphasis on the medical aspects of HIV during the adolescents clinic visits, most of the participants in this study did not display a detailed understanding of these concepts. During the discussion of why it was important to take their medicines every day, thirteen of the seventeen participa nts mentioned the terms T cells and viral load, and generally knew that the form er should be high and the latter low. Two adolescents mentioned that if they did not take their medicines, they would stop working, and two simply said that they would get sick. In addition to the two adolescents who said that the medicines would stop working if they were not adherent, three participants had a good or fair understanding of viral res istance. Thus, the association between active participation in ones care and treatment and good adherence (as measured by viral load tests) was generally a positive on e, where those more actively engaged had excellent or good adherence. However, it is worth noting t hat
108 that none of the participants displayed a confident knowledge of the medical aspects of HIV and the implications of adherence for future health outcomes and HIV transmissibility. Adolescent Responsibility The responsibility for taking antiretroviral medicines every day has b een fully assumed by about half of the fifteen participants currently taking them, meani ng that they do not depend on anyone to give them their medications or remind them to take them. All but one of these youth had undetectable or nearly undetectable viral loads, which strongly suggests very good adherence. Valerie, Jeff, and Diana, on the contra ry, took their medicines with significant participation of the biological parent. Val erie lives with her biological mother, and together they regularly organize their pills. Valer ie, however, is responsible for taking them, and said that she needs to be reminded only once in a while. The fact that Valeries mother also takes antiretrovirals, appea rs to be diligent in taking her own medications, and is involved in her daughters life, seems to be a factor in Valeries success at adherence. Jeffs father sets out the pills for his s on, and watches him take them, and this level of involvement again seems to ensure good adherence. Of all the participants who either have full responsibility or full involvement by a pa rent, only Diana, whose mother also sets out her pills, did not have perfect or very good adherence. Her situation and her mothers attitudes toward biomedical health car e and antiretroviral therapy will be discussed further in the section on provider-pati ent relationships. The young people who had problems with adherence were those for whom the locus of responsibility was less clear or those who were ambivalent about taking t heir
109 medicines. Olivia needed constant reminding and Angela said that her mother would remind me if I like forget, like if I walk out of the house, shell be like, did you tak e your medicine. Ill be like, oh yeah. Zo, Diana, and Angela mentioned that t hey had in the past stopped taking their medicines. Zo said she was going through somethi ng at the time. So I just stopped. Angela said she stopped when she learned that her fathe r had died (from AIDS) and felt depressed. Diana stopped only for several days, say ing that she just didnt feel like taking them. While all three resumed taking their medicines, emotional difficulties or indifference may still have an effec t on their current, less than optimum, adherence. Timing of Responsibility The assumption of responsibility may also have been premature or overdue. Zo, 16, has had full responsibility for her medications since she was thirteen, when her mother gave me a choice to take it and not take it, so she dont remind me no more. Its just me, its all on me. However, her motivation for resuming her medicat ions, after her decision to stop for a month, was not directed at her own health, but rather just to keep my mom happy, and keep her from stressing Just to make life easier for her. Full responsibility for taking her medicines appears to be difficult for Zo. Diana is nineteen, and has not yet taken full responsibility for her medicati ons: Im not sure about the dosage, cause my mom, she does it for me. She said that she wanted to perform this task herself, but I try to tell her, let me do it myself, but s he wants to do it But I cant learn if she doesnt let me do it. It was conjectured that among adolescents living with their biological mothe rs, the disease management style and adherence behavior of the mothers might have an
110 impact on how the children assume responsibility for their own care and treatment. F rom the mothers in the focus group, there did not appear to be a relationship between a mothers adherence and her childs. Teresa, Joyce, and Nancy all spoke about the difficulties they had taking their own medications, whether because of side eff ects or forgetfulness, yet their children all had undetectable viral loads. Nancy wa s not vigilant about her own adherence, but she was about her daughters. Anita confessed to being tired occasionally and not taking a dose, but overall, she was adherent and apprecia ted the importance of good adherence. However, she had two children, one of whom had perfect adherence and the other only fair adherence. What seems to be more vital is the mothers attitude toward antiretroviral t herapy and her involvement in the childs treatment and adherence. Donna was not convinced of the safety and necessity of the antiretroviral medications, and her daughter displayed laxity in her own adherence. Teresa was ambivalent about her own adherence, but s aid that her six-year-old son is accustomed to taking his medicine and understands tha t its his duty to take his medicine morning and night. However, one wonders how she will monitor her sons adherence as he gets older, because she also insisted that you cant force somebody to take medicine. I dont care how old they are. These examples, as well as comments from the clinicians, point to the difficul ties that both caregivers and clinicians have in determining the amount of responsibility that an adolescent can handle and amount of involvement that they should have in their childrens disease management. They find themselves trying to shelter these adolescents from the challenges of HIV, but at the same time, expecting or demanding that they assume responsibility for their medications. Among the clinicians, Ed, who sees older
111 adolescents, believed strongly that these young people would be more responsible for managing their disease if they were treated more like adults than like childr en by the health care providers. He emphasized his role in helping the patients to develop power and control in their disease management. He described the success he had with one patient: He was a young man who was developing a disease identity, felt pretty hopeless, helpless because thats what happens with kids with chronic disease, they grow up feeling like this, you know, that theyre, you know, dependent upon the health care system, their providers and everything. Their parents are worriers so they kind of overprotect and not let them kind of start developing but this one particular patient I was working with, when I first got him he had zero T cells and in a year and a half I just got three hundred and something T cells on him but for him it was changing the pediatric focus. He needed an adult focus; the pediatric providers, he wouldnt even come for their appointments because they couldnt shift from talking to him like a baby or a child or lecturing him like a parent would as opposed to giving him some adult skills, working some adult skills in, saying its up to you, dude, you know, and then he flew with that. Both Ann and Dr. Flynn, however, cautioned that sometimes parents prematurely think that their adolescent children should be responsible for their medications, but the childre n are not yet ready to take on this responsibility without some continued guidance from the caregiver: what I find is sometimes, you know, the parents are like, theyre fifteen, theyre an adult, they need to know how to do that and Im like, I understand, theyre working to be an adult but as much as we want them to be able to do that, theyre still learning, so then I do try to get the parent involved in still supervising it. [Ann] parents try to give away some of that responsibility and they [adolescents] come to the clinic and theyve always been undetectable and all of a sudden we see a big spike in the viral load and like, whats changed? Well I try to give up the responsibility and we say like, theyre not ready. Youre going to have to go back and watch every single dose; obviously theyre not doing what theyre supposed to be doing. [Dr. Flynn]
112 Some of the adolescents accepted the responsibility with aplomb. Thirteen-yea rold Paula acknowledged that it was her responsibility to take her medicines, sayi ng, its not really his [fathers] job to remind me, so if he doesnt remind me, I remember myself. Lucy, 19, nicknamed her medications my three special friends and recognized their importance in keeping her alive and healthy when she describe d how she felt on the rare occasion that she forgot to take her pills, I got scared cause I thought something was going to happen That my count would go down really low. And fast. Lucy was the only participant who expressed this kind of concern about being adherent. Olivias case was complicated by the fact that her health care providers had decided that her medications were no longer effective. It is difficult at this point to know whether she was non-adherent or whether the virus had become resistant to the medications, though resistance itself could indicate prior non-adherence. Since her doctors had decided soon after her interview to change her regimen, it is probable tha t resistance was causing the lack of viral suppression. Nonetheless, during her i nterview, Olivia, 13, displayed little motivation toward managing her illness. Her adopt ive mother, who joined the interview for the last several minutes, made it clear that Olivia needed constant reminding to take her medicines, and remembered on her own only when she wanted to demonstrate her sense of responsibility in exchange for getting something she wanted from her mother. Her mother also insinuated that Olivia was not at ease with the virus as part of her life. Her mothers words are revealing and helpful, since Olivia was not very forthcoming during her interview. In addition to mentioning Olivias needin g to be reminded to take her medicines, her mother also revealed that Olivia felt l ike she was the only child with HIV:
113 Why should I remind her when she knows she got to take her medicine? All the time. Not sometimes, all the time She takes it every day, twice a day, but its like, I shouldnt have to remind her, she knows she got to take her medicine. Its like, she dont want to take it. If I dont say nothing, then its be done. She wont [But] [i]f its something she want, if she wants to go somewhere or whatever, then shell bring the medicine. Like last night, you brought the medicine, right? Because she want to get her hair fixed today I tell her, shes not the only one. Its people out there thats sick and she feels that shes the only one and shes not. Its kids younger than her has it, but she just dont know who they is I think...that she should like have, meet other people, let her know that shes not the only child of the age of thirteen, theres other kids, younger than her and older than her that has it, but theyre not going to come out and say it, you know, open that thats what they have. Because they dont want anyone picking on them. But youre not the only one, thats what I keep letting her know. Barriers to Responsibility The clinicians mentioned additional barriers that hinder the adolescents tak ing responsibility for adherence. Though they were not the focus of this study, it is important to note that psychosocial issues, substance use, and the physical side effects of the medications were mentioned as factors that could interfere with adherence a mong adolescents. For the perinatally infected adolescents, the sense of unfairness is a theme that clinicians hear in their practices. Even when they are healthy, the pati ents are reminded of their disease on a daily basis when they have to stop and take their medic ine, and this can lead to rebellion and depression. Ann acknowledged the frustration of the psychosocial issues, because its the hardest stuff to fix. She also allude d to the complex lived experience of the adolescents and its effects on when and why they dec ide to become adherent: And Ill tell you I have some who, they never take [their medicines] for years and like one day it clicks and they do it, and I can tell you, I mean it wasnt anything, I mean Ive been doing the same thing for five years so it wasnt something I did. It was something, somehow,
114 between them and their life, and maybe something, somewhere, I maybe taught them along the way and it maybe clicked. Ed focused more on the psychological issues that are a part of adolescence, including identity development and a period of rebellion. He believed that many adolescents, particularly the perinatally infected, wanted to separate themselves from the disease, separate from the meds. When asked at what age he saw this behavi or, he said it was around the age of sixteen, but usually by late adolescence I can kind of get them over that hump. All of the clinicians agreed that mental health is a serious issue that nee ds to be addressed among the perinatal adolescent population. Asked to give a rough percentage of the adolescents that they think were currently in need of some mental health at tention, they reached the same conclusion that half could use some help. Carol first cited 30 to 35% who have been diagnosed with a mental health issue, but then added that another 15% may be in need but not yet diagnosed. Dr. Flynn was at the high end, estimating that 60-70% of the adolescents had mental health needs requiring attention. Carol believed there was a a huge need for more, kind of, high quality support groups and mental health [that] their mental health needs are far bigger than their issues related to HIV. Problematic substance use was less prevalent, according to the clinicians, wi th most putting the level at around 10%, though Ann thought it might be around 20%. Dr. Lane added that of the older adolescents, she thought perhaps about 30% had tried drugs or alcohol. She added that in addressing adherence issues, I dont like to generalize, but I would say that a greater part of the patients that may have an issue with compliance, do have some substance abuse going on, even if theyre not necessarily, you know, getting in trouble with
115 it, you know with the police or stuff like that, but its kind of a common practice and in percentage I would say I mean 30% at the minimum. Summary of Adolescent Responsibility In sum, taking responsibility for their health care and treatment meant good adherence for most of the adolescents, but only if the individual had the tools with which to be successful. One of these tools was comprehension of HIV and lab tests, as wel l as an appreciation of the importance of taking the medications every day. However, for some adolescents, active participation in their treatment may need to be tempe red by active monitoring by the caregiver, and gradually increased as the adolesce nt matures. For others, mental health care and substance abuse counseling need to be provided. Non-Adherence, Treatment Fatigue, and Treatment Interruption Keith, 18, and Sean, 20, were two unusual cases among the study participants. They had stopped taking antiretroviral medications at the instruction of their he alth care providers, because they were not adherent to their medications. Seans explanat ion was inaccurate: I was doing good and they wanted to see if I could keep doing good off, s o they just gave me the chance to stop and they said I was doing good without it. Keit h complained to his health care provider that the medicines make me feel like I m going to throw up all the time, and they take away my energy. They make me weary, I ha d to lay, sleep all day, go to sleep so I could wake up and feel better. Since inadequate a dherence can lead to viral resistance, the health care provider decided, in both of these case s, to interrupt antiretroviral therapy in order to avoid viral resistance and, therefor e, safeguard their future medication options. When the clinicians who were interviewed for this stud y were asked whether they would ever stop antiretroviral therapy if a patie nt was doing well, they said they would rarely consider doing so, and pointed out that guidelines do
116 not recommend discontinuing treatment. They added that, during treatment interrupt ion, there is increased morbidity and mortality, as well as progressive immune deterioration. One of the providers said that one might consider discontinuing tre atment if a patient was clearly non-adherent but had relatively stable CD4 counts and l ow viral load. Keiths medications were stopped in January 2009. He was experiencing difficulties with his current regimen, and discussed this with his provider. He expl ained that he was directed to take his pills until his viral load reached very low levels, at which point the clinician stopped the medications and monitored his levels. However, from the available records of his viral load, it is not possible to ascertain viral suppressi on in January 2009. As of April 2008, Sean was not taking his medications and his medical chart indicated that he was not prescribed further treatment at that time due to his nonadherence. As the graphs below indicate, their viral loads, though not suppressed, were somewhat steady at relatively low levels. Their CD4 percentages were at the low end of normal or below normal, the normal range being from about 30% to 60%. Thus, they were maintaining a relatively healthy status without their antiretr oviral therapy, though Sean had been out care for about a year at the time of his interview, so it is unknown how his viral load and CD4 count had changed since his last medical visit in 2009. Keith, however, continues to show relatively low viremia without his medicines. Studies on planned treatment interruption (PTI) demonstrate a rise in viral loa d in the weeks after PTI began and subsequent viremia stabilization, along with rapid decreases in the CD4 count and percentage and subsequent stabilization (Noguera et al.
117 2010; Castro et al. 2010). Thus, Keith and Sean appeared to be somewhat stabilized during their PTI, as of their most recent lab tests. Keith4682 4038 3446 8119 1206 2225 17753 349970 2500 5000 7500 10000 12500 15000 17500 20000 22500 25000 27500 30000 32500 35000 37500Feb-08 May-08 Aug-08 Nov-08 Feb-09 May-09 Aug-09 Nov-09 Feb-10 May-10 Aug-10 Nov-10 Viral Load Figure 4.1 Keiths Viral Load, 2008-2010 Keith610 530 595 597 657 484 21 20 21 200 100 200 300 400 500 600 700Mar-08 Jun-08 Sep-08 Dec-08 Mar-09 Jun-09 Sep-09 Dec-09 Mar-10 Jun-10CD4 Count10 15 20 25 30 35 40CD4 Percent CD4 Count CD4 Percent Figure 4.2 Keiths CD4 Count and Percentage, 2008-2010 Sean7805 4639 39720 2000 4000 6000 8000 100003/1/20085/1/20087/1/20089/1/2008 11/1/2008 1/1/20093/1/20095/1/20097/1/20099/1/2009 Viral Load Figure 4.3 Seans Viral Load, 2008-2009
118 Sean735 513 633 540 38 32 250 200 400 600 8002/1/20084/1/20086/1/20088/1/2008 10/1/200812/1/2008 2/1/20094/1/20096/1/20098/1/2009CD4 Count15 25 35 45 55CD4 Percent CD4 Count CD4 Percent Figure 4.4 Seans CD4 Count and Percentage, 2008-2009 These two adolescents, Keith and Sean, evoke the issue of treatment fatigue. Keith was especially frustrated with his regimen and its effects on his wel lbeing. The lives of these adolescents have been defined by their medical experiences, es pecially frequent clinic appointments and daily medications. Parents, as we have seen, may be able to obviate this fatigue by continued involvement in and support of their childrens adherence. However, clinicians play an important role, too, through their medical instruction, facilitation of a sense of responsibility in their patients, and thei r help in resolving some of the problems (e.g., side effects, pill burden) that may lead to t reatment fatigue. The clinicians who were interviewed for this study had very different att itudes toward the issue of patient responsibility and continued adherence. Carol, taking the more pediatric focus, saw her role and message directed at the caregivers : the role of the caregiver at home is ultimately what makes you or breaks you .I think you have to kind of empower them [parents] and say, your message to them is that not taking them [the medicines] is not an option Its like, do you want to take them with dinner or after dinner or with apple juice or milk? There are certain things and absolutely, there can be lots of choices that are reasonable, but not taking them is not an option, and I think some of our caregivers, they get that, like you dont have to have that conversation and its just clear and thats probably how they
119 parent .I just think that message [is] that not taking them is not an option [Emphasis added] Ed also spoke to treatment fatigue and observed that, because of it, the perinatally infected were not as adherent as the behaviorally infected adolescents. He not ed that rebellion tends to occur when adolescents reach about sixteen and are given or must take responsibility for their medications. In addition, he referred to the adolescent s identity development at this time, and the danger for an adolescent to develop a disease-ba sed identity because that can lead to dependent personality issues and a lot of helples sness. For this reason, Ed took a totally different approach, and since he sees older adolesce nts, he directed his actions and message to the adolescents: Im happier when they rebel a little bit than not rebel a little bit because when they rebel a little bit and stop taking medications for a while, Ill even give them a break sometimes, because at that point in their develop-ment theyre saying, you know, I know Ive had HIV, Ive had it for my whole life, I dont want it to be part of my self-identity .I kind of expect that the adherence is going to be an issue with, not all kids. Some kids just continue on and take them, a lot of them in the teen years stop taking them and I think it creates a lot of anxiety in some providers when they do that, and if theyre not particularly doing well it creates a little bit of anxi ety in me too, if theyre not doing well, but I know that once they get through some of these milestones, you know, more than likely theyre going to start taking the medications again and Ive actually seen that with a few of the patients here. You know, I think thats a very common issue, you know. Dr. Flynn also brought up the realization by some adolescents of the lifelong nature of medications, which could lead to fatigue and the thought, I want to see what happens if I dont take it. The problem with this treatment rejection is that some times the patients continue to feel well or to feel better, and it is then incumbent on the physician to explain that yeah, youre gonna in the future, in the long term, its gonna hurt you more than the short term benefit, if theres any to it.
120 The concern with the adolescents decision to stop treatment or the physicians prescription of treatment interruption is that the adolescents viral load may r ise to levels that make him or her more infectious to sexual partners. This is discussed in Chapter 5. Summary of Adolescent Engagement The active participation of these adolescents in their health care and treat ment was measured by their knowledge of medication names and dosages, lab tests and results, and viral resistance. What the interviews reveal to be even more important in terms of successful adherence is an internalized appreciation for what taking these me dicines means. All of the participants admitted that the disruptions of daily living sometimes interfered with their medication schedules. What differentiates those wi th successful adherence from those who have problems is that the successful adolescents knew that they had to take the medicines regardless of the distractions, and found a way to do so. Whereas Vanessa, 16, took her pills everywhere and went into the bathroom to take them privately, Stephanie, 20, did not take her pills when she went to a friends house. Olivia, 13, had to be reminded constantly to take her pills, whereas Paula, also 13, said it was her responsibility, not her fathers, to remember to take her pills. Whereas Nina, 17, discussed her stomachaches and sleeping problems with her nurse practitioner, Kei th, 18, stopped taking his medicines. Overall, if the adolescents were actively involved and interested took full responsibility, understood and accepted the importance of medication adherence and had good support, they had better adherence. They are the ones who accepted the responsibility for managing their disease more completely, remembere d to take their medicines, understood the importance of taking them, and were engaged in and
121 knowledgeable about their health care. The participants for whom responsibility was not accompanied by understanding and appreciation for what adherence meant had more trouble adhering to their medications. Provider-Patient Relationship The relationship between the adolescents and their health care providers had a weaker impact on how well these young people adhered to their medication regime ns. Overall, the participants reported a good and trusting relationship with their heal th care team, and generally thought that their clinicians understood their particul ar issues regarding HIV medicines and adherence. Yet, among the adolescents who had a good relationship with their providers, some were considerably more successful at adhe rence than others were. Table 4.3 shows the participants ratings of their health care p roviders understanding of their personal experience with medications in response to the ques tion: On a scale of 1 to 10, how well does your doctor or nurse understand your issues, challenges, problems, and experience with taking HIV medications? Table 4.3 Adolescent Rating of Providers Understanding The two teens who did not give a high rating to their providers understanding of their medication issues, Zo and Diana, are the participants who were less s uccessful at medication adherence than the others. In her interview, Zo expressed disinterest in her 1 2 3 4 5 6 7 8 9 10 /___/___/___/___/___/___/___/___/___/ 1Doesnt understand at all----10 Underst ands everything Paula 9 Bridget 10 Diana 5 Lucy 9 Katie 10 Zo 4 Rachel 8 Jeff 8 Olivia 10 Valerie 8 Vanessa 7 Keith 10 Nina 6 Angela 8 Sean 10 Mark 8 Stephanie 10
122 medical care, and in answer to a question about her lab results, she said, its kind of confusing, so I just let my mom deal with it . She also expressed annoyance with the repetitiveness of the clinicians information and admonitions, saying, she [ the clinician] come in like every time I visit, its just complain about whats happening to me. And s he goes on and on for like ever I know the stuff she telling me and she just go on and on. The repetitiveness of the providers questions and explanations was also mentioned b y Vanessa, Lucy, and Paula, though this did not interfere with their commitment to adherence. Bridget explained her take on this when she said, like when youre young, they ask you, theyll like constantly remind you that you have HIV, but as you like get older, like when you start to become more independent, theyll start talking to you about protection and birth control and everything. Cause they just put me on birth control So itll change, once you get older. Adherence counseling and discussion about medication regimens and problems are part of the clinical visit protocol, and the clinicians bring up adherence, lab res ults, and medications at most every visit in order to advance the knowledge of the patient according to his or her age and level of understanding. From the perspective of some of the adolescents, the process is not seen as educative, but redundant. This results in irritation and, sometimes, disinterestedness. Vanessa and Lucy, for example knew the terms viral load and CD4 or T cell count, but were unable to state their latest number s. This may reflect a lack of attention to what happens each time they visit the cli nic. Dianas situation is complicated by the fact that her biological mother, with whom she lives, voiced ambivalent feelings about taking antiretroviral medication. D iana said that she is taking her antiretroviral medicines as well as alternative he rbal medicines. She had changed health care providers recently, having seen her current doctor only twic e.
123 She does not appear to have established a rapport with her doctor; when asked whether she talked to the doctor and asked the doctor questions, she replied, Nope I just listen. While Diana knew the names of her medicines and had a basic understanding of her lab tests, she seemed to be less engaged with her health care than some of the other participants who displayed a similar knowledge. Her mothers attitudes towa rd the health care she and her daughter received, and toward the antiretroviral medications, a re likely to have exerted an influence on Dianas commitment to her own health care. Dianas mother was a participant in the biological mothers focus group, and her input will be discussed further in the section on family influences. The influence of the biological mother on a childs disease management is one of many aspects of a childs environment that shape the childs approach to his or her H IV disease. Some of the mothers in the focus group voiced dissatisfaction with the st ructure of the clinic visit (discussed below) and said that their children did not like going t o their clinic appointments. It is noteworthy, though, that mothers who voiced dissatisfaction with certain aspects of their childrens health care had children who wer e extremely diligent with their medication regimens as well as children who were less e ngaged. The mothers attitude toward her childs health care seemed to affect the childs attitude toward the clinic visit, but did not directly affect the childs adherence. The availability of different staff and services at the clinic, which some regarded as excessive, raises the issue of perinatal adolescents care fatigue and their changing needs. The clinicians mentioned that many of their patients needs could be address ed at the clinic, a convenience and advantage for many who otherwise would not have access to these services. However, the adolescents themselves, as well as some par ents, referred
124 to the structure and content of a typical clinic visit as overwhelming, and this af fected their satisfaction with the services and their willingness to keep their appoint ments. One of the nurse practitioners brought up this problem in his interview: I think that has shown up on our patient surveys too, where they say, no, they dont like coming here, because they spend one, two, some patients are here three hours. By the time the provider is done obsessing, by the time theyre shoved in to see the nutritionist and then theyre shoved in to see a nurse and then the social worker comes in, thats, I think, that is cruel and brutal to do to some patients, to have them here for that long. [Ed] Even though some patients think that the services are excessive, their dependenc e on the comprehensive attention to their needs becomes evident when they transition to adult care services. Many of them are not prepared to take the initiative that i s required of adults if they want to have all of their needs met and questions answered. Four of the five clinicians underscored the problem and their role in it: a negative to that, though, is its kind of like culture shock when they go to adult care, because theres not a half an hour long visit and you know, my patients just call me directly I think theres a huge need for them to really gain the skills that theyre going to need in adult care, because, I mean, they dont know anything different than our little world and its going to be a little bit of a shocker And we normally just let people reschedule, we dont ever turn people away. I think in adult care theyre like, you no-show three times and youre done. We couldnt do that because theres nowhere else for them to go. [Carol] By the time they see me theyre getting quite a bit older, so they need to transition to adult care soon Its kind of typical in this program, its an acute problem. The youth dont transition well to adult care. When they get to adult care they have no skills to transition. They dont even know how to make their own appointments usually, so I spend a lot of time in preparedness with them to get them ready to move into adult care, which I think, it takes a while for a pediatric provider to shift gears I kind of want to get the kids used to what its going to be like when they get to adult care. Its not going to be coming to clinic and sitting in clinic and, you know, the provider taking an hour with them. Thats just not gonna happen in adult care so I get them used to choosing two or so complaints and not a full list of issues that Ive already talked to them
125 before about and kind of worked to empower them to take care of some of these things on their own. [Ed] We over-shelter and protect our perinatal patients a lot like here if they miss an appointment we call them, hey whats going on, whats happening? Or if they show up late we still see them and were kind of more flexible and nurturing, but then once they move into the real world a lot of things are not gonna be there [S]ome others have become too attached to the program and they go to the adult care clinics and they dont like them and they dont want to go back there. They want to stay with us, which is impossible, so yeah it creates an issue. [Dr. Flynn] Usually we call, we send letters, we are very persistent with our younger patients, but theyre [adult care providers] not going to call more than two times [S]ometimes in pediatrics, we kind of are more like the mother and father of the patient, and then they are not going to have this in other settings. [Dr. Lane] The clinicians responses about the trust and understanding they had with their patients were generally comparable to the adolescents assessment of cl inicians understanding of their adherence challenges. The questions were different, but the answers of both groups acknowledge that the providers understood at least some of the adolescents experiences. However, the clinicians attributed some of this t rust and understanding to the adequate length and the comprehensiveness of the clinic visits aspects that some adolescents, as well as some of the mothers in the focus group, di d not consider a positive aspect of their health care. In addition, while some adolesce nts found the clinicians to be repetitive, the clinicians considered it necessary, and we re glad that they had the time to explain, review, discuss, and ask and answer questions, and could instruct their patients about medications and lab results at every visit, if nece ssary. The latitude that the clinicians enjoyed in their clinic visits means that t heir acquaintance and their medical encounters with the patients were comprehensi ve. They indicated that many of their adolescent patients became very comfortable in di scussing
126 their lives and their experiences with them. In this way, the clinicians had grea ter opportunity to look beyond patients charts and attempt to see and understand the non-medical circumstances that can impinge upon individuals ability, willingness and means to undertake the necessary actions to manage and maintain their health. As Ed, one of the nurse practitioners pointed out, for an adolescent, most of the issues are non-medica l. This level of interaction and knowledge allowed for a far more in-depth encounter t han patients normally have at adult clinics. Because the perinatally infected pa tients had generally been going to the clinic for years, the clinicians believed that they had a good rapport with patients and knew their patients intimately. However, the clinicians had different views on how understanding they could be and how trusting their patients were toward them. They also had very different interaction styles. Regarding trust, understanding, and communication, one of the doctors, Dr. Flynn, rated his level of understanding of patients experiences and challenges a seven (on a scale of one to ten, ten being a high level of understanding). Carol, a nurse practitioners said, They trust us a lot. I mean, I think Im normally fairly aware if it perta ins to, I guess, the part of their life which would affect their medical care, which is a lot of it. So yeah, I mean I think most of our patients are very open, and again we have more time I can tell you where they work, where they live, their last partners name, whether they use a condom, you know, fifty, eighty, a hundred percent. I mean, I think we get to know them pretty intimately. Another nurse practitioner, Ed, answered, I think Im able to form a really good relationship with my patients. I would, Id put me on a nine. On the other hand, the third nurse practitioner, Ann, described the level of trust among her patients as the standard deviation curve and rated her level of understanding of patients a five. She a lso
127 acknowledged, You know, I understand some of it but you know, Ive never walked in their shoes. I dont really understand. Maybe I know a little, yeah. The stark contrast in interaction styles among the practitioners was appa rent in two responses, one by a nurse practitioner and the other by a physician. The nurse practitioner, Ed, tried to shed some of the adult role in order to relate to the patients adolescent experience. He put it this way: You know, Im funkier, I use humor a tremendous amount in my healthcare approach to things, you know. So yeah, I think Im pretty well trusted. The older they get the more they trust me, I think. He also indicated his attempt to treat the adolescents more like adults: What I do for you is this much, what you do for you is this much. You can come in, you can see me, we can shoot the shit, we can bullshit, but if you dont do what you need to do to be healthy, you know, then thats [referring to viral resistance] gonna happen to you, because I can do this much. Everythings up to you and in your control now. Adolescents love that, you know, because thats part of adolescence, thats where they want to move into. They want to be adults, they want to have power over their lives. Later, he added: sometimes Im provider, sometimes Im life coach, sometimes Im perceived as almost a big brother, sometimes I get perceived, particularly from the kids who are looking for that, I almost get perceived as a parent sometimes. The physician, Dr. Lane, took what appeared to be a more no-nonsense approach, emphasizing her role as the medical provider, who had to make the best possible decisions for her patients, while admitting that she could not understand her patients experiences completely: we try to understand, I try to be open, but unless you live the situations, I dont think that you can really understand . I hope I am in the higher end [of the rating scale] so that my patients believe that I am caring and
128 understanding their problems I think that, you know, there are some patients that may be reluctant or some patients that really kind of connect more with their peers or someone from like a group or social worker As a medical provider, you want to be able to understand your patient but you also, youre not necessarily the friend so sometimes, and thats what we try to build in our clinic is that there are these different layers [of services ] so you know, I cannot be your friend because I want to be, I want to understand what happens to you, but I also want to make the best decision [be] impartial in what Im actually going to do or going to tell you or make the best medical decision. You know, if you are emotional all the time involving the situation of the patient, sometimes that may not be of benefit to them. So you need to set up boundaries of where you are and how you provide help. But Ill say that the majority of the patients, because they have been coming for the longest time and I think that they do have a good rapport with the majority of the staff. Perhaps not surprisingly, the adolescents and clinicians had somewhat diffe rent perceptions of the level of trust and understanding in the patient-provider relations hip, as well as different descriptions of and opinions about the comprehensiveness of the healt h care visit. The comments of the adolescents and the clinicians show that there i s a conflict between, on the one hand, providing comprehensive services that patients need and addressing all of their issues as they arise, and on the other hand, treating the adolescents as responsible individuals, expecting them to understand and integrate medical information into their lives, and addressing them in a way that the adolesce nts receive as respectful of their age and maturity. Summary of Findings for Hypothesis 1 Disease management requires a level of knowledge and acceptance as chil dren enter adolescence and are expected to participate more in their HIV care and treatment. Whether or not their caregivers still had more responsibility for their chil drens adherence, the successful adolescents were those who had accepted that they ha d to take these medicines every day. If this acceptance was combined with knowledge of the
129 medical aspects of HIV and adherence, then they might be more likely to prac tice successful adherence. Those who were more ambivalent or who did not accept the responsibility for daily medication were less successful. The provider-patient relationship among these adolescents and these clinicians was generally good, and the effect of this relationship on adherence was mixe d. However, those who were less engaged with their providers were indeed the participa nts who had more problems being steadily adherent. Family Dynamics and Peer Relationships (Hypothesis 2) Family interactions and peer relationships provide the key backdrops for the adolescents daily experience of HIV disease management. For the parti cipants in this study, the activity of taking medications is, or is not, performed in the presence of f amily or friends. Thus, my second hypothesis was: The lack of family stability (e.g., loss of parents or siblings to HIV) and peer support adversely influences adolescents adherence Family Dynamics and Involvement Support and Openness: Valerie, Jeff, Katie, and Mark Greater family involvement, openness, and support led to greater success at adherence. Family structure and stability, however, did not correlate with the participants success at adherence. Among those with excellent adherence and consistently undetectable viral loads, as well as among those who were strugglin g with their adherence, were adolescents who were in a stable household. In addition, fiftee n of the adolescents, both adherent and less so, had lost one or both parents, never known one or both parents, or had been taken from a mother who had substance abuse problems. More than the stability and structure of the household, it appears that the caregiver s
130 involvement and openness about HIV led these families, and the adolescents themselves, to adapt to HIV in their lives and to incorporate the demands of the disease into their daily routines. The clinicians also agreed that families who had adjusted emotionally to HIV and had made HIV disease management a part of the familys routine had adolescent s who were more adherent to their medications. Anns perception was that our kids that were born with it who do well are generally, generally have been in a family where they talk about it, its part of what you do, you just take the meds whether you feel bad or good and so theyve always felt good and they take their meds .I have some who live in very caring homes but the issues around the HIV are still very difficult for them. So theyre safe, theyre loved, but the family, theres still a lot of feelings about the HIV, whether its mom or dad also has it or, you know, that they have trouble dealing with it and maybe mom hasnt always been great at taking her meds and she has trouble telling her child to or theres just general chaos. I have some who, there are very loving, safe, great homes [b]ut the environment around their HIV is still not great as far as, like, taking care of that. Dr. Flynn admitted that there is no magic solution to adherence for all adolesce nts, but he did note that patients who were successful at adherence were those who told me its to make it a routine like when I go brush my teeth thats where I do it or when I have dinner. Its when theyve been able to incorporate it as part of a routine in daily life. Or I think its the most successful thing is like when they are able to incorporate it that they dont have to think too much about it, when it becomes kind of an automatic thing. Dr. Lane also pointed to routine and openness as characterizing the environment most conducive to successful adherence: I would say that I think one is the family support so I think that if they learn from their parents or they have a supportive environment, you know, sometimes also there is a lot of secrecy, its really hard, you know, if like there are ten people in the home and nobody knows about it, and they have the meds in a cabinet somewhere and need to hide to take them and have two minutes to try to do that and get a glass of water. And so if you have
131 family support I understand that its just normal, I take an aspirin, I take whatever, and I take these meds .So in those patients that kind of get these medications as part of their routine, as I brush my teeth, I take the meds. So I think that family support is very, very important if you have a happy boy or happy girl, they stay in a stable environment, most of the time the patient will adhere. Valerie and Jeffs parents are examples of involvement and support. Valerie and her (biological) mother organize their medications together, and Jeffs fat her readies his sons medications and watches him take them. Since Valerie has some physical disabilities, her mother is closely involved in providing for her daughters needs, including monitoring her medications. Both Valerie and her mother seem to have made room for HIV and its daily demands in their normal routines. Jeff has other adults in hi s life who also make sure he takes his medicines. When he is at his aunts house or his close friends house (whose parents know about his HIV), the adults make sure that he takes his medicines. He has both support and supervision that help him adhere to his medications. Katie and Mark exemplify the adaptation to and acceptance of their HIV dise ase that comes from having mothers who have always been open and unashamed about this disease. Katie does not ever remember having to be secretive about her disease. H er description of her (adoptive) mother illustrates the no-nonsense and shame-free a pproach to HIV that is reflected in Katies good nature and acceptance of who she is: My mom, she always was open about it. She never sugarcoated, she never hid it from us, and it was never, like, not a discussion or topic. We could actually be sitting at the dining room table, and ask her a question, and she never hesitated to answer, so she would tell us, you know My mother is the free type of person, shes like, you be who you are, you are who you are, and you know what Im saying, if it is that no one dont like you for who you are, then screw them.
132 Marks (biological) mother, who was present for part of Marks interview, expressed the same sentiments about living with and accepting HIV, and being open with her son and not caring too much about what other people think: I dont keep any kind of secrets from him and I try to explain it to him [M]ost kids dont understand and children fear something if they dont understand it I dont live my life any different than you would live yours, my brother lives his, they all have to breathe the same. Theyre not Martians or anything like that, but for his sake [and] the children, you know, like if he cuts himself or hurts himself, he knows [what to do] Im not ashamed of what I have. Its a mistake I made when I was a chi ld and the first thing I will tell anybody, this is why, I was straight, I kne w for years yes, you can get it, yes you do need to use protection, this and this and this, and dont hide it. Thats the first thing that comes out of my mouth. Ambivalence and Silence: Zo, Diana, and Stephanie Many of the families displayed ambivalence and less involvement in their childrens disease management. Others either did not talk about the disease or were careful to keep the subject within the bounds of the household. Zoe and Diana had problems with adherence, and both were in families where the mother had either relinquished responsibility or felt some uncertainty about how best to exercis e responsibility. Stephanie and her family appeared to try to normalize life by not talking about her disease. Zo said that until I was thirteen, it was my mom who had to tell me when to take it [the medications] and how to take it. But after that it was like, she like gave me a choice to take it and not take it. When asked if she was now taking her medicines herself, and whether her mother reminded her, she responded, she dont remind me no more. Its just me, its all on me. Yet Zo, now 16, deferred completely to her mot her in matters concerning her health care. When asked if she knew what her viral load and T
133 cells were, she responded that she did not, but when probed about whether the doctor told her what those numbers were, she said, They tell me, but its kind of confusing, so I j ust let my mom deal with it. Later, she explained what made her resume taking he r medications after stopping for a month, she said, I started realizing what I was doing, cause she [her mother] was, she said, she said, Im not going to deal with you no more let God deal with you. So that made me feel kind of bad, cause I was hurting her. I wasnt really thinking about her at the time. So I started taking it. Zo s disease management reflects a keen dissonance in her understanding of, engagement in, and responsibility for her health. She has assumed responsibility for taking her medi cations, but not for engaging in her health care and treatment during her clinic visits. He r engagement in the management of her HIV disease seems not to be so much for her own benefit as it is for her mothers benefit and mollification. Dianas adherence seems to have been influenced by the ambivalence her mot her, Donna, expressed about the merits and safety of antiretroviral therapy. Dianas knowledge of her medications and familiarity with viral load and CD4 counts, coupled with her mothers support and stable family life, might have helped her to maintai n good adherence. However, her mothers decision to stop taking her own antiretroviral medications in favor of herbal remedies, may have influenced her daughters atti tude toward the medicines she was prescribed. In the mothers focus group, Donna voiced serious reservations about the health care system, though she did not say that her daughter had stopped her HIV medications. She only said that she used herbal therapies to treat some of the side effects of the medications. Nevertheless, Donna was di ssatisfied with the care provided by the health care providers, and was extremely critica l of their
134 treatment towards her. She was also very doubtful about the veracity of public information about AIDS, AIDS vaccines, and an AIDS cure, and voiced her belief about political and economic motives underlying the cause, potential cure, and treat ments of AIDS. Her distrust of the system, as well as her belief in the toxicity of HAART, may be having an effect on how Diana approaches her own HIV disease management. Stephanie seemed both engaged in and knowledgeable about her health, lab tests, and medications, but still seemed to be having difficulty maintaining good adherenc e. Of interest in Stephanies case is her family history. She mentioned several ti mes that she knew nothing about her biological mother and she lived with relatives in her home country until she was fourteen. Her biological father was in the United States a nd Stephanie relates her coming to join him here in this way: [M]y dad was in A merica. I was the type of children my dad never wanted. So the only reason I came to Ame rica is because of my stepmother. The first time she saw me she knew I was my dad dau ghter. But my dad didnt want to believe that I was his daughter. In addition to her fathers initial ambivalence, and her early family instability, Stephanie said that there was little talk of her HIV in the home. While she maintained that her family treated her jus t like I was a regular person, just like every, they dont treat anybody any different, the fact that My dad just, we just live in the house just regular, none of the family never mention i t seems to indicate some reticence to confront and accept Stephanies HIV. When a sked if her family ever mentioned her disease, she said, Yes, they ask me how my low lev el is [presumably meaning, how low my viral load level is], and I tell them .[m]y blood, how my like my blood thing is. How my labs, how the virus is doing. Beyond that,
135 Stephanie insisted that she was doing well because she didnt think about her HIV that much, and no one reminded her of it. Effects of Stigma on Family Dynamics The women who participated in the mothers focus group did not bring up the subject of stigma, but they shared anecdotes that intimated both felt and enacted s tigma (Scambler 2009; Lekas et al. 2006) in interactions with their families. The wome n were asked to describe the circumstances of their own diagnosis, how they reacted, and whom they involved initially. Rita was married and had a four-year-old daughter whe n her husband was diagnosed. She and her daughter were tested subsequently. She described her reaction and those of her family and in-laws: My initial reaction was complete and utter disbelief .My family reacted, I think, well during the circumstance. My husbands family reacted terribly and we dont speak to this day [Emphasis added.] Teresa exhibited the secrecy that continues to mark this disease, even within fa milies: I was actually diagnosed when I was having my son. I have five kids and hes the baby [A]t the time my son was born, I had my father, my mother, and my sister, cause those are the only ones that I have down here. I had told my older sister and my youngest aunt and that was it. So basically nobody else know. My other four children, they dont know They know we take, me and the baby takes medicine, but they dont know what its for. [Emphasis added.] Anitas reaction of denial and anger certainly characterizes other dise ases, but is especially prevalent among those who have HIV: I didnt tell them [her family] right away. For a while I ran away from it, and was in denial And I started using drugs and staying on the streets a lot. I didnt want to deal with it, and I was in a very abusive relationship at the time, so it was just a lot going on. He was in denial, he didnt want to admit it, and he didnt until he died. I was very angry about it. I was very angry at him. [Emphasis added.]
136 Peer Relationships and Support Culture and Stigma in Peer Relationships Peer support for the participants in this study is suggested by the number of friends or other individuals in their social network with whom they have shared their HI V diagnosis. The data show that those who have less peer support, as evidenced by their confiding in very few or no friends about their HIV status, generally had more diffi culty with their medication adherence. This should not be interpreted as a causal factor in adherence, but rather may be a reflection of the fact that those who are less a djusted to and accepting of their own disease status are both less adherent and less likely to s hare their status with others. Only these tentative correlations, and not causality, could be suggested in this study with its small sample size. That said, two of the y oung women who had undetectable viral loads and were thus very adherent to their medications also had not disclosed their status to anyone, so the correlation between peer support and medication adherence represents but one of many possible facilitators in an adolesc ents efforts to assume responsibility for his or her disease management. The adolescents discussion of disclosure to others revealed the social world of adolescence as well as cultural mores surrounding family privacy and A IDS as a stigmatized condition. The decision to disclose or not to disclose centered around the issues of trust and normalcy, as many decisions about sharing do in adolescence. The participants who shared their diagnosis with a friend all talked about trusting that f riend to keep the information secret. Those who did not disclose to any friends mentioned the risk of having their information publicized if they told anyone. The following example s demonstrate this:
137 Because kids are immature and like, theyll spread it around. [Angela, 17] Because then theyll tell the whole school They would pick on me. [Olivia, 13] Because I dont want everybody to know, cause everybody might talk, send it around I dont like, I dont want everybody in my business. [Jeff, 16] You tell somebody, theyll go run back there, run back to that person and now the whole world knows. [Sean, 20] In addition to just wanting to keep their business private, these young people feared the stigmatization that accompanies an AIDS diagnosis. The participa nts were asked about the knowledge and attitudes of their school mates, and several mentioned their peers scorn were they to learn of a friends AIDS, as well as the use of AIDS as an insult toward those who were different or those who demonstrated an understanding of AIDS. Paula, who was knowledgeable about and comfortable with her diagnosis, especially at her age of 13, nonetheless denied her status: just cause you know something about it, just cause you know a lot about it doesnt mean you have it, but I do have it, but I dont want the whole school knowing. Zo discussed her experience with a boyfriend and other peers: Well, I had a boyfriend, but its like, if I asked him like certain questions, like what if, and he was like, if that was so, I couldnt be with a girl like that, so like, three months later I broke up with him. And then I asked my friends, what would they do, and they was like, I couldnt hang around no one who had it, so I just left it alone, and just kept it to myself. Keith echoes this idea of peoples wanting to keep their distance from people wi th HIV. He said, And the type of people that I hang around and I have friends with? Some of them is not the type that I tell, because of their mind frame and the way they think. Because once a black person like, the ones I hang around, hear about a disease or something, its like oh, well, I cant be around you, I
138 cant, I dont know, I just got to be my distance. 'Cause they fear that if I cough in their face, something going to go wrong. The stigma and secrecy surrounding a subject like AIDS was experienced v ery differently among the adolescents in this study. Rachel, sixteen at the tim e of her interview, and Mark, who was fourteen, were the only participants who construed the secrecy about their HIV status as a lie. More than once Rachel voiced her unease with keeping her status a secret from people: I was just like, I dont need to lie to him anymore. Like Ive lied to so many people it bothers me. And at another point: it was like I just felt like I was hiding a large part of my life from him so I de cided that I was going to tell him. When asked what the worst thing about having HIV was, Rachel replied, I dont know, I mean one thing thats always bothered me is having to lie to people that I know. Its so secretive that its like, and it doesnt even need to be, just the fact that it has been in my case, I guess. I wouldnt say that would be the worst thing, I would say thats the thing that bothers me the most. When Mark was asked what the worst thing about taking HIV medicines was, he replied, Whenever you just met a friend that they want you to spend the night you have to take your meds over there and they ask, why you gotta take that for? Then you dont want to lie to them. Katie was very open and comfortable about her diagnosis. This seemed to be a consequence of her adoptive mothers openness and conviction. Even though Katie admitted to keeping her diagnosis from one boyfriend, overall she characterize d disclosure thus: I told other people if they asked me. She never told me that I didnt have to tell, you know what Im saying If they cant accept me for me, then oh well, if you dont like me. Thats why I dont, Im an
139 open, free person about my illness. Thats just it. Its like Im not going to sugarcoat who I am or what I am. Nothing in this world can stop whats going on in my body, besides me taking my medicine and doing what I have to do for myself, but someone elses opinion about it doesnt even matter, because if you dont like me because of that, obviously its not a good thing, right? Lucy, on the other hand, had no desire to share her HIV status with any of her friends. When asked to give a reason for not telling a friend or friends about her HIV she gave an answer that reflected the nature of cultural beliefs: she pointed out the way things are rather than giving a specific reason for her silence. At firs t, she responded, I dont tell people. When probed for a reason, she said, Cause I choose to keep it to myself. As I think of it as a secret that only I can share it with my mom and my sister. Stephanie echoed the secrecy surrounding her diagnosis when she said, I would not let my friend know Im on medicine. Because my parents, even at the house, my parents doesnt even mention it, why would I even try to let my friends know that Im taking medicine. Vanessa said she did not think she would ever tell anybody, even as an adult because it was none of their business. She conceded that she would make an exception in the case of a sexual partner: Yeah. Thats the only way Im going to tel l. Of the ten adolescents who talked about what is was like to share their status wi th someone, six made a point of including how the virus was transmitted to them. They all mentioned being born with it or having gotten it from a parent. Nina said, I told him I was born with it and that it wasnt my fault (emphasis added), when she disclosed her status to a romantic partner. Keiths girlfriend, upon learning his diagnosis, t old him it was not his fault. While this may infer a feeling of blamelessness, nonethele ss, most of the adolescents still refused to share their status with others. They alread y perceived the general stigma of AIDS and presumably did not think that they would be accepted even if
140 they made it clear that they were not responsible for contracting the disease Thus, for both those who disclosed with the disclaimer that they were born with it and those who did not disclose, the perception of stigma was salient. The secrecy surrounding the adolescents HIV status has had a logistical effect on adherence, in addition to its psychosocial sequelae. Diana, Angela, and Stephanie mentioned choosing not to or forgetting to take their medicines when they stayed over a t a friends house. Vanessa, on the other hand, maintained that, I take them with me everywhere because I never know if Im going to be back in time to take them So when I take, I always get a little bag, and I put it in there. Then I get water bottled water, and I take it. When asked what she did if people were around, she said simply, I go in the bathroom [to take the medicine]. Thus, while it would seem that support from friends would facilitate adherence, the attitudes toward sharing personal information about a stigmatized condit ion seemed to take precedence over this support, so that some of the adolescents seemed more comfortable with people not knowing and could still be adherent, while others felt more at ease sharing their status. Even among those who shared their diagnosis wi th friends, however, there did not seem to be an accompanying supportive interaction that came from discussing the participants illness. Diana was the only participant who s aid that having friends who knew her status makes me feel like there are people that care. Like theyre not going to discriminate. Yet even she said that she and these friends di d not discuss it, and she did not feel the need to do so.
141 Sexual Relationships and Disclosure Peer support is perhaps most important in sexual relationships, because both disclosure of HIV status and medication adherence are key strategies ass ociated with reducing HIV transmission. All of the study participants, both the sexually acti ve and those who were not yet sexually active, knew that the practice of safer sex m eant using a condom during sexual activity. Table 4.4 shows the participants who have ever been sexually active, current relationship status, and disclosure of HIV status t o partners. Paula and Bridget were included, because they had discussed disclosure to boyfriends but had not explicitly stated whether they were, in fact, sexually active. Of t he six participants who were or had been sexually active at the time of their interv iews, five had disclosed their status to at least one partner. Katie and Diana said that they dis closed to their most recent partners, but not to past partners. Katie described the discomfort she felt because she had not disclosed her sta tus at the outset of her first relationship. She compared her feelings for this person t o her feeling for her subsequent partner, whom she told about her illness right away: Table 4.4 Sexual Activity Name Ever Sexually Active Sexually Active not confirmed Current Boy/Girlfriend, Sexually Active Past Boy/Girlfriend, Sexually Active Disclosed HIV Status Paula ? ? Yes Bridget No Boyfriend ? Yes, after one year Nina Yes ? Yes Katie No Boyfriend Y No (first) Yes (second) Vanessa Boyfriend, not sexually active Y No(Current) Yes (Past) Diana No Boyfriend Y No (at age 15) Yes (recent) Keith Yes ? Yes Sean Yes ? No
142 I could not tell him [first boyfriend] why I liked, I really liked him [second boyfriend], because he understood about my illness. He [second boyfriend] was not afraid of me, he accepted me for all of me, you know what Im saying, which he [first boyfriend] did not know, but that was my fault, because I shouldve told him in the beginning, which made it so much easier with Matt 13 [second boyfriend]. If I wouldve told him in the very beginning, it kind of wouldve made it a lot easier with us I cant believe I did not tell him, I cant believe Im in this situation, I cant believe this, cause Ive always been a person that just really was fre e and open . But when it came down to this guy, I was like, why, why, why, why. Everybody I could always tell, why, what was so different about him. I dont know, I really did care for him so much, and I think, I think was the fact that I let my emotions get the best of my brain, you know what Im saying. We see that even Katie, who was very comfortable with her status, had a difficult time disclosing to a romantic partner. Diana disclosed her status to her most recent sexual partner before they had se x, and they used a condom. When asked how often she used condoms, she replied, All the time, but when asked if she ever did not use a condom, she conceded that she had not used a condom when she was fifteen. She learned her diagnosis at fifteen, and said t hat she had unprotected sex after learning her diagnosis, at the time that she lost her virginity. Interestingly, Dianas mother, Donna, had not been ready to tell her daughter t hat she had HIV even at Dianas relatively advanced age of fifteen, insisting that her daughter understood, without knowing her diagnosis, the universal precautions that she must take in order to prevent HIV exposure through blood and sex. She said, I always emphasized to her, Diana, you know when youre playing in the playground, dont ever touch anybodys blood, and she learned that when she was like three years old. And dont let anybody touch your blood, and she says, I know, Mom, you know, so she knew and she told me one time, she says, You know, my friend is so stupid. She had sex with somebody and she didnt even use a condom. Now she didnt know she was HIV-positive, so when they used to come to me and say, well, she has 13 Pseudonym.
143 to know because she can spread this now, I said she is very well educated. She knows not to have sex without a condom, cause she doesnt know she can pass it on, but shes, but she know, and they asked her all types of questions and they knew she was up to date on things. Nina was in a long-term relationship (at least two years) with a young man who knew her status early in the relationship. Within a few weeks of beginning to see each other, Nina felt that she had to tell him her status. She described it this way: the first day, well, not the first day but like a couple of weeks before that I had the feeling I had to tell him, I had to tell him, I had to tell him. I had that thing stuck in my head, Im like, no I gotta tell him so I told my mom and my mom was like, Dont tell him, dont tell him yet. Youre gonna lose him. I was like, no its not that so and I told how I was like, Im just gonna tell him, if he leave me, he leave me, I dont care. So I sat down with him, I told him and he was shocked. He was shocked but weve been through thick and thin. Nina was just shy of eighteen at the time of her interview, so disclosure to her bo yfriend occurred when she was no more than sixteen. With regard to protected sex, Nina admitted that her boyfriend did not always use a condom, but he understood the implications of his actions, and was tested for HIV regularly. The fact that s he decided to disclose her status to a boyfriend when she was only about sixteen, despite her mothe rs admonishments, indicates Ninas fortitude and willingness to accept her HIV as a part of who she is. As we shall see in the next section, she was also one of the adolescents w ho learned her HIV diagnosis at a young age. This may have allowed her the tim e to adapt to her disease, and thus be more comfortable in disclosing to a potential boyfriend. The cases of Keith and Sean were more problematic because they were not taki ng antiretroviral medications, were sexually active, and male-to-femal e transmission of HIV is more efficient than female-to-male transmission is (Stine 2003:212). Kei th told his girlfriend of his HIV status at the beginning, and he said that he knew about using
144 protection. Yet, he admitted that condoms were not used every time they had sex, and hi s girlfriend had became pregnant, lost the pregnancy, and was, at the time of t he interview, pregnant again. Sean had a girlfriend for about two months at the time of his interview, and said that it probably would not be a long-term relationship. For this reason, he did not disclose his HIV status to her, though he said that they used condoms during sex. He also was one of the participants who had told no one outside his family. When pressed about whether he could foresee disclosing his status to anyone in the future, he responded: If I been with a girl for about two or three years, then I tell her. Its bee n so long why not?...If our relationship really good and she really like me and I really like her and we planning on being together for a long time, then I sit down and say hey. Sean did, however, see a problem, including possible legal ramifications, with having a sexual relationship with a woman and not disclosing his status to her, but he could not see himself telling a woman at the beginning of the relationship: Interviewer (I): Whats the problem? Sean (S): Im having sex with her but not telling her what I got. I: So why dont you tell her? S: I cant do it. I: You just cant do it. You would have to wait awhile. Why, what if you told her? Are you afraid to tell her? Would you be afraid to tell her? Would you feel embarrassed or like ? S: Id be afraid and be embarrassed at the same time. I: Why, what would you be afraid of? S: If I tell her thats gonna stop our relationship. I: You think she would leave you? S: Yeah, stop our relationship. Then she go back, probably tell her mom and dad, I was with him for such this long and he didnt told me. I: And now hes telling you. S: Now hes telling, the police get involved and Ive been messing with her daughter. I: So why dont you think its a good thing just to tell her right at the beginning, then theres no problem? S: She wouldnt want to be with me because Im sick, Ive got a disease.
145 In summary, the adolescents who were sexually active knew how to protect themselves and their partners during sexual activity, but they did not all practic e safer sex, nor did they declare that they did or would disclose their status before engaging in sexual activity. These results point to the difficulty and fear of discussi ng a sensitive and stigmatized issue with sexual partners that all of the adolescents may fac e. Clinicians Discussions of Sexual Behavior Adolescents are, however, prepared for the eventuality of disclosure and negotiation of safer sex through discussions with their health care providers. All of the interviewed clinicians reported that they addressed sexuality and sexual ac tivity during their clinical encounters with adolescents. These issues included sexual pre ference, condom use, sexually transmitted infections (STIs), contraception, disclosure to s exual partners, and the legal ramifications of HIV transmission and non-disclosur e. The three nurse practitioners tried to approached the subject of sexual behavior within the context of the adolescent culture. Carol and Ann often introduced the subject of sex by first asking about the patients life at school and with friends. Carol recognized that for these young people, especially those who may appear a little uneasy somehow its easier to talk about friends than yourself and I think thats done for a lot of different things as well, but I think if you can get a gauge of whats going on with their friends, and then they get a little bit comfort-able talking about that. Like its somebody else, then its kind of an ease into whats going on with them. Ann also recognized the importance of understanding the patients social environme nt, and might begin the discussion by asking the patient if any of his or her friends had girlfriends or boyfriends. She explained, Thats something I lead in [with] because a lot
146 of times what their friends are doing is very reflective of what theyre pot entially doing, so those are my early lead-in questions. The adult nurse practitioner, Ed, also recognized that the patients friends, and especially romantic partners, may influence their behavior. Because of th e importance of safer sexual practices among the infected youth, not only to prevent transmissi on of HIV but also to avoid exposure to and possible infection with other STIs, the disclosure of ones HIV status and the use of condoms become primary considerations in a sexual relationship. Yet, these are difficult actions to execute, and may be fraught wi th anxiety, fear, and even danger. For this reason, Ed encouraged his patients to bring their partners to the clinic so that he could facilitate the discussion and provide information and explanations relevant to the couples relationship. Four of the clinicians said that they brought up the legal implications of not disclosing ones status or using condoms, and the fifth alluded to them by speaking of the repercussions of not using condoms. Florida statute 384.24 states that it is unlawful fo r any person with HIV, who is aware of his or her status, to engage in sexual intercour se with another person unless that person has been informed of the HIV and has consented to the sexual intercourse (Florida Legislature 2010). This complicates the sexual relationship, because it not only requires disclosure of ones HIV status, but oste nsibly also requires that the infected individual obtain and retain proof of the partners awareness and consent. While all of the clinicians addressed the importance of disclosing ones stat us and using condoms, for both legal and health reasons, their responses to patients fear, ambivalence, refusal, or just human error regarding condom use and disclosure within
147 their sexual relationships were markedly different. The two physicians took a m ore clinical approach, while two of the nurse practitioners were more instructiona l and disciplinary, and the third NP was realistic and direct. Though the interviews did not contain actual conversations that the clinicians had with patients, I think that t hey do reflect how they communicated the information to their patients. Examples of ea ch clinicians style follow, and they raise the issue of how the clinicians sty le may affect how and what the adolescent shares with the clinician, and how and which messages are received by the adolescents. This will be discussed in Chapter 5. I also try to do some sex education like how it can be transmitted, about protecting themselves or using condoms, both for females and males, addressing the issues about the law in Florida, like what happens how you need to disclose how to address talking to a partner and all the different aspects, so that if they have questions about like sexual practices a lot of kids have a lot of questions We also provide condoms in our clinic. We give them free condoms and we also tell them the other places they can go . [Dr. Flynn] do you have a partner or have you been sexually active? and I also try to relate that with disclosure, so I tend to be actually very up front with that. You know, You really need to disclose your partner, because you can get in trouble, and your partner can make charges against you and all that. But then we try to relate that to the protection that they need to use, so Because you have HIV, you are at a higher risk of getting other things that may be harmful for you, and in the same way that you dont want to transmit HIV, you also dont want to get other things that you dont want. You know, we kind of go over When do you think that youre going to be ready to be sexually active and if you are in a long-term relationship and you think that you will be sexually active in particular with this person, you know that the disclosure should come. So I kind of try to say, You need to feel comfortable with the person that youre going to disclose your HIV status. [Dr. Lane] So what my message about that is, This is what you should do and this is why. The person youre having sex with has a right to know that its possible they transmit HIV. They need to realize why condoms are so important, but if you choose not to tell them you cannot have unprotected sex, you cant. And I think some of the guys, and I just had a pretty in-depth kind of guy visit the other week Its like I can almost see that hes
148 toying, hes never had sex before, but hes like right there and hes undetectable, hes toying with having sex but having it not be protected. And its like, No, no, no, thats not an option, and not telling, and Im like, No, no, no, you cant do that. [Carol] I try to do things like, well, what might be some reasons to choose not to have sex? And I try to get them to give me some ideas, and then I try to then give something back. So well talk about pregnancy risk [w]ell talk about sexually transmitted infections, of them getting another infection. We talk about it in terms of them exposing somebody else [W]e get into disclosure just emotional, definitely with some of the younger patients Ill talk about, you know, not just the risk of STIs and pregnancy but also, When you go to have sex with somebody, thats a big choice, and is that the first thing you want, are you ready to do that?...As far as disclosing to partners, I try to let them say what their concerns ar e about it and we try to talk about that. I do have a good little [information] packet and sometimes Ill use the packet with them to try to talk about maybe getting ready for the process. [Ann] we get into the conversations too that are harder because sometimes if theyre sexually active theyll say Well, no, Im having sex now and Im not telling my partners because Im just kind of fooling around with people, but I make sure that condoms are used, so I dont tell them. And I think the pediatric response to that may be, you have to do that, you have to do that, cause its that parenting thing that they like to do Im totally different. Im like in the perfect world, people would tell each other that that you have something that can be transmitted . This isnt the perfect world and do people do that? No. Its great if you can, if you cant but youre having sex and people arent going to stop having sex, just make sure that you use condoms, make sure that youre protecting yourself, protecting who youre with. Is disclosure as important if youre undetectable and youre using condoms, or youre using condoms? You know, thats a very personal decision that you have to feel comfortable with, and you have to see whats okay for you and what you can live with if something happens. [Ed] Support from Other HIV-Positive Adolescents A final significant detail absent in the interviews with regard to peer suppor t was any talk about wanting or obtaining support from other adolescents perinatally infec ted with HIV. Dianas mother, when approached about this research study, had hoped that, by participating, her daughter might meet other positive adolescents, becaus e until then,
149 she did not know any other infected young people. Beyond that, however, four participants mentioned having gone to a camp for HIV-infected children at one ti me in their lives. None of the adolescents brought up the issue of support from other HIV-positive adolescents, though not all of them were directly questioned about it. In response to a question about whether they would like that kind of support, Stephanie and Diana specifically said that they do not need it, though Diana toyed with the idea Stephanie: Actually, Im okay. Its because my, I like, Im really g reat with it, because my family doesnt make me feel, um, they never mention it, treating me bad. And I like it because they never mention it, and I feel kind of better because I dont think about it. Diana: Might be good, but its not going to help, cause I dont have a problem with it anymore. But the lady, I forgot her name, she just told me about the YES 14 [Program] I was going to try that out. Summary of Findings for Hypothesis 2 The adolescents who were very adherent to their medications were those whose parents and caregivers were open and accepting about HIV in the adolescent and in the family. These adolescents also had adults in their lives who were involved in their disease management, or they and their caregivers had designated clear roles i n the process of management and the youths were ready to assume these roles. The adolescents who had difficulty taking their medicines as prescribed were thos e who had less involved and less open caregivers and seemed not to be equipped with the medical knowledge and psychosocial resources to be independently responsible. The support of peers was extremely low overall among the participants, because most had not disclosed their diagnosis to any friends, or had perhaps told one or two persons. Thus, their peer networks did not provide acceptance and support that comes 14 Youth Education Services.
150 with sharing personal details with peers and helps adolescents cope (Sherman et al. 2000). The ability to disclose this kind of information was also problematic for some of the sexually active adolescents. While adherence among those who had share d their diagnosis with peers was generally better than among those who had not, there was not a strong correlation, and it seems that the cultural salience of keeping secret s may have been more conducive to adherence than any potential help they would have gotten from friends. The problem with keeping the diagnosis a secret, however, was that it some times interfered with pill taking, as when adolescents were spending time at a fri ends house or were involved in a social activity at the time when medications were normall y taken. Disclosure of HIV Diagnosis to the Child (Hypothesis 3) Carol, one of the nurse practitioners who treats adolescents at the USF pediatr ic clinic and was interviewed for this study, underscored the importance of disclosure i n the childs progress toward engaging in and taking responsibility for disease mana gement: until I can use the word HIV or the letters HIV with the patient I think once you can use all the language and all the terms and just speak freely, I think theres a shift in like your history, you know. At some point I kind of turn this way and I direct the questions to the patient and I think some kids just naturally respond to that and answer and do the best they can and if they cant then they look at the parent. Or Ill look at the parent sometimes [and] the parent or caregiver doesnt really realize and so theyll keep answering and youll be like no, they can tell me how theyve been feeling. Children have to learn their diagnosis sometime and have been disclosed to at a wide range of ages, but the event is imbued with the fear, anxiety, and guilt that accom panies perinatal HIV transmission. This prompted the third hypothesis: The timing and circumstances of disclosure to the adolescents have an impact on their subsequent adherence behavior
151 The adolescents who learned their diagnosis at an early age could not, for the most part, remember exactly when the disclosure was made. When probed for an approximate age, most estimated an age of about five to eight years old. Only Mark remembered his age at disclosure, because it was a week before my tenth bir thday. Thus, in Table 4.6, their age at disclosure is noted as less than or equal to age ten, and they were considered earlier disclosures. Since the clinics which are part of the Florida Family AIDS Network have instituted a policy of disclosure by age thir teen, but others have suggested an age as low as ten (Myer et al. 2006) and the American Soci ety of Pediatrics recommends disclosure to school-age children, any disclosures occ urring at age eleven or older were established as later disclosures in this study. Table 4.5 shows participants age at disclosure and their adherence, based on two measures, viral load and recall. Nine of the seventeen participants (53%) learned their diagnosis at the age of 10 or younger, and all of them, with the exception of Keith, were practicing good or excellent adherence. At the time of their interviews, f ive of the nine (56%) had consecutive undetectable viral loads (see Appendix F).
152 Since this study was limited by the small number of adolescent participant s, no statistically-based conclusions between age at disclosure and current adhere nce level can be drawn. However, it is noteworthy that all but one of the adolescents who learned tha t they had HIV at a young age were practicing successful adherence, as indic ated by consistently undetectable viral loads or periodic undetectable viral loads. The ex ception was Keith, who had problems with his medications and was prescribed treatment interruption. Conversely, all but one adolescent who learned his or her diagnosis later 15 Adherence based on recall: A: Never or less than o nce a month; B: Misses once a month; C: Misses twic e a month; D: Misses 3 or more times a month 16 U: Undetectable Viral Load 17 Bridgets viral load spiked following her intervie w. 18 At least 2 consecutive undetectable viral loads an d others under 1500 copies/ml. 19 Viral loads above 1500 copies/ml 20 Olivias case may have been affected by viral resis tance. Her medication regimen was changed soon after her interview. Table 4.5 Age at Disclosure and Adherence Name Age at Interview Age at Disclosure Adherence Based on Viral Load Adherence Based on Recall 15 Paula 13 <10 U 16 B Bridget 18 <10 U 17 B Lucy 19 15 U A Rachel 16 11 U A Valerie 16 <10 U A Mark 14 <10 U A Nina 17 <10 U A Katie 22 <10 Good 18 D Vanessa 16 <10 Good A Jeff 16 <10 Good A Zo 16 13 Fair 19 D Angela 17 12 Fair A Stephanie 20 17 Fair D Olivia 13 12 Fair 20 A Diana 19 15 Fair C Keith 18 <10 N/A N/A Sean 20 16 N/A N/A
153 were having greater problems maintaining adherence or reaching undetectable viral loads. These exceptions will be addressed at the end of this section. It should be reiterated that sometimes lower adherence to certain regimens can still result in viral suppression (undetectable viral load), and optimum adherence doe s not always suppress the virus to undetectable levels. This is because viral suppres sion and optimum adherence levels also depend on the specifics of the antiretroviral regime n and on the presence of resistance to medications (Maggiolo et al. 2005). As with Keith a nd Sean, some patients whose treatment has been interrupted can sustain low le vels of virus (Noguera et al. 2010; Castro et al. 2010). Nevertheless, high adherence to medicat ions is necessary for viral suppression and low adherence increases the risk of a detect able viral load, that is, the failure to suppress the virus (Martin et al. 2008; Bangsberg 2006) a nd the risk of viral resistance (Veinot et al. 2006; Quinn et al. 2000). Profiles: Earlier Disclosure of HIV Diagnosis The disclosure of HIV diagnosis to children at an early age does not cause excellent adherence, but seems to result in adaptation to both the medical and socia l challenges of HIV in their lived experience and in a sense of well-being de spite these challenges. Adaptation to the disease and a sense of acceptance seemed to fos ter both an internal fortitude and an external routine that made adherence behavior possible and relatively easy. Short profiles of several of the participants will illust rate the effect of earlier disclosure on later adaptation and adherence. They reveal how accustomed the adolescents had become to HIV as a part of their lives, since early disclosure ha d made it part of their lives for so long.
154 Jeff, 16 Jeff is a quiet, polite, 16-year-old tenth-grader. He said he learned of his HIV disease when he was very young, and when asked how he felt about it now, he said, Im kind of used to it now. Ive been growing into it. He also believed that it was good for children with perinatally acquired HIV to be told about their disease when theyre very young, because then [t]hey can grow into it as a teenager. The early dis closure seemed to make the disease much less disruptive in his life now; as he said, I dont really think about it. I just live my life as a teenager. Paula, 13 Paula is extremely forthcoming and knowledgeable about her HIV disease. She is 13 years old, and has known her diagnosis since she was very young. She described he r disclosure: Im thirteen right now and I dont remember when or who told me. I think I grew up knowing it. I dont remember, I think it was the doctor, but then again, I think it was my father. I dont really remember. But I knew it was for HIV. I kn ew it was HIV medication I was taking, because my dad left the pill bottle on the counter and when he left, I read it, and it was for treating HIV, and I asked him and he said yes and t hen, I knew. Katie, 22 Katie is in her early twenties, and in college. She has lived with her adoptive mother since she was a baby. Her biological mother had problems with drugs, and Ka tie was taken from her after birth. She had some contact with her biological mother whe n she was a young child, but it did not continue. She never knew her father. Katie was an
155 articulate and outgoing woman who was very comfortable talking about her life and her HIV disease, which, as noted above, seemed to be due to the fact that My mom, she always was open about it. She never sugarcoated, she never hid it from us, and it was never, like, not a discussion or topic...Unfortunately, I know, like, Id say about four years ago, my mom had gotten a little Spanish girl, and she had just found out when she came to this house, and she was twelve years old. She just found out that she had the virus. And Im like, she was born with it, and her mother never told her, and I was like, wow, I cant never really imagine that, cause Ive always known. Nina, 17 Of the participants who learned of their HIV at a young age, Nina was most plainspoken about the disruption it caused in her life. She admitted that living with HIV was a nuisance: Well, I felt kind of sad and kind of like mad because I know it wasnt my fault, it was my moms fault when she was young, and I understand that and sometimes I kind of like argue with my mom about the situation, because like I got a life thats wonderful but its still like, I dont know. It dont feel right, like Im not living the life that everybody else is kind of living, like taking medicines every day and waking up at night Yet, Nina has lived with the knowledge of her HIV, and its everyday ramificati ons, since she was young: Well I found out when I was a little girl, I dont know what age but I really didnt know nothing about it The only thing that had told me was that you got to be careful when you grow up with your partner, you gotta tell them your condition and how everything is supposed to be, you have to tell him or tell her that if you do become with somebody you gotta use condoms and if you have a cut you gotta warn the person about the blood, they gotta use gloves or other materials. Summary: Earlier Disclosure The adolescents who were disclosed to early all seemed to take their HIV dis ease in stride. They were a bit more open about their diagnosis with others, though some stil l
156 did not think disclosure to friends was a good idea. Most of these adolescents also had a caregiver who was either involved in their care or was accepting of and open about the disease. These two elements of the adolescents lived experience, awarenes s of their HIV throughout childhood and caregivers who guided their process of adaptation to the presence of HIV in their lives, resulted in adolescents who were able and willi ng to adhere well to their antiretroviral therapy. They were also a little m ore likely to disclose their diagnosis to boyfriends or girlfriends than those who were disclosed to later though as we saw in the section above, other factors, such as stigma and cultural ideas about secrecy, also influenced disclosure to others. Profiles: Later Disclosure of HIV Diagnosis The participants who were disclosed to later seemed less comfortable with the ir diagnosis and had more difficulty adjusting to or accepting HIV into their lives They did not seem to understand fully and accept the importance of taking their medications eve ry day, and their adherence reflected this ambivalence. They were also more li kely to engage in risky behaviors, such as stopping their medications and having unsafe sex. Finally, there was greater silence surrounding the disease. Diana, 19 Dianas difficulty managing her illness, at least from a biomedical persp ective, has likely been affected by her mothers grave reservations about the biomedica l health care that she and daughter have received, as well as her concerns about the effic acy and safety of antiretroviral therapy. However, it is also evident that Diana did not accept and adjust well to her HIV diagnosis when she learned of it at age fifteen, saying it was kind of a shocker. She had problems with alcohol and drug use after she learned of her HIV,
157 and as mentioned earlier, she also had unprotected sex. When asked if she thought that the disclosure process could have been done differently, her response reveals that her adjustment was a difficult and confusing time: First, I wanted to know, like, I was mad at my mom cause she didnt tell me earlier, but then she explained, like, I wouldnt know what to do with that information at a young age. So I was like, whatever. But now that I think about it, like, I wish I wouldve known, like, when I turned eighteen or something, you know. Cause I know I would have been more mature about it. Cause I dont know, when I found out that just made my life go downhill. The delay of disclosure until an individual is an adolescent, such as Dianas disclosure at age fifteen, means that there is increased risk of unprotected s ex and hence possible exposure of HIV to sexual partners and exposure to other sexually transmitted infections for the HIV-infected adolescent before he or she le arns of the HIV diagnosis. Though awareness of ones HIV status does not necessarily mean that one will practice safer sex, disclosure to the adolescent allows for the discussion of the implications of unsafe sex to take place. Stephanie, 20 Learning her diagnosis at the age of seventeen, Stephanie has had only three years to adjust to this knowledge, years that mark her transition from adolescence to adulthood. Her life before disclosure was marked by secrecy a nd ambiguity. She lived in her home country until she was fourteen, but she never knew her biological mother. She lived with relatives until her father accepted her as his daughter, at the behest of his wife, Stephanies stepmother. She insisted that she did not know she was sick until after she arrived in the United States and was diagnosed while being treated in the hospital for an unidentified illness. At
158 that time, however, her parents did not share her diagnosis with her, but apparently fabricated an explanation. Finally, at seventeen or eighteen, her doc tor disclosed her diagnosis to her. Her reaction differs markedly from some of the participants who learned their diagnosis earlier, before they could be fully aw are of the implications: I didnt want to believe it because they, in my country, I heard when you have that sickness you die. And how am I going to have it. Its none of my parents, its none of my sister have it, my dad doesnt have it, so I didnt want to believe it Im still doesnt want to believe if I was born with it, because if I had it, one of my, my dad would have it, or my mom. Even I, I dont know, because I never know my mom. I dont know if she did have it or didnt have it. I never know my mother. Learning of her HIV disease at seventeen seems to have been especially dis turbing to Stephanie, because she knows little about her history and her family is general ly silent about her illness. For Stephanie, this silence is a sign that she is normal, like ever yone else in the household. The silence has extended into her social relationships, in which she is unwilling to make her status known to anyone: if I have a lot of people at my house, and I have people sleeping over, or if Im sleeping over at someone house, and that person doesnt know Im on medicine, and I would not let my friend know Im on medicine. Because my parents, even at the house, my parents doesnt even mention it. Why would I even try to let my friends know that Im taking medicine? She conveyed her fear of stigma, and the extreme caution she would exercise when deciding whom to share her status with: The person I will spend my life with and Ill know that person would never want to hurt me. I would definitely tell that person. And sometime I think if I ever told them, they might treat me differently because sometime when they talk about people who like, people with other sickness, I saw sometime, I wonder in my head, what if they know I had that kind of disease, how would they treat me. Would they ever be my friend, would they talk to me.
159 Sean, 20 Sean, like Stephanie, learned his diagnosis at the age of sixteen or seventeen. He had lived with his adoptive mother since the age of seven, and never knew his biological parents. Like most of the participants in this study, Sean was never curious about t he medicines he was taking. He explained that it was perhaps because he is slow t hat he did not know why he was going to the doctor and was not told his diagnosis earlier: I was young and like, Im kind of like slow, so I didnt like really catch on till the last minute. I could not understand what AIDS was and all that. I didnt understand all that. At 20, Sean was definitely aware of what AIDS was, and he understood the ramifica tions of sexual activity without disclosure or condoms. His ambivalence about disclosure, bot h to friends and to sexual partners, was articulated above. He did not share his disclosure with any friends, and said he would not share the disclosure with a romantic partner unti l he had been with her for two or three years and was sure that it was serious. Zo, 16 Zo was one of the least knowledgeable and engaged participants regarding he r HIV disease management. Disclosed to at thirteen, she remembers being angry with her mother for not telling her sooner. Yet, in the three years since disclosure, she has not made an effort to engage in her health care during her clinic appointments, and she ha s, on at least one occasion, stopped taking her medications for about a month. When asked what made taking the medicines as prescribed a challenge, she gave an answe r similar to the reason she gave for stopping them for a month: Sometimes I have problems, li ke, going on in my life, or stuff just on my mind. Though she said she had sole responsibility for taking her medicines, she did not seem to understand the implic ations
160 of that responsibility and thus did not seem ready to take that responsibility. Where as other participants found a way to make room for the medicines, even though it was often problematic and tiresome, Zo would sometimes just not take them. She is a marked contrast to Jeff and Valerie, both 16, who each expressed some irritation toward the ir situations. When I asked Jeff, How often would you say it comes in your mind, Im s o sick of taking these medicines? he replied, Like every two days. Yet, he rated the importance of taking his medicines really important, like a nine and said he neve r forgot to take them. Valerie said that sometimes she still got sad about her si tuation, both her HIV and her disabilities. When I asked her if, during these times, she ever thought of not taking her medicines, of not doing this anymore, she retorted with a laugh, N o, Im not that upset. For Zoe, the integration of her HIV and its management into the ups and downs of her life is still a challenge. As noted elsewhere, she also did not trust her peer s enough to reveal her HIV status in those relationships. Summary: Later Disclosure The adolescents who learned their HIV diagnosis at sixteen or seventeen were st ill trying to accept the reality of their HIV three or four years later Others who were disclosed to later, in their early to mid teens seemed to have accepted the reali ty of the diagnosis, but their management of the disease appeared to have been undermined by a lack of responsibility, substance use, and other difficulties in their lives.
161 Exceptions to Disclosure Age -Adherence Correlation Lucy, 19 Lucy is a curious exception among the adolescents who were successfully practicing adherence, in that she was disclosed to at the late age of fift een. While it seems that those disclosed to early in life were more comfortable with their diagnosis, more engaged in their health care, and therefore more adherent to their medicati ons, Lucy, too, exhibited this comfort and engagement, and registered undetectable vira l loads over the two years previous to her interview. She knew the names of her medications, was aware of their effects on her viral load and CD4 count, referred to them as my t hree special friends, and was the only participant who expressed apprehension about what a rare lapse, in what seems otherwise to be optimum adherence, would mean for her heal th. As noted earlier, she took her responsibility very seriously, saying, I got scared cause I thought something was going to happen [t]hat my count would go down really low. Really fast. She knew that she should never miss even one dose, because Even if I am undetectable, I want to stay undetectable. This concern and awareness seem s to have served her well, and may be due, in part, to her mothers role in her life and health care. Anita 21 Lucys mother, has been an AIDS activist and advocate for many years, so the importance of seeking and maintaining treatment, as well as taking responsibi lity for ones health, may have been instilled in Lucy even before she knew her own diagnosis Interestingly, Lucy has a sister who was also perinatally infected, a nd her engagement and adherence were markedly lower than her sisters; she has not had undetectable viral loads in a consistent manner. There may be individual psychological, emotional, and 21 Pseudonym.
162 developmental differences that affect the sisters responses to their HIV and their subsequent success at disease management. Keith, 18 Keith was one of the participants who learned his HIV diagnosis early, yet he was not successful at adherence. He was also the only one who was disclosed to early who seemed to struggle with acceptance of his diagnosis. One possible variable in hi s scenario was that he was the only one of four children who was HIV-infected. He tal ked about this during his interview and even at eighteen, he seemed bothered by the unfairness of it: My mom had gave us up for adoption, because she was strung out on drugs and she had addiction problem, and she also is infected, and she was the main reason that I really start just like, cause when I was young I was always mad, ever since I found out about it, I just always woke up on the wrong side of the bed and just always taking stuff so hard. He said that the worst feeling he had about his HIV was, Well, being the oddball out of your family. Thats what I feel like, like a oddball out of the family. Most of the other participants who were disclosed to early in their lives did not dwell on their HIV when they were young, probably because they did not understand it. Keith, however, seems to have been bothered by his HIV from early on. He talked about being lost and being angry at different points in the interview, and he is still w orking through it: [My mother] didnt want me to go through the same thing she went through, so its kind of like, I didnt go through all the drugs and stuff, but the anger and all, how to release and how to open up to people? Some of that I did go through But then,
163 when I heard about it, I wasnt mad, I was lost, I was lost. So I had to make a way to find that lost image in my head, that I had to register all this stuff about that. He credits both of his mothers with helping him to work through some of his confusion and anger, and believes that he has made progress. like right now today I wouldnt even be talking to you if it wasnt for her [biological mother], because she the one that, her and Debra [adoptive mother] were the ones that opened up to me that I had to let things out to certain, to people, not just certain people, just to people, and let them know how I feel, just so I wont have a lot of stuff build up inside you and all of that stuff. Cause it do, it cause you to where you be wanting to do things Keith continues to struggle with the unfairness of his HIV disease. The challenges of acceptance, coupled with medication side effects of nausea and fatigue, led to Keiths discussion with his clinician about continuing to take the medications. The last straw, it seems, was the new pills they put me on, these horse pills. Theyd be so big and my throat, I dont guess my throat got bigger Its like you got a little knot in your throat somewhere right up in here. And I hate that feeling Every time I took these pills, I had to get some bread or something thick, to take down, right on top of it I had to eat a little right then and then I take, and like fill the bottom of my stomach, and then put some more on top of the pills to smother them, just to make sure they was like gone. Keith said that the clinician directed him to continue taking his medicine until his viral load reached a very low level, and then he stopped the medications. Keiths difficulti es with adherence were evident in the months preceding his treatment interruption (s ee his viral load measures on page 117), so the clinician apparently saw the merit in tr ying interruption in order to delay the onset of resistance.
164 Rachel, 16 Rachel is considered a later disclosure at age eleven, based on the studys parameters, but this age is still generally one where sexual activity has not yet begun and is two years earlier than the age for disclosure set by the USF clinic. Thus this age is difficult to categorize and could be argued to be an earlier disclosure. Rachel learned her diagnosis at age eleven, because her best friends father told his daughter n ot to share drinks and straws with Rachel, because she had HIV. Once her friend knew, Rachels mother knew that she had to tell her daughter the truth. It was not allergies, as s he had been told for years, it was HIV. Rachel said that she must have known something was not right about the allergy explanation, because she was taking around twenty pills a day at the time. As with the others who were disclosed to earlier, Rachel did not reall y understand HIV so it did not occupy her thinking. She, like the others, grew up with it, and added to her understanding and acceptance as she matured. The evolution of her thinking is evident in the following, and shows how her situation at 16 is very different from, say, Zoe, who is 16, or Stephanie, who did not learn her diagnosis until she was 17: Well, I would have to say that when I first found out and throughout middle school, I just kind of put it out of my mind. It wasnt a problem for me and I just kind of forgot about it. I still knew that I had HIV but I just kind of let go of it, like, whatever. But as Ive gotten older, I guess I have thought about it more, and just like Ive gotten more opinionated about life, and I guess its kind of like now that Ive matured and gotten older, Ive gotten a better sense of how I look at life, and I dont look at my HIV as a bad thing. I look at it that I was put here for a purpose and Im going to help out the world with what I know, and thats been a pretty recent thing for me, because I would have to say like last year, tenth grade, I really started to get into like being HIV positive I was like, you know what, this is a part of me and I need to take advantage of that, so I have, I guess. It hasnt really happened until this year but thats what I decided the last year, if that makes sense.
165 Of particular significance and, it seems, benefit was Rachels recent att endance at national AIDS conferences, where she learned about others experiences of l iving with HIV openly and without shame or fear, and about being an HIV advocate and activist. Her profile reflects the conflation of her own dislike of lying to others in orde r to hide her HIV and becoming a person who does not have to. Challenges of Disclosure: Biological Mothers Disclosure of HIV status to a perinatally infected child is a highly charge d issue, and the pain, guilt, and shame that accompany the disclosure can be particularly a cute for the biological mother. Studies show that disclosure tends to be later or is desired to be later among biological mothers (Wiener et al. 2007; Ledlie 1999). In this study, a focus group was conducted with a group of biological mothers of infected children to explore the issues of adherence, health care, and disclosure from the mothers perspective It was hypothesized that the mothers attitudes and behavior regarding their own and thei r childrens disease management would influence how the children adapted to and experienced HIV in their lives. Included in their attitudes toward disease ma nagement were their ideas about the best time to disclose the HIV diagnosis to their chil dren. Six mothers assembled for the focus group. Four of the mothers in the group had children in the study. Five women were the mothers of infected adolescents, and one wa s the mother of an infected six-year-old child. Table 4.6 shows their childrens ag es at disclosure, along with the mothers demographic characteristics. Most of the se mothers disclosed the HIV diagnosis to their children at a later age.
166 Table 4.6 Biological Mothers in Focus Group Mothers Name Age Race/ Ethnicity Age of Child at Disclosure Number of Infected Children Uninfected Children Rita 41 White 11 1 No Donna 53 Black 15 1 No Anita 47 Black 12 & 15 >1 Yes Joyce 48 Black 9 >1 Yes Teresa 44 Black Not disclosed 22 1 Yes Nancy 43 Hispanic 11 1 No The women were mostly in agreement that young children should not be told they had HIV, because they would not understand what HIV was or its implications. They also mentioned trying to preserve their childrens childhood and a sense of normal cy by not disclosing their diagnosis to them. There was concern about the children telling others indiscriminately and also worry about what the children would think of their mothers. Because most perinatally infected children take antiretroviral medications from an early age, the mothers kept the truth from their children by giving vague ex planations or lying about why they had to take the medications. Rita voiced her reservations about disclosing to very young children this way: when we found out, it was, we had allergies and we took allergy medicine and we kind of have to give it to the kids as they understand it, because Im sorry, a five-year-old is not going to understand, Im sorry, theyre not going to understand what it means, and Im sorry, an eight-year-old is not going to understand. Maybe a ten-year-old, I doubt it, so you know, you just have to, you have to go slow. Anita told her children when they were 12 and 15, but wished that she had told them earlier, before adolescence: 22 Teresas infected child was six years old.
167 With my kids, I wish that I would have told them, started talking to them about it at younger ages, so that they can understand and because it was like I dropped a bomb on them when I told them, and being a adolescent, I really feel bad about that, and I wish I, if I could go back and do it differently I would, because it interrupted their whole life. Im a teenager, I have friends, Im looking at dating, you know, and now you just told me that everything has to be different, and if I wouldve went ahead and just told them, and just started educating them at a young age, so that as they grow, they can grow into understanding the virus, it wouldnt have disrupted their life as much. Anita also admitted that her delay in telling her children was a reflecti on of her own fears: But my own fear stopped me from doing what I needed to do as a mom and as a parent, cause I was so scared that, oh, theyre going to think Im a horrible person, oh, theyre not going to love me anymore, those were the things that was going through my head. Donna talked at length about being pushed to disclose to her daughter when her daughter was very young and also when she was a teenager, the age at which Donna finally told her. She expressed the feeling of not being allowed to control her and he r daughters lives, especially by health care providers, and conveyed a great deal of resentment at the attempts by the health care system to ignore her own knowle dge of HIV and ability to take care of her daughter: I said, what is she going to do with that information. Shes four years old at the time or three years old, you know what is she going to do with that information. Oh, now, mommy, now that I know, Im going to start taking better care of myself? Or is she going to go and, or if I tell her, dont tell anybody, you know, shes going to start having a self-esteem [problem], you know, or is she going to tell people and people are going to, cause at that time, you know, right now its not as bad as it was. And you know, they would just [say] I was doing her such an injustice by not telling her So I had a lot of doctors who pushed me into telling her, and I says, I have to tell her when I feel that Im ready. Im the one thats goi ng to have to deal with this, and when I feel that shes ready But they kind of forced my hand a little bit, and its rough how they play these games, but, so, you know, I was forced to tell her when I was unprepared. I knew she wasnt, the therapist said that she wasnt prepared
168 Teresa, whose infected child is six, also had reservations about disclosure. She believed her son was too young, and if told at this age, he would go to school and say, hey, guess what I have, and I know how he is, I know how hes so energetic. He is so energetic, and hes like, everything you basically tell him, hell just go and run it, run with it. However, she did not feel comfortable with the idea of disclosure when he reached the age of thirteen, the age by which the clinic had determined that al l children be told. She worries about the effect it will have on a young adolescent, because i ts like, you tell him at the age of thirteen, thats knocking them down, at the age of thir teen, cause that just getting to know who, trying to get to know who they are, and then they got friends. Anita brought up difficulties that perinatally infected children and adolesce nts may have with adherence upon learning their HIV diagnosis. Since most of the chil dren will have been taking antiretroviral medicines before they learn their diag nosis, the reaction to the disclosure may have a negative impact on how the child manages his or her disease henceforth. Anita said that this was why she thought disclosing t o her children at a younger age would have been beneficial: I felt like I should have told them when they were maybe, start talking to them about it, when they were seven or eight, nine years old, so that they can get an understanding and grow into it My daughter was doing great in school. She had no problem with taking her meds. Every day she took them. But as soon as I told her that, I dont want to take them. I dont like it, it makes me sick, its nasty, I cant swallow it, hiding pills, you know, I mean, the dog eating the pills, getting sick. It was just a whole process that, and it was worse than what it couldve been if I just wouldve opened up. The same reservations are implied among the group of adolescents in this study. Nine were disclosed to by their biological mothers, and eight by other caregiver s.
169 Though this is a small sample, it is interesting that the biological mothers we re more likely to disclose later than the other caregivers were, which is in line with the literature. Table 4.7 shows the study adolescents by age at disclosure and caregiver maki ng the disclosure. Of the biological mothers who disclosed to the adolescents in this study, four out of nine disclosed earlier, that is, to children under the age of ten, while five mothe rs disclosed later to their children. Conversely, of the eight other caregivers, i ncluding biological fathers (ostensibly all HIV-negative in these cases), five dis closed earlier and three disclosed later (or not at all, in the case of Stephanie). Table 4.8 summariz es these numbers. Table 4.7 Study Participants Disclosure by Caregiver Name Age at Disclosure Disclosed to by Paula <10 Biological Father Valerie <10 Biological Mother Mark <10 Biological Mother Nina <10 Biological Mother Katie <10 Adoptive Mother Vanessa <10 Does Not Remember Jeff <10 Biological Father Bridget <10 Adoptive Mother Keith <10 Biological Mother Rachel 11 Biological Mother Olivia 12 Adoptive Mother Angela 12 Biological Mother Zo 13 Biological Mother Lucy 15 Biological Mother Diana 15 Biological Mother Sean 16 Adoptive Mother Stephanie 17 Doctor
170 The focus group discussion, as well as the age at which the study participants were disclosed to by biological mothers, illustrates the serious reservati ons and anxiety that biological mothers have about naming their childs disease early in the chi lds life. Not only were they concerned about their childrens capacity to cope with the diag nosis at a young age, but they might also be plagued by their own fears about how their children would regard them. After all, the childs disclosure in this case is a lso the disclosure of the mothers HIV status. Summary of Findings for Hypothesis 3 The results demonstrate the merits of early disclosure of their diagnosis to children perinatally infected with HIV. Though there are many other factor s affecting the adherence success of these adolescents, early disclosure seems to be a powe rful factor in promoting the adaptation of the children to their disease, the consequent understanding that occurs early in their lives, and the ability to integrate the medications into their daily routines. However, the difficulties of disclosing the HIV diagnosis to a young chil d, especially by biological mothers, cannot be overlooked. Health Status and Adherence: The Illness Role in Chronic Disease ( Hypothesis 4) For an adolescent dealing with HIV disease since birth, the management of the disease can become tiresome. Adolescents trying to be more independent may decide Table 4.8 Early and Late Disclosure by Caregiver Disclosed Early Disclosed Late Biological Mothers 44% 56% Other Caregivers 62.5% 37.5%
171 that they do not want to continue taking their medicines, or at least desire a temporar y reprieve. If long periods of good health are experienced, adolescents may becom e complacent and this could lead to poorer adherence. The fourth hypothesis addressed these issues: Health status has an influence on an adolescents adherence. Very healthy or very ill individuals are more likely to stop taking their medicine, or to take it sporadically The participants in the study were all healthy at the time of their inter views, and none had had any serious illness episodes or hospitalizations in the recent past. When asked if they were ever sick or in the hospital, most said that they remembered such incidents, some quite serious, when they were young children, but as adolescents none had any serious illnesses in the last several years. All were health y, yet some were optimally adherent, while others had trouble with adherence. None voiced the idea t hat it seemed unnecessary to take medicines because they were healthy; all kne w that taking their medicines every day was necessary to maintain their health. As we ha ve seen above, other factors, such as psychosocial problems, lack of support, and inconvenience, led to problems with adherence. While there were no adolescents who were currently seriously ill, those that did describe past illness episodes did not say they stopped ta king their medicines. In fact, the illness was more the result of having stopped taking t he medicines, and spurred them to resume taking them. Sean was the only participant who may not have fully understood the necessity of taking the medications even when one was healthy. His explanation of why he had stopped his medications contained no mention of difficulties with taking them or maintaining adherence, which was the reason his clinical provider advised the
172 interruption. Sean saw it this way: I was doing good and they wanted to see if I c ould keep doing good off so they just gave me the chance to stop and they said I was doing good without it. His problems with adherence may have been due to his thinking that he was healthy and didnt need the medicines, but Sean had other problems, including serving time in jail, not knowing his biological family, and not understanding and accepting his HIV since his late disclosure at about the age of sixteen. The se psychosocial issues may have thwarted his efforts to adhere to his medicat ions. While this hypothesis could not be tested in this sample of adolescents, it does raise a related issue, that of understanding the medical implications of HIV and its management now that the disease is experienced as a chronic condition. Some of the participants iterated the importance of the medications to maintain their hea lth and keep their viral loads undetectable, and this indicated an understanding of treatment eve n during long periods of good health. However, most of the adolescents did not have a thorough comprehension of the implications of sporadic adherence on their future healt h outcomes and medication options, nor did they express the importance of low viral loads in reducing the risk of transmission to sexual partners. There may have been some l evel of carelessness or lack of vigilance as the medications have become more effe ctive, less cumbersome and harsh, and therefore, more routine. The exact blend of routine behavior and serious vigilance, and its effect on successful disease management, is an i ssue for further study and implementation in HIV education and counseling. Summary of Results The data show that the active engagement of adolescents in their HIV disease management (Hypothesis 1), the openness about and involvement in HIV disease
173 management of the caregiver (Hypothesis 2), and earlier disclosure to the inf ected child of his or her HIV diagnosis (Hypothesis 3) seemed to be associated with the adolesc ents better adjustment to the vicissitudes of disease management, especially adher ence to medications. Secrecy, shame, and stigma were underlying negative factor s in the adolescents ability and willingness to share their diagnosis with peers a nd sexual partners, and to practice optimum adherence. Biological mothers, other caregivers, and health care providers had an influenc e on how the adolescents accepted and integrated information about their disease into thei r lives. Biological mothers were more reticent about disclosing the HIV diagnos is to young children, but their faith in the importance and effectiveness of antiretrovi ral therapy seemed to have a greater impact on their childrens adherence than thei r own adherence to medications did. Other caregivers were a bit more likely to discl ose the HIV diagnosis to children at a younger age than biological mothers were. The c urrent stability of the family and their adaptation to HIV appeared to have a great er influence on the childrens disease management than did past instability and loss of parents to HI V. The rating of the patient-provider relationship did not differ considerably betwe en adolescents with optimum adherence and those with only fair adherence, though the adolescents with the most adherence problems did rate this relationship lower than t he other adolescents did. The interviews with adolescents and clinicians did reveal, however, that adolescents construed the communication and interaction styles of providers differently from the way that providers described them. Among the provide rs themselves, the styles were quite variable, though the impact of any individual s tyle on a patients disease management and health outcomes was not explored in this study.
174 Overall, the adolescents had only a basic understanding of the medical aspects of HIV, including the effects of adherence, the ramifications of non-adherence, t he meaning of HIV-related lab measures, such as viral load and CD4 count, and the meaning and implications of viral resistance to antiretroviral drugs. The less they knew and were invested in the importance of their disease management behaviors, the less consiste nt they seemed to be in their medication adherence. Most of the adolescents were extremely reticent about sharing their HI V status with peers, and of those who were sexually active, disclosure and use of condoms was not practiced every time. The implications of these results, for perinatally infected adolescents and their families, as well as for the clinical and social service providers who are par t of the Florida Family AIDS Network, will be discussed in the next two chapters.
175 CHAPTER 5: DISCUSSION Successful management of human immunodeficiency virus (HIV) disease is directly linked to optimum adherence to ones antiretroviral drug regimen. The development and availability of different classes of antiretroviral drugs, a s well as prescribed therapy that usually involves several different drugs taken in com bination, have transformed this disease into a chronic, manageable condition. The possibilit y of long-term survival and improved, stable health outcomes, however, depends on rigorous adherence practice. The level of adherence to therapy also affects the continued sensitivity of the virus to the drugs, that is, the likelihood of viral resistance t o the drugs. HIV disease management also has public health implications insofar as it involve s the prevention of virus transmission to others, most often through sexual activity. The risk of sexual transmission of HIV is particularly affected by sexual pra ctices, and also by the viral load, or the number of copies of HIV per milliliter of blood (Quinn et al. 2000). Sexual behavior and viral loads represent the many social and medical aspects of HIV disease management, aspects which interact with each other and demand a comprehensive examination. At the same time, disease management is an individua l endeavor, with individual variations, so a focused, qualitative analysis holds promise of addressing and elucidating the personal, social, cultural, and medical constit uents of this particular groups HIV disease management (Sankar et al. 2006; Collingrid ge and Gantt 2008).
176 HIV disease management owes its complexity not just to its individual and public health effects, but also to the indirect or more distal factors that complicat e its execution. These factors are numerous, diverse, and complex. The preceding chapters have be en an attempt to present some of these factors from the perspective of adolescent s with perinatally acquired HIV disease. In this chapter, I will discuss perinatal ly infected adolescents experience with adherence to antiretroviral therapy, the m ainstay of HIV disease management, and the significance of the disclosure process in sustaining successful management of HIV from childhood into adolescence and young adulthood. The discussion will be embedded in the medical ecological framework, in which hea lth and disease are informed by the perceptions and social relations of patient, hea ler, family, and community [and] [i]nsults can originate from organic, inorganic, and all aspects of the cultural environment (Armelagos et al. 1990:358). The major themes to emerge from the findings of this research provide support for the medical ecological perspective on the chronic disease experience, and for the saliency of spheres of social, cultural, and medical influence which make up the adolescent s lifeworld. These themes include the factors that most significantly as sociated with the adolescents adherence to therapy and overall HIV disease management. The y are: 1) early disclosure of HIV diagnosis and caregiver attitudes and support 2) the dominance of HIV disease as a socially-felt affliction over a medicall yexperienced condition 3) the chronic illness identity and experience 4) the process and meaning of disclosure to friends
177 5) biomedical knowledge and understanding of HIV and its personal and public health implications 6) stigma as the underlying theme Each of these themes will be discussed, followed by sections on additional issues re lated to adherence that were not addressed in this study and unexpected findings among the adolescents that did not support the hypotheses. Themes Disclosure of the HIV Diagnosis to the Child and Caregiver Attitudes A child with perinatally acquired HIV cannot really begin growing up wi th and managing HIV until he or she knows the name of the bug in your blood or the bad guys in the blood, as the clinicians described HIV to their younger patients. Na ming the bug begins the process of owning their disease and gaining control over it. Eight of the nine participants in this study who were told they had HIV when they were young children, age 10 or younger, were either optimally adherent to their medicati ons, as evidenced by consistently undetectable viral loads, or were practicing good a dherence, with alternating undetectable and low viral loads. Only one adolescent who was disclosed to early had problems taking his medicines and was taken off the medica tions in order to prevent the development of resistance. Conversely, among the eight adolescents who were disclosed to later, at age 11 or older, all but two had detecta ble and markedly fluctuating viral loads, indicating some problems with adherence. Findings from studies that looked at psychological and emotional issues following disclosure have been inconsistent, though some positive effects of disclosure have bee n found (Butler et al. 2009). Among my study participants, the most positive effect, that is,
178 successful adaptation to HIV in their lives, seems to be affected not just by di sclosure, but by early disclosure. While no tools to measure quality of life indicators wer e used in this study, the interviews reflected more acceptance of their status a mong those disclosed to earlier and excellent or very good adherence behavior. These adolescents gr ew up knowing about their HIV even before they fully understood it, whereas those who learn ed the diagnosis later, already knew about HIV (and likely were aware of its ne gative connotations) and experienced distress and dismay. As with adults who are diagnosed with a chronic illness, adolescents who learn their HIV diagnosis later in ado lescence seem to experience the diagnosis as a biographical disruption (Bury 1982), wherea s those disclosed to earlier adapted early to the knowledge and to the disease with lit tle disruption. Diana, disclosed to at age 15, said it was a shocker and was angry with her mother, and then she said her life went downhill. Sean, who learned his diagnosis at about 16, was really, really sad and still, after a few years, says, i t still get to me, I still be hurt. I still be hurt that I got it. Stephanie said, I didnt want to believe it when the doctor told her, at age 17, that she had HIV. Valerie, on the other hand, wasnt really sad or anything, when she learned about her HIV at age seven or eight. Jeff, age 16, said, Im kind of used to it now. Ive been growing into it, having known his diagnosis since he was five or six. Mark expressed the advantage of early disclosure: I di dnt really know what it was at the time so I didnt really get all dramatic about it. All of the adolescents who learned their diagnosis earlier seem to have accepted it into t heir lives. Only Nina expressed some wistfulness when she said, I got a life thats w onderful but
179 Im not living the life that everybody else is kind of living, like taking medici nes every day. The adaptation of the participants who were disclosed to earlier also seem s to have been influenced by their caregivers attitude to HIV. As one of the clinici ans had argued, the patients who had the fewest problems with adherence were those who had not just loving, stable families, but open families. The caregivers or parents (th ree of whom were in the mothers focus group and two of whom had some input at the time of their childs interview) of half of the study participants who were disclosed to e arlier and managed their disease better generally did not treat HIV as a secret, nor were they ashamed of it. The caregivers of the other participants who were disclosed to ea rlier did not have input in the study, but all except Keith were adjusted to HIV in their lives and did not convey any discomfort in their discourse. Lucys mother was involved in HIV advocacy and very open about her HIV, and this may have had an impact on Lucy, who, despite being disclosed to quite late, was nonetheless very adherent and made room for her medicines in the routine of her everyday life. Parents who delay disclosure on the other hand, may have their own problems coping with their diagnosis (Wilfert et al. 1999), and so are not ready to face the inevitable explanations that will come with disclosure to their children (Lester et al. 2002; Ledlie 1999). The openness of the fa mily about HIV means that there is greater acceptance and less shame about HIV, a nd this may be a key factor in preventing the childs developing and harboring a sense of shame a bout his or her own HIV. Conducting the research from the perspective of medical ecology situated the adolescents in the social and medical contexts in which they experience their HI V, and
180 highlighted the family context as the setting for health practice (Novilla et al. 2006). It was clear that the families and primary caregivers of the adolescent par ticipants had an influence on the social and medical aspects of HIV the meanings of HIV adopted by the adolescents, their adjustment to and engagement in HIV disease management, and t heir adherence to medications and other health-related behaviors. The parents or other caregivers who approach HIV without fear or shame, and discuss it openly with their children, afford these children with the opportunity to learn, accept, and engage in t heir HIV care. These caregivers are also apt to disclose the diagnosis earlie r in the childs life. Studies have shown that good adherence is highly correlated to complete di sclosure to the child by his or her caregiver (Shet and Kumarasamy 2008; Bikaako-Kajur a et al. 2006). The accommodation of HIV into the family dynamic is often a complicated process. In particular, families with an HIV-infected child who are heade d by the biological mother or parents necessarily have two or more HIV-infected me mbers, and often also uninfected members. The disclosure process itself can be wrought with anxiety, raising questions about how and when to disclose each persons status. In thi s research study, two participants in the mothers focus group were known to have both infected and uninfected children. One mother revealed the difficulty she had in acc epting her own HIV, her fear of disclosure to her children, and her conclusion in retrospect tha t earlier disclosure to her children would have been better for them. The other mother in the group admitted that she had not disclosed her and her youngest childs HIV status to her four older children.
181 The attitudes of biological mothers toward their own HIV disease, their adher ence to medications, and their health care also may have effects on how their childre n face their own disease and its management (Cunningham et al. 2006). We have seen that Donna, one of the mothers in the focus group, opposed much about the biomedical system of care and was extremely dissatisfied with the interactions s he experienced with biomedical practitioners. There is some evidence that beliefs about biomedica l health care and the quality of the patient-provider relationship have an impact on patients health outcomes, adherence to medications, and retention in health care (Beer et a l. 2009; Beach et al. 2006). Indeed, Donna did not take antiretroviral drugs, and used herbal medicine instead. She did intimate that her daughter was continuing her antire troviral therapy, but was not happy about the prospect of her daughters continuing these medications indefinitely (Shah 2007). Another mother, Teresa, was not very adherent t o her own medication regimen, but was very attentive to her childs adherence. If the mother embraced the efficacy of antiretroviral medications, she was more apt to assist her child in adherence behavior, though she herself might not be very adherent. Caregivers and parents need support, both in their own adjustment and in guiding their childs HIV management (Steele et al. 2007). Disclosure to children som etimes requires a team effort of the caregiver and clinical network (Waugh 2003; Gerson et al. 2001), as the clinicians in this study explained, and biological and unrelated caregi vers alike need to be instructed on and understand the clinical implications of adherence a nd non-adherence to medications. In addition, the responsibility for childrens medicat ions must be well delineated (Marhefka et al. 2008; Martin et al. 2007), so that there is no confusion about who in the household needs to remember each dose. Assistance from
182 another adult may also help caregivers in ensuring optimum adherence in the child (Reddington 2000). The findings from this study also showed that the openness of the family or caregivers about HIV and their serious involvement in their childrens HIV trea tment are key elements in the successful adherence of the adolescents. It did not matter whether the caregiver was a biological mother or adoptive mother, whether the adolescents had l ost parents to HIV, or if they were born into unstable situations. What mattered was the active involvement of the caregiver and the acceptance of HIV as a part of thei r lives. Approaching HIV disclosure early in the childs life allows the caregiv ers to begin a gradual process of increasingly detailed, age-appropriate explana tions (Lipson 93), so that by the age of 10 or 11, the child has been adequately prepared to understand and accept the HIV diagnosis. This process, followed by early disclosure, allow s for a longer period of living with the knowledge, so that by the time the children reach puberty, are developing their identity, and are exploring their sexuality, HIV ha s become more habit than hang-up in their lived experience. In one study, health care providers favored six years of age for the commenc ement of health discussions, because children can understand basic concepts of health a nd disease, and age ten for introducing HIV into the discussions, an age when more complicated explanations are possible (Myer et al. 2006). The reticence of parent s and other caregivers, however, to disclose to the child early has been shown in my study a nd in others to be due to their belief that children cannot understand and handle the information, but also because the disclosure of a childs HIV necessarily expose s the familys HIV history and the sometimes difficult circumstances surroundi ng its
183 contraction (Lesch et al. 2007; Wiener et al. 2007). The childs vulnerability to diffic ult truths, as well as the experience of health and illness, are socially construc ted notions (Christensen 2000) that, in some families, relegate the child to a silent and dependent status, rather than acknowledge the competency and awareness that children demons trate as social actors in their own right (Prout 2000). It is this legacy of shame, guilt, and secrecy that differentiates perin atal HIV from other childhood illnesses (Wiener et al. 2007; Lester et al. 2002; Lipson 1994), and makes disclosure of HIV to a child an experience wrought with psychosocial cha llenges. However, the capacity of the child to accept and understand his illness has been studie d and recognized in the cases of other childhood illnesses (Lester et al. 2002; Bibace and Walsh 1980), and there is no reason, barring individual social and developmental contingencies, to think that children with HIV cannot do the same, as my study has shown. In fact, this research study was approached from the perspective of the adolescent (and the young child) as a capable social actor experiencing HI V in a culture of adolescence that is separate from the culture of adults. Because many p erinatally infected individuals are now living with HIV well into their twenties, the necess ity of learning about, accepting, and preparing to manage their HIV must be considered not only an individual and public health need, but also a right (Corbin 2008; Lesch et al. 2007; Pfaff 2004) that it is incumbent upon the adult culture parents, teachers, health care providers to respect and grant. Equipping children and adolescents with knowledge is a key ingredient in their development of power over their disease and thus over their disease management (Fisher et al. 2006). Especially for the perinatally infected, this feeling of power is crucial,
184 because they have had no control over getting the disease and they also may hav e lost a parent or sibling to HIV, which may leave them feeling powerless and hopeless about their own futures (Steele et al. 2007). One of the ways to begin this process of empowerment is instructing young children about how to take their pills and clearl y delineating the roles and responsibilities of child and caregiver (Marhefka e t al. 2008). Katie, who was disclosed to very early in her life, nonetheless, did not take full responsibility for her medicines until she was eighteen. She believed that beginnin g the process at about the age of eight, and teaching children about dosage and showing them how to read labels, would make remembering to take the medicines and assuming full responsibility much easier as they grew into adolescence and adulthood. She said, if I would have started when I was maybe like eight years old, when I really grasped the understanding about it, it would have been a lot easier [L]ittle kids arent going to understand everything, but you teach them or tell them what theyre capable of understanding and then they get kind of used to it. Now that children have a very good chance at an extended future, this cultivati on of power, which seems to have been taken from them right at birth, is an even more urgent need for maintaining their health and protecting their sexual partners. It is also important for these children to begin the process of accepting and gaining power over their HIV, because the sting of social stigma that they will inevitably fa ce, even if it is just listening to others talk about AIDS, as the study participants shared, may b e lessened if they have been cultivating a sense of strength and acceptance about their HIV from early in their lives. We have seen that HIV management is sometimes an annoyance, and adolescents especially want to be independent, in control, and perceived as normal. All of the
185 participants expressed negative aspects of having HIV, whether disclos ed to early or late. Vanessa mentioned the hassle of medication and Lucy said she wondered about the possible progression of her disease. However, about two-thirds of the adolescent s remarked on the difficulties that HIV could cause in social interactions, and t his makes it all the more critical that they begin to deal with these issues before they become involved in social relationships. It is for this reason that the American Academy of Pediatrics (Wilfert et al. 1999) suggests disclosing to school-age children. Social interacti on at young ages, for example, requires that HIV-positive children be aware of the da nger of blood should they get hurt. However, for adolescents, including this studys participants social interaction at older ages involves establishing trust with peers and becoming sexually active, and HIV can complicate these developments. Dominance of HIV as Social Phenomenon The disclosure of the HIV diagnosis to children or adolescents transforms t he unknown secret of their HIV status into HIV as reality (Mellins et al. 200 2:112). How they make sense of this information, that is, the meanings they construct for t heir disease, depend on the dynamic social and cultural contexts of their lived experience (Fife 1994: 315; Thorne 1999:400). For HIV and AIDS, these contexts include stigma, shame, and secrecy, which become more or less salient as the child ages and his or her soc ial world changes. His or her cultural values and interactions will also dictate whet her and to what degree these aspects become a part of the child or adolescents HIV experie nce. As Zo and Sean made clear, sharing their status with romantic partners was not an option a t present, and even Paula, who was quite comfortable with her status, categorica lly denied it when confronted by school mates because she was knowledgeable about HIV/AIDS.
186 The participants in this research study embraced both social and medical meanings of their HIV, though the interviews revealed that they highlighted the social course of the disease and the social experience of HIV in their lives (Kle inman et al. 1995:1323, 1325). All but one of the adolescents in this study spoke much more about the social ramifications of HIV than the medical effects. Lucy was the only participant who brought up the medical aspects more than the social effects. She brought up the issues of taking or forgetting her medicine, of wanting to remain undetectable, a nd of thinking, do I want to live to see another day. So I stop and I drop everything Im doing and take it. Virtually all of the others pointed out the difficulties of telling ot her people, including romantic partners, the reactions of others who learn about their diagnosis, t he ignorance of others about HIV, and the stigmatizing reactions of people who lear ned their diagnosis. Even though Lucy was disclosed to late and had constructed the most salient medical meaning of HIV disease, in general, it was the adolescents who we re disclosed to early in their lives who saw the disease in somewhat more medical terms (i n addition to social terms) than did their late-disclosed counterparts. They knew a little more about their medicines, about their lab tests, and were more adherent to their medicines Those disclosed to later experienced their HIV and defined it in more emotional terms and by its effects on their social interactions. For some, like Zoe, Diana, Angela, and S tephanie, there was a sense of denial or separation from the disease, as evidenced by s topping their medications and preferring to ignore the disease in family and peer interactions Whereas the adolescents disclosed to early experienced control of their disease throug h acceptance and adherence, the others took control by opposite tactics, denial and refusal.
187 The medical versus social meaning of HIV has implications for whether and how much these adolescents exercise agency in their experience and managemen t of HIV. Those who adopted a medical, in addition to a social, meaning of HIV understood, to a greater degree than those who did not, the clinical aspects of the disease, the ef fects of medication and medication adherence, and the importance of assuming responsibilit y for beneficial health-related behaviors. It appears that the participants who were disclosed to early adopted this more medical perspective of HIV before the experience s of adolescence social and developmental complexities, such as the formation of the a dult self and identity, exploration of ones sexuality, and the onset of romantic and sexual relationships began. While social meanings of HIV were constructed by all of the adolescents, if HIV as medical construct anteceded or coincided with the social m eaning, it seemed to provide the adolescents with a foundation to support their ongoing involvement and engagement in their health care and treatment (Gerson et al. 2001). I t may also affect how these adolescents approach the social and cultural attitudes and meanings that they face and develop later in life, since they have approached the disease first as a medical reality and subsequently or coincidentally as a social one. Attaching a medical meaning to HIV and engaging early in HIV care and treatment may aid in the childs development of an adolescent and adult identity that affords rather than denies a space for HIV. These adolescents are then likel y to exhibit problem-centered coping (LeBlanc et al 2003), having reached an acceptance of their HIV as a part of their developing selves (Hosek et al. 2002). Those who learn of their HIV as older children or as adolescents appear to use a more emotion-based str ategy (LeBlanc et al 2003), which has been shown among the study participants to result in
188 denial or avoidance, reactions that can have negative consequences on both physical and mental health (Dahlbeck and Lightsey 2008). It is notable that one of this studys clinician interviewees emphasized the danger in an adolescents adopting a disease identity: So with an adolescent you dont want them to develop a disease identity but you want to empower them to learn to fight it. So sometimes youve got to let them go to the rocky times as youre working towards, you know, let them separate themselves from the disease and thats what theyre doing when these perinatal kids stop taking the medication. [Ed] In the next sentence, however, he acknowledged the detriment involved in this kind of behavior: Theyre trying to separate themselves from the disease and you dont want that, because then they become really awful adult patients. The psychological underpinnings of adolescent identity formation are beyond the purview of this analysis but from an anthropological perspective, there is room for the child and, later, the adolescent to engage in positive symbolic interactions with the immediate act ors in his or her medical ecological niche peers, family, community, and health care provide rs. These interactions, especially when initiated early in the childs life, ca n produce new meanings of HIV that contest the flawed identity (Hosek et al. 2002:356) engender ed by social stigma. Among the study participants, those who learned their diagnosi s early and had caregivers who normalized the childs condition succeeded in incorporating thei r HIV and its treatment into their developing selves and reframing the ontology of suffering (Kleinman et al. 1995:1321). The meanings construed and identities realized gradually throughout these childrens lives work in tandem to influence the agency they exercise in the mana gement of their HIV. I have argued that a precedent medical meaning, developed early in the
189 childs life, accompanied by the development of a normalized illness identity, produce a more engaged individual, whose agency, the socioculturally mediated capacity to act (Ahearn 2001:112), results in consistent behavior, feelings of power, and responsibility. The age at disclosure, parental attitudes and beliefs, the role given to stigma in creating sickness stories (Kleinman et al. 1995:1321), the medical efforts to engage chil dren, to name the most important factors, have an impact on whether an adolescent has the capacity to take control of his or her disease and be an active collaborator in his or he r treatment and care. HIV as Chronic Disease: Meaning, Identity, and Agency Adolescence is a stage during which individuals want to fit in, feel normal, and exert a measure of independence. The presence of HIV threatens all three of t hese objectives. Accommodation to the rigors of health care and medication adherence doe s not mean that these young people do not grow weary of the constant reminders and inconvenience of their illness (Belzer et al. 1999). Health care and medication fat igue are a danger among these adolescents, and as we have seen, they sometimes dec ide to stop taking their medications (Pontali 2005). The early disclosure of HIV holds the promis e of the childs gaining a sense of normalcy about HIV early on, and certainly by t he time they reach adolescence. The earlier the explanation of HIV and its treatment begins, the sooner the child can begin to take control of the condition and its ongoing exigencies, thereby facilitating habituation. The more habitual the HIV care and treatme nt become, the less it will interfere with the normal adolescent culture that he or she sha res with peers. HIV must remain an important part of the child or adolescents experienc e, but at
190 the same time, the familiarity with and proficiency at the daily heal th-related behaviors make it less prominent in that lived experience. Disease management, especially adherence, is a challenging endeavor f or all perinatally infected adolescents, even those who learned their diagnosis early. It presupposes a measure of control and skill. The adolescents opportunities to gain control and skill, and then to apply that control and skill to addressing the medical needs of his or her HIV disease, are limited by the medical, social, and cultural resources, t hat is, the medical ecology in which his or her lived experience is situated (Armelagos et a l. 1990). These resources are embedded in concentric circles of socioecological influence (Steele et al. 2007:59). The perinatally infected child is surrounded first by family, some of whom may also be living with HIV or may have died as a result of it. Beyond the fami ly, he or she has interaction with friends, school mates, teachers, neighbors, and others in t he immediate community. The next influential niche is the health care system and t he practitioners who care for the child or adolescent (Steele et al. 2007). The capacity to act is a phenomenon that the above social actors around them have been ambivalent about facilitating or accepting in the perinatally infect ed adolescents, and they have at times had a negative influence on whether or how these young people act in the face of HIV (Pontali 2005). Dianas mother, for example, insisted on preparing her daughters medications, even though Diana was 19, but at the same time harbored negative feelings about the safety and efficacy of the m edications. Others in the adolescents environment may either promote agency based on secrec y, shame, and difficulty in accepting the disease as normal, or they fail to allow them agency at all. Their peers have been shown to be especially influential in this regard.
191 More than one of the participants pointed out the ignorant or mocking comments from school mates. The medical ecological environment is not always a sympathet ic one, from the family members who demand secrecy, to the peer network that mocks and exclude s, to the social community that stigmatizes, to the health care practitioners w ho are both reproachful and overprotective. Among the adolescents in this study, we have evidenc e of each of these pitfalls or lack of support to successful disease management. The interpretation of perinatal adolescents HIV disease as a social expe rience more than a medical one may seem at first glance to be counterintuitive, sinc e they have been ensconced in the health care system since they were very young, and have been taking medicines throughout their lives. However, as Hunt and Arar have found, patients, out of necessity, modify and adapt long-term illness understandings and se lfcare measures when applying them within the constraints of daily life (Hu nt and Arar 2001:351). All of the participants in this study knew, to greater and lesser degrees, tha t taking their medications faithfully was essential, that it would keep their vira l load and T cells at optimum levels, and would keep them healthy, yet several of them had, at one time, refused to take them. Two participants, Keith and Sean, were non-adherent to a point that it was considered better to stop their medications altogether. Other s were sporadically less than optimally adherent, and even those who were always or almos t always adherent confessed to feeling sick and tired of taking the medications. I was surprised to hear Jeff, who had integrated his regimen very well into his daily routine admit that he frequently thought about how sick and tired of taking the medicines he was The less dominant medical aspect of HIV owes some of its effect to the fact that HIV has become a disease in which people can live for long stretches of time as healthy
192 individuals. The traditional sick role (Crossley 1998) is no longer emphasized, and being HIV-positive has now become a kind of liminal state (Little et al. 1998). For the adolescents, being healthy and having none of the visible physical signs of disease give s them the chance to be normal, but it also makes them feel the urgency of their medic al treatment less. The desire for independence combined with medication fatigue, within an environment hostile to HIV, can also lead adolescents to rebel against adherence. The chronic nature of the disease can seem like a black hole that, at some point, can drain them of their energy and conscientiousness. The lack of control due to HIV in their lives is another element that weakens their resolve over time. The perinatally inf ected adolescents, in contrast to behaviorally infected adolescents and adults, had no control over how they got the disease, no control over when and how they were disclosed to, and no control over deciding when to begin treatment. There is evidence that being able to take responsibility for contracting HIV (as in those behaviorally infecte d), even if it is tinged with guilt, allows individuals to take control of and responsibility for their di sease and its treatment (Plattner and Meiring 2006). Yet, some of the adolescents in thi s study seemed to embrace their blamelessness and accept their status and their mana gement responsibility with more equanimity because of it. In general, the early disclosure to children seems to be a key element in this type of acceptance, and the subsequent assumption of responsibility for their disease. Paula, at 13, had already internal ized her responsibility for taking her medications. Without hesitation, Jeff rated both the ease and the importance of taking his medicines very high.
193 Some of the adolescents in this study seemed to suffer because of this lack of control, feeling a sense of unfairness, which affected them even now as adolesc ents and young adults. They had a more difficult time accepting the circumstances of the disease, including engaging in their ongoing treatment. Keith thought it was unfair that he was the only infected child in his family; he had three uninfected siblings, and he felt like an oddball. Olivia did not say it was unfair, but her mother alluded to Olivias feeling that she was the only child her age who had this disease. Stephanie found it hard to accept her HIV at first because she did not know how she could have gotten it; her father did not have HIV, and she never knew her mother. Disclosure to Peers All of the participants shied away from sharing their status with friends a nd school mates. This was not only a personal choice but a socially constructed necessit y, as the adolescents overwhelmingly agreed that there were social risks invol ved in sharing their status or even demonstrating an understanding of HIV and AIDS. Specific a ttitudes about keeping ones business a secret also seemed to come into play. However, the adolescents disclosed to earlier were overall a bit more open about their stat us with friends. Peer Relations In this research study, more than half of the adolescents disclosed their HIV st atus to no one or to one friend. They were generally not inclined to disclose their status because they felt it was not anyones business and because they anticipate d a negative reaction. Many also described their school mates ridiculing or uninformed com ments about HIV when the subject arose. These results indicate that these adolescent s had very
194 few people with whom they could be open about their disease experience (Michaud et a l. 2009) They also had not had much interaction with other HIV-positive adolescents, and some expressed little interest in meeting with other HIV-positive adolesc ents. The decision to keep their HIV status a secret, in addition to the reasons above, may also be made because the disease has no visible effects and the adolescents can pass as nor mal, healthy individuals (Goffman 1963; Michaud et al. 2009). While peer support and openness about HIV status between friends was hypothesized to have an impact on adherence, and more of the adherent youth had disclosed to more friends than the less adherent individuals, the association was not consistent across the adolescent sample in this study. It is more likely that t he adolescents who learned their HIV diagnosis at an early age adapted sooner and bette r to the disease in their lives, and thus were both more able to adhere well to their thera py and more comfortable disclosing their status to friends (Wiener and Battles 2006) The highly personal and potentially stigmatizing nature of HIV, however, was power ful enough that, even among some of the very adherent and adjusted adolescents, there was little disclosure. Lucy is the prime example of this; she was extremely adherent, yet insisted that she would disclose to no one outside her family. It has also been theorized that the ability to share the difficult experience of HIV disease helps the individual to make cognitive adjustments that allow HIV to occupy a place in his or her existing meaning structures (Sherman et al. 2000:239), and improve s their health and behavior (Abel et al. 2004). In addition, Sherman et al. found that disclosure to friends resulted in an increase in the HIV-positive individuals CD 4 level (Sherman et al. 2000). If disclosure to friends does indeed facilitate the accept ance of
195 HIV into the adolescent sense of self, is a part of the culture of childhood and adolescence (Sherman et al. 2000:240), and can improve health, then the cultural attitudes dictating secrecy, shading the truth, and lying about HIV can prevent significant advantages to the adolescents physical and psychosocial health. Sexual Relationships The lack of peer support and interaction with other HIV-positive adolescents indicates that these adolescents are trying to keep their HIV disease in t he background of their social relationships. They do not talk about their disease much even to the frie nds who are aware of it. While this may be part of the adolescent developmental sta ge that includes fitting in and being normal, the silence around their HIV status does rais e concerns about their ability and willingness to discuss it with romantic and sexua l partners. All of the adolescents knew that they should disclose their status to a boy friend or girlfriend, and they were aware of the need for condoms during sexual intercourse yet the study shows that the adolescents description of future sexual behavior and wha t will actually occur or has already happened are not always the same. Of the seve n sexually active adolescents in this study, two admitted not disclosing their status to at le ast one partner, and one said that he would not disclose to a partner until they had been together for a long time. This suggests the looming challenge of disclosing ones sta tus to a sexual partner. As a study by Wiener and Battles has shown, adolescents who discl osed their status to more people were more likely to disclose to sexual partners, and thos e who scored higher in self-competence in relationships disclosed to more peers (Wiener and Battles 2006). While my study did not measure self-competence, it did show that many
196 of the adolescents were not well prepared, if at all, by their caregivers or clinical providers to disclose their status to peers. Over half of the study participants mentioned that one of the worst things about having HIV was disclosure to others or the risk of transmission to a partner or chil dren, both of which gain salience in the sexual relationship. Despite their knowledge of the importance of disclosure and safer sex, these adolescents have or anticipate havi ng some difficulty with these behaviors in their sexual relationships. It seems tha t their HIV disease is experienced as biographical disruption (Bury 1982) at this point, where sexual relationships become part of their lives, even for those who were disclosed to e arly in life and appeared not to have felt this disruption previously. As the literature and the clinicians in this study have articulated ( DAngelo et al. 2001), the failure to disclose HIV status to casual partners is especially likely. Sex without condoms is also common (Dodds et al. 2003). The most disturbing illustration of unsatisfactory disease management among the adolescents in this study was the combination of medication interruption and unsafe sexual activity. Both Keith and Sean had their regimens stopped in order to protect the m from the viral resistance that their poor adherence was likely to cause. The ir recent viral load results showed that they were not suppressing the virus completely during their treatment interruption. This is not surprising, but it does mean that their infectiousne ss, that is, the likelihood of transmitting HIV to a sexual partner, was elevated. T he interview with Keith showed that during this time, he had had unprotected sexual intercourse with his girlfriend, because she had one past pregnancy and was curre ntly pregnant. Sean was also sexually active, and did not disclose his status to his c urrent
197 partner, though he said that he had used condoms. The decisions of the clinical provider to stop therapy and the decisions of the young men to engage in risky sexual activit y risk result in an increased risk of transmission of HIV to their partners. Both cases are problematic. In Keiths case, his girlfriend was aware of his HIV stat us, but their sexual activity had been unprotected. In Seans case, condoms were used, but his partner was unaware of his HIV status. The decision to interrupt an adolescents antiretroviral therapy should be re visited when a clinician is concerned that the adolescent is or will be engaging in sexua l activity, especially unprotected sex. Biomedical Implications and Provider-Patient Relationships As argued above, many of the adolescents who participated in this research stud y saw the meaning of their illness in social terms more than in medical term s. The result is that they have not learned and internalized, 1) the effects of the virus if it become s detectable or remains undetectable, 2) the meaning of adherence and how it can af fect their health and their survival, and 3) the ramifications of their HIV disease mana gement for their sexual partners. They are not approaching HIV disease as a medical circumstance that they cope with, but rather as a social problem that they bemoa n (LeBlanc et al. 2003). They have not succeeded in making their disease management a routine, but rather attend to it when it is convenient. The fact that many forget, a re too tired, or are too busy to take their medicines, are in a hurry, or dont have their medic ines with them, is evidence of a failure to make taking medicine a habit. In addition, fe w in this study seemed to use reminder aids, such as pill boxes or alarms. Furthermore if they did remember their medications, they still might not take them when they were in the
198 presence of friends. The more successful adolescents seemed to be more habituate d to taking their pills, and would also, if necessary, find discreet ways to take them when among friends. In this study, the adolescents who were able to remember, make time for, and fit in their medications, despite busy and changing schedules, social relationships in w hich disclosure had not occurred, and treatment fatigue, also had a somewhat more detail ed understanding of the medical aspects of HIV and antiretroviral therapy. Ye t all of the adolescents had gaps in their understanding of and ability to explain the clinical indicators of their health, their medicines names, dosages and schedules, the defini tion of resistance, the relationship between adherence and clinical indicators an d between adherence and resistance, and the effects of adherence, viral load, and resis tant virus on transmission of HIV to sexual partners. Though most of them had taken, been given, or been expected to assume responsibility for taking their medicines, most had not i ncreased their knowledge along with that adherence responsibility (Martin et al. 2007). It is this deficit in a medical conceptualization and understanding of HIV and its ramifications that is one of the most important findings of this study. The adoles cents notions and actions regarding HIV disease, which are based on social, cultural, and medical notions and interactions within their environment, have a significant impact o n the natural history of the human immunodeficiency virus. The level and consequent infectiousness of HIV, as it responds to medications, mutates during their absence, multiplies or decreases, depends on the individuals strict adherence to medications and attention to medical details, and has the potential to affect the individuals sexual partners (Wiener et al. 2007).
199 From both an individual medical perspective and a public health perspective, adherence to antiretroviral medications is crucial. Optimum adherence is ne cessary to suppress and maintain the virus at undetectable levels and to improve immune function. Transmission of HIV to sexual partners is rare among infected persons whose vira l load is at very low (less than 1500 copies per milliliter) or undetectable levels (Quinn et a l. 2000). Equally important is the effect of optimum adherence on reducing the chance s of development of resistant virus. If resistance to medications develops, the infec ted individual will be obligated to change regimens and his or her choices of antiretr oviral drugs are reduced. Moreover, if transmission of resistant virus occurs during sexua l activity (Kourrouski and Lima 2009), then the recipient will enter treatment wi th a reduced range of efficacious antiretroviral drugs. Thus, the consequences of s uboptimum adherence are felt at the individual level but extend to the epidemiology of HIV and the publics health. The adolescents situated construal of and response to their HIV results in a model of disease management that is apt to differ significantly from the biom edical model to which their clinicians subscribe. Among the study participants, the biomedica l details of HIV and its management are understood, but the details are abbreviated. I t is to be expected that a patients knowledge is limited in comparison to the providers, but these limitations can become problematic for the adolescent and young adult H IVinfected individuals when they are assuming responsibility for their therap y and becoming sexually active. At the same time, the social and cultural dimensions of an adolescents HIV experience, which dictate how they define HIV and develop strategies for ma naging it,
200 seem to be understood only superficially by the practitioner who provides care and treatment. More importantly, the provider may be unable or unwilling to take this experience into account when establishing a patients plan of care. All of the provide rs in this study said that they discussed their patients lives beyond the clinic, and the y tried to accommodate specific issues in their prescription of treatment. For exampl e, regimens were changed to twice daily dosages so that patients would not have to take medicine at school or risk forgetting them during the day. However, the primary goal of the m edical provider was the health of the patient, as evidenced by satisfactory viral load a nd CD4 levels, and adherence to antiretroviral therapy to insure that health. The distinction of HIV disease from many other chronic diseases lies in its infectiousness during symptom-free periods. In addition, the antiretroviral drugs are very unforgiving (Fisher et al. 2006) if not adhered to strictly. It is this part of the e xplanatory model of HIV (Kleinman 1978) the pathophysiology, course, and treatment that are approached differently by clinician and patient (Hunt and Arar 2001:349). In address ing these issues, disease management may be better perceived as a process d eveloped by means of a provider-patient partnership, rather than as an ideology, in terms of i mposed professional expectations (Trostle 2000:41). Stigma: An Underlying Theme The first five themes discussed above all share one construct: the stigma of H IV and AIDS. Disclosure, caregiver behavior, social attitudes, peer relations, a nd sexual activity were shaped by many elements of the adolescents medical e cological context, but all shared the influence of stigma in making the adolescents lived experienc e of HIV challenging. Only one adolescent mentioned the word stigma during our conversati on,
201 and the word was never used during the mothers focus group. A few of the adolescents who were asked if they knew what stigma meant said they did not. Yet, every participants descriptions of their behaviors and attitudes or their peers behavi ors or attitudes reflected the underlying power of stigma that surrounds HIV and A IDS. As this study has shown, understanding and practicing adherence to therapy is facilita ted or interrupted by a range of social, cultural, and medical contingencies. Underl ying the interactions within these contexts is the continuing menace of HIV/AIDS s tigma. In addition to the societal sources of stigma, in the cultural niche of adolescence, the presence of any differentiating characteristic can be cause for ridic ule, as Olivia insisted in her interview. She said it did not matter whether it was HIV or asthma, the kids woul d pick on an affected child. Almost every adolescent recounted an instance of stigm a comments by school mates, a boyfriend, a relative which led them to deny their s tatus, lie to their friends, or be ostracized by a relative. The majority of the pa rticipants had decided that their HIV status was no ones business or best kept a secret, because th ey knew there would be negative reactions. Thus, the adolescent experience of HIV/AID S evokes particularly harsh responses of us versus them (Devine et al. 1999; Gi lmore and Somerville 1994) that plague the AIDS epidemic to this day, and explain the very common decision to keep ones HIV status a secret. The mothers focus group discussion also hinted at the presence of stigma, when the mothers discussed delaying disclosure of HIV status to their children, n ot disclosing their own status to family members, and receiving negative reactions from fa mily members who learned of the diagnosis. Rita has never spoken to her in-laws since her husbands illness and death, and Teresa has not disclosed to her four older children. The
202 clinicians, too, described patients and parents who kept their HIV a secret from fa mily, friends, and sexual partners. Carol recounted one poignant example which illustrate s the impact of the social context and the ramifications of stigma and secrecy. The adol escent patient and her mother lived with the mothers parents but had not disclosed their status to the parents: the child lives with the mom and the moms parents and theyve lived there the whole time Ive worked here, and the grandparents dont know about their daughter or their granddaughter. So Im thinking in my mind, how is she [the child] ever going to be disclosed? I mean, its like a mega-secret. I dont even know how you live, it gives me like pain in my chest I dont know how you do that every day, I mean, with medications and visits and everything, and actually the adolescent is, we are seeing the damage of that shes going through adolescence and shes, its just too much for her. I mean thats just too much stress and pressure to put on anyone, never mind a twelve-year-old, so I think shes starting to backlash at the mom now .[The mothers] reason she has a very good reason, is that she is very aware of her parents thoughts, feelings on HIV, and she will be out like that, so she, her impression is that she and her kids will be disowned, get out of the house, theyre so strongly opinionated about it. I guess its not an option shes dependent on them financiall, which Im sure hasnt helped. I mean it could be totally different if she were more financially independent, had her own home, I mean, then it wouldnt be that much of an issue. While this kind of enacted stigma was not experienced by most of the participants, the above instances of felt stigma were widely shared (Scambler 2009; Lekas et al. 2006). Additional Factors Complicating Adherence Adolescents success at managing their HIV and achieving favorable clinical outcomes depends on other clinical factors. The history of their disease (e.g., hig her and longer HIV replication following perinatal infection (Mullen et al. 2002)), pe rinatal infection with resistant HIV (Delaugerre et al. 2007), complications from opportunistic infections, side effects, changing medication regimens, and disease progres sion at the
203 initiation of HAART all have an impact on health outcomes (De Beaudrap et al. 2008) and successful, ongoing adherence. In addition, because there is evidence of developmental delay in some perinatally-infected individuals (Sherr et al. 2009), i t is critical that adherence strategies be tailored to accommodate the adolesc ents cognitive abilities. The prevalence of mental health problems also must be addressed, and these must be treated before or concurrently with the process of education about the detai ls and responsibilities of disease management. The clinicians interviewed for this research agreed that about half of their adolescent patients had mental health issues that required attention, and this percentage is supported in the literature on HIV-infected y outh (Lam et al. 2007). Unexpected Findings This study found that adolescents with perinatally acquired HIV were more l ikely to practice good adherence to medications and generally manage their disease w ell, if they were told their diagnosis at an early age (at or before age 10), had caregiver s who were open about HIV, were themselves relatively open and accepting of their di sease, and understood the clinical aspects of HIV and medication adherence. Of all the participants in this study, Katie appeared to reflect all of these themes i n her life. Nonetheless, she was not in the group of adolescents who were extremely adherent and had consistently undetectable viral loads. She herself did not describe her adhere nce as perfect. So, why was she not able to maintain an undetectable viral load over time? The reasons may stem from the history of Katies HIV disease, which was not specifically explored in this study. However, apart from past resistance issues and treatment experience, Katies inability to maintain an undetectable viral l oad by
204 achieving optimum adherence seems to be due to her relatively new status as an adul t she was 22 at the time of her interview and the assumption of responsibilities rel ated to this status. She was enrolled in college and talked about her busy school schedule and the fatigue that she felt was associated with it. She also chatted about the difference between childhood, when everything was taken of, and adulthood, when All my money has to go on bills. Even though she was disclosed to early and her mother was very open about the disease, Katie said that she did not take full, independent responsibility fo r taking her medicines until she was about eighteen. She believed that instruction on taking ones antiretroviral medications should begin early, so that when they do get on their own, itll be a lot easier for them to remember and to take them, and to really understand why theyre taking them and not just the fact you want your viral load low, but also the fact that you dont want to catch resistance to the medicine, because as fast as your virus will catch resistance to it, its not as fast as the pharmaceutical companies are going to be able to make medicine. When Katie assumed control of her medications and adherence, she found it was difficult, especially when she reached adulthood and assumed adult responsibilit ies. This turning point at which adolescents become adults, not in age but in responsibility, seems to reflect a point in the age continuum when adherence may become problematic. Bridget is another example. She had registered consecutive undetec table viral loads for over two years, but her recent lab tests showed a spike in these numbers She admitted to her provider that she had not been taking her medicines like she used to, because she was busy with work. Bridget was eighteen at the time of her interview, and about to graduate from high school. Her viral load spikes appeared after graduation, when she was experiencing new, more adult responsibilities.
205 Conversely, Lucy did not fit completely within the explanatory parameters of ideal adherence, yet she was consistently undetectable and said she never for got to take her medicines. She was not disclosed to at an early age, which was the most importa nt variable in the study participants adherence success. She was disclosed to at ag e fifteen, and was also strongly opposed to sharing her diagnosis with anyone. However, Lucys mother was a vocal and active AIDS advocate, and very open about her own status. This may have contributed to Lucys own personal acceptance that it was her fate to ta ke medicines every day. She was one of the few adolescents who talked about being afra id of what would happen if she forgot to take her medicines. She seemed to have internalized the medical aspects of HIV and the concept of adherence as the ba sis for her disease management, even referring to her medicines, somewhat wryly, as her three special friends. She knew the names of her medications and took a no-nonsense attitude toward them. Interestingly, Lucy had a sibling in this research study, who was disclose d to at an earlier age than Lucy. This sibling was less successful with adherence did not have consistently undetectable viral loads, and could not name the prescribed antiretrovi ral medications. This sibling had the same mother as Lucy, so there were simi larities in the social environment of the siblings. There do not seem to be overt differences in the two adolescents based on the findings of this research, yet one had significantly bet ter health outcomes and disease management. This puzzle may require further examination of pr ior disease history, as well as individual factors such as cognitive abilities a nd mental health issues.
206 The Role of the HIV-Positive Researcher Revisited For many people with HIV or AIDS, these two labels HIV and AIDS are charged with enormous power. AIDS continues to connote severe deterioration and approaching death; HIV is an infection you can live with. The following exchange during the mothers focus group, between a mother and me, with the perinatally infe cted daughter serving as translator (Spanish), touches on the distinction between HIV and AIDS: Researcher: Hows your mother doing, she forgets [her medicine] sometimes? Mother: Yes. R: How often? M: Just two, two or three times. R: Two or three times in how many, in how long? M: In a week. R: Two or three times a week. M: Yes. R: How about you [to daughter]? M: She take it every day. Daughter: I take it every day. M: She undetectable. R: And youre not? M: No. R: Youre not undetectable. M: No. D: She got AIDS. R: Yeah, but she can still be undetectable. Sometimes I describe myself as having AIDS to try to rob the virus inside m e of its dark power, to spit it out as I say the word, to show that a healthy, normal-looking person can have AIDS. I am not scary. I am not dying. However, in the interviews, I hardly ever used the term AIDS. In 22 interviews and one focus group, I said AIDS about ten times; in the first interview alone, I used HIV ten times. I know that I used the term HIV in order to make the discussion less threatening.
207 The fact of my own HIV infection is what turned my anthropological focus to HIV. Had my HIV test result been negative, I would now almost certainly be deepl y immersed in the cultural construction of anything but HIV. This is an admission t hat I find difficult to make, knowing that the fear before my diagnosis, which made me s hut out any reference to HIV, would probably have turned to relief and made me leave t hat AIDS problem to someone else. Having HIV has been a peculiar kind of education, supplementing my book learning and giving me the opportunity to look at other peoples illness experience both emically and etically with a bit more clarity. I can wade into another persons experience, and then step back. I have been able to take my HIV status and shape it into something good. But I have symbolic capital (Grove et al. 1997) that makes it easier for me to cope wi th this disease. No one important to me family, friends, colleagues has made me feel discredited (Goffman 1963:4). I have crossed a bridge of shame and can now deal with this almost completely as a clinical condition. But wait, that is not wholly true When I decided that I would tell the participants in this study that I, too, was living wit h HIV, I was open, as I usually am, to having them turn the tables on me. Only one adolescent did, and while I answered her questions, I noticed some discomfort. Unlike the perinatally infected individuals, I was responsible for my infection. Shame r esurfaces occasionally. And so I found I could empathize with these young people, on the brink of adulthood, as they begin to navigate emotional and sexual relationships with their HI V in tow. I knew the pressure of practicing safer sex as an adult, and I also knew the ease with which an adult can turn a momentary reckless eye, and HIV stares back. I realiz ed how much harder this can be for adolescents.
208 Ten years after my diagnosis, I have forgotten one pill one time, and taken a dose late a handful of times. I use an alarm for both my morning and my evening doses. On a daily basis, my HIV is a virus that I control zealously, and my viral load is cons istently undetectable. I want to make sure that my therapy options remain open, so I am obsessively vigilant about preventing resistance. I know that the virus may event ually become resistant to my current regimen no matter how adherent I am, but I do the only thing possible to ward off that evil. This is what HIV means to me, and the very differe nt meaning that the adolescents have grown up with and shaped anew as they entered adolescence is something that I struggled with during this study. I am an adult virtually 100% adherent to my antiretroviral medicines trying to understand the immense challenges of teenagers and young adults who are not. I thought that my being HIV-positive might help connect us as fellow suffere rs. I thought it might make the participants more comfortable in the interview if they knew that this woman asking the questions had to take medicines like they did. However, the world of adolescence is not one I inhabit, and they and I knew it. HIV disease is a phenomenon to which each of us brings to bear his or her lived experience, specific understandings, and historical background (Finlay 2002:534), as this study has shown. Thus, my experience has been very different from the adolescents, but it afforded m e a position of commonality with them regarding living with an incurable disease, and li ving with the knowledge that these medicines are going to be our special friends fore ver. I occupied a space of conscious partiality a critical and dialectical dis tance between the researcher and his objects (Mies 1983; quoted in Ellingson 1998:499) that allowed me to move into their HIV experience and back again into my researcher position.
209 I tried to listen to the adolescents lives so that I could understand what challenged them most, and discover what paths they could follow to take control of the ir disease. These findings can now be shared with the clinicians and other service provi ders who care for these young people, and recommendations for improving disease management can be proposed. Finally, the understanding of living with AIDS must be shared with the world, that we might disable the stigma and learn to embrace ea ch one of these adolescents as well as 33 million others as one of us.
210 CHAPTER 6: CONCLUSIONS AND RECOMMENDATIONS This study of HIV disease management in medical ecological perspective a mong perinatally infected adolescents has illustrated the challenges that y oung people face in learning to cope with a lifelong chronic illness. Since the advent of HAART in the m id1990s, a generation of children have grown into adolescence and adulthood. For the adolescents in this study, all born before or just at the introduction of HAART, their survival into their teens and twenties is a future their mothers did not think possible whe n they were born. Since then, these mothers and thousands of other parents, caregivers, a nd health care providers have been exploring and developing ways in which these children and young adults can best take control of their disease both medically and sociall y, can diligently manage a serious, incurable disease in order to remain healthy, a nd, at the same time, live a normal, untroubled childhood and adolescence. The management of HIV disease remains complicated, despite great improvements in treatment, and the stigma that attaches to those living with the disease remains pronounced. When these difficulties are encountered during the development of independence and maturity in adolescence, the process of gaining control in a health y way can be daunting. What are the elements in this process that help or hinder the successful management of HIV, in particular, the successful adherence to HA ART? What cultural and social influences impinge upon adolescents decisions about healt hrelated behaviors? Though this study was primarily an exploratory ethnographic analysis with a very small sample of adolescent participants, it nonetheless provides a rar e and
211 important glimpse of their perspectives on living with HIV. This study has drawn som e conclusions in answer to these questions, though it has also illustrated the uniqueness of each young persons lived experience and his or her individual approach to making a place for HIV in his or her life. Though the study was limited in scope, it has generated a number of recommendations that health care providers, social service providers, caregivers and adolescents can explore, collaborate on, and implement in order that perinatally i nfected adolescents move smoothly toward adulthood in good health. Conclusions The most important conclusion drawn from this research is the importance of early disclosure to the child of his or her HIV status. Closely related to this, be cause it may in fact facilitate early disclosure, is the parent or other caregiver s attitude of openness and confidence toward dealing with the challenges of HIV, in herself if she is the biological mother, and in the childs life regardless of who the caregiver is. S ome of the adolescents in this study had lost parents to HIV or had been taken from parents who had substance abuse problems, but if they had been brought up by caregivers who faced HIV with equanimity and acceptance, then the adolescent had the opportunity to adapt to his or her own HIV more easily and competently. The earlier in life that this proc ess of identification, understanding, and adaptation began, the more likely it was that a plac e for HIV would be established in the adolescents life and be less of a disruption (Bury 1982 ). This would be a place where the importance of HIV treatment was prominent, but the HIV per se was not.
212 Another key conclusion was the importance of a medical meaning of HIV in the adolescents life. This would not only ensure the understanding of the implications of HIV treatment, but it would replace, or at least shift to a less powerful position, t he more troubling social and cultural connotations of HIV. HIV would be less the scary secre t, and more the chronic nuisance. If adolescents learned how to make the medications a routine part of their daily lives, they would be able to make HIV management a norma l part of life. Hence, they could feel more normal, more like other young people. A third conclusion that is drawn from this study is the adolescents need for a better understanding of adherence, viral resistance, and HIV transmission risk. T his lack of understanding seems to be due in part to the failure to treat children and adolescents as capable participants in their care and treatment. As the clinicians and the lit erature both point out, the simultaneous coddling and commanding of children does not give them the tools to begin making decisions and taking responsibility, and results in difficult a nd often unsuccessful transition to adult clinical care (Wiener et al. 2007). In addition, being uninformed about the ramifications of adherence versus non-adherence puts the adolescent at risk for therapy failure and poor health outcomes and his or her sexual partners at greater risk for contracting HIV. Because adol escents with perinatally-acquired HIV have been prescribed antiretroviral therapy from a n early age, they are likely to have some resistant strains of HIV (Mullen et al. 2002). It is also possible that they were infected with a resistant strain carried by thei r mothers (Delaugerre et al. 2007). For this reason, adherence is extremely importa nt; it makes a lower viral load and thus reduced risk of HIV transmission to partners more likely and it also reduces the risk of further resistance to the adolescents current or fut ure regimens.
213 The adolescents HAART and viral resistance history notwithstanding, it is of utmost importance for these adolescents to understand and practice good adherence, both for their own health and for current or future sexual partners. Finally, this research points to the need for an exchange of chronic illness representations held by health care providers and adolescents. Because many pe rinatally infected adolescents are today living lives relatively free of symptoms opportunistic infections, and medication side effects, there may be a complacency in their at titudes toward adherence and toward the key health indicators, viral load and CD4 level. This i s also associated with their lack of comprehensive knowledge about HIV infection and its ramifications. On the other hand, health care providers need to know the beliefs and behaviors in the adolescents lived experience of HIV that are nonnegotiable, and work with the patients to find a model of HIV disease management that conforms to both the medical and the social and cultural demands of practitioner and patient. These imperatives need to be better understood, accepted, and integrated by both parties, if successful disease management and, therefore, favorable individual and public health outcomes, are to be achieved. Recommendations The following recommendations are directed toward service providers, pare nts and other caregivers, and adolescents with perinatally acquired HIV disease The adolescents who are seen at the USF pediatric clinic have access to a varie ty of professionals in addition to the clinicians: social workers, medical case manage rs, mental health professionals, nutritionists, nurse educators. Many of them also have acces s to support and social services though community-based case management agencies. All of
214 these professionals in the HIV service delivery system have the potential to g uide adolescents as they navigate the health care system, prepare for transition to a dult care, and continue their daily management of their HIV disease. These recommendations could be implemented in a number of the venues through which adolescents find care, treatment, and support: 1. Parents and caregivers of perinatally infected children should be counseled about disclosure beginning before the child is of school age. Their fears and anxiety, as well as their lack of medical knowledge, should be addressed. Disclosure should be delineated as a process (Lesch et al. 2007;Ledlie 1999; Lipson 1993), with information benchmarks developed according to the childs age (and cognitive abilities), with identification of HIV by age 10. 2. The roles and responsibilities of parent/caregiver and child regarding antiretroviral therapy should be clear-cut and age appropriate. Caregive rs should be counseled on setting up a plan for the gradual delegation of responsibility to the child, which includes the continual monitoring of children and adolescents to ensure that they are adhering to their medications successfully and not assuming full responsibility prematurely (Marhefka et al. 2008). 3. Counseling should be available and providers should work with biological mothers (and other family members) to cope with their own HIV status, so as to engender the openness that is necessary to accept the disease without fear and shame before disclosing to the child. It is important to know that
215 assistance to both the infected child and the family may need to be ongoing (Wilfert et al. 1999:165). 4. Adolescents must be given thorough, if basic, instruction on antiretroviral therapy, adherence, resistance, the implications of HIV adherence and resistance for transmission to sexual partners. They should understand the meaning of the viral load and the CD4 count, be encouraged to know their most recent lab results, and know the names, dosages, and schedules of their medications. This clinical instruction should begin with children as soon as they learn their HIV diagnosis, and before they are given responsibility for medications. The discussion should continue and become more detailed as children and adolescents are given increasing responsibility. 5. Provider and patient models of HIV disease management (Hunt and Arar 2001:353) should be constructed, compared, interpreted, and integrated to form a model of consensus that will promote success from the perspective of both the provider and the adolescent patient. This model can include a cost/benefit examination of adherence and disease management, which includes an adaptive compromise between providers and patients (Armelagos et al. 1992:42). Providers have to begin appropriate delegatio n of responsibility to the child while understanding the adolescents real soci al and cultural obstacles to good adherence. Partnership must be forged early on and continue throughout and be enhanced during adolescence, and the locus of control, as well as responsibility for successes and failures, must be sha red.
216 6. Reminder tools should be presented to and encouraged among adolescent patients. Pill boxes, small keychain pill containers, alarms on cell phones and watches, text messages, and other reminders that can be used wherever the adolescent is and can be discreet are more likely to be used and to be effective. This will enable adolescents to integrate the medications i nto their daily routines. 7. In keeping with nurse practitioner Eds endorsement, adolescent patients should be encouraged and allowed to have friends, and especially sexual partners, accompany them to their medical visits so that the disease and its implications can be explained and demystified for the adolescents peer networks. This should be part of ongoing encouragement of adolescents to share and talk about their disease with trusting peers. Suggestions for Future Research As an exploratory study of perinatally infected adolescents lived experie nce with HIV disease, this research was limited to a biocultural examination of the proxi mate contextual factors that influenced their decisions and behaviors surrounding HIV disea se management. A number of issues were raised by this research that should be addres sed in subsequent studies. Mental health problems and treatment were not the focus of this research and were not discussed by the adolescents, but the clinicians in this study, as well as some studies documented in the literature on HIV-infected adolescents, acknowledged the prevalence of mental health diagnoses and their impact on successful disease management, especially medication adherence (Williams et al. 2006; Dodds et al. 2003;
217 Murphy et al. 2001). Whether higher rates of psychiatric problems are due to HIV it self or to the socioecological environment (household and caregivers where HIV is prese nt) is another question requiring further investigation (Williams et al. 2010). Since ment al health disorders in adolescents are also often underidentified (Murphy et al. 2005), mor e attention to mental health in adolescents and specific research on HIV-infected adolescents may shed light on whether and how mental health influences adherence outcomes. The presence of psychiatric symptoms may also have an impact on substance use in adolescents (Williams et al. 2010). One of the clinicians in this study mainta ined that among those adolescents who had problems with medication adherence, many also had substance use problems. Thus, with or without accompanying mental health disorders, the association of substance use with lower adherence to medications is another iss ue that merits further study. Antiretroviral therapy today has vastly improved in terms of pill burden, complicated pill schedules and ability to tolerate the medications. There is al so a greater availability of alternative regimens as new drugs have been developed and approve d. This means that adherence problems due to difficult regimens and side effects ha ve been attenuated. None of the participants in this study had serious problems with side ef fects, yet this may be one factor that affects optimum adherence (Kourrouski and Lim a 2009). In particular, adolescents who have been on HAART since birth, may have already changed regimens several times, and have fewer options available to them. Thus, an exploration of the history of adolescents drug regimens, resistance to certa in drugs, and
218 the difficulties they are experiencing with their current medications ma y shed insight into the adherence issues of this particular population. Given that the adolescents HIV disease management was situated in medical and social spheres of influence, in-depth observation of these environments would elucidat e additional factors that affect decision making about adherence and disclosure, as well as the experience of both stigma and support. Shadowing adolescents as they navigate the ir school, family, and clinical relationships, coupled with focus groups with adolescents, both HIV-positive and HIV-negative, would have the potential of illuminating the social conditions and cultural domains (Trotter 1997) that engender conceptions and perceptions of HIV, AIDS, adherence, stigma, and acceptance. Such up-close observation may a lso reveal the situational temptations (MacDonell et al. 2011) that adolescents face in their daily experience with HIV disease. Observation of and further in-depth interviews with clinicians and patients are necessary in order to discover and understand the impact of the clinician-patient interaction on adolescents acceptance of responsibility for disease manageme nt and their ability to fulfill that responsibility successfully. This study showed ver y different interaction styles of the clinicians, and further study might determine the int eraction styles that are most effective in connecting with adolescents, encouragin g learning and the assumption of responsibility, and improving adherence and health outcomes. The comprehensiveness of the USF pediatric system of HIV medical care a llows patients multiple needs to be met at one location, yet further study would answer questions about whether adolescents dislike of long clinic visits is ultimate ly detrimental to their engagement in their own care and treatment. It is also necessary, now that
219 perinatally infected children are reaching adulthood, to see how the pediatric mode l of care, in which the locus of responsibility rests heavily with the provider, affe cts adolescents and young adults readiness for transition to adult care (Foster et al. 2007; Wiener et al. 2007). An examination of the efficacy of the transition preparati on program at the pediatric clinic and the need for implementation of best practices ar e also needed, as adolescents may find the transition more difficult than anticipated (Fair et al. 2010) and many will not successfully transition despite preparation at the pediatric clinic (Barrett et al. 2010). The survival of perinatally infected children into adulthood means that these individuals must confront their futures, which includes having children. While the present study did not focus on future goals, a number of the participants mentioned the goals of continuing their education, getting a job, and having children. Part of disea se management, therefore, will mean preventing second-generation mother-to-chi ld transmission, which has been referred to as super-vertical transmission (M itchell et al. 2008). Adherence and viral suppression become increasingly important for young infected pregnant women, if they are to reduce the probability of transmission t o their newborns. This is especially important since second-generation perinatal trans mission may involve virus that is resistant to certain antiretroviral drugs (Brog ly et al. 2007). Finally, given that many of the participants in this research disclosed the ir HIV status to very few friends, and most had little or no contact with other HIV-positi ve adolescents, a study of the barriers to social support among perinatally-infe cted adolescents is warranted. The positive effects of this kind of peer support on disease
220 management, including adherence, and on other healthy behaviors require further st udy (Dodds et al. 2003). Coda Caregivers and health care providers, and others who are aware of the adolescents diagnosis, must be given the tools to engender a narrative of hope in adolescents with perinatally acquired HIV. Only one participant in this study had been given the opportunity to see her HIV status in a positive light and foresee a mea ningful future: even though Im just another person on this planet, like just realizing that I can make a difference, and thats just kind of helped me a lot Im thinking like maybe, as a big picture, what that would mean would probably be like working for the WHO in like Africa and China and places like that, you know. So I would be making a difference to people around the world, I guess, who are HIV positive or not. [Rachel] Adolescents with perinatally acquired HIV disease are now reaching the ag e of thirty, and it is incumbent upon those around them to guide them, from early childhood and through adolescence, to anticipate an adulthood of possibility and productivity. This can be done during adolescence by encouraging them to push the boundaries of their disease a nd to plan for their futures. Whether or not this entails work related to HIV and AIDS is of course, up to each of them, but they need learn that with the proper knowledge and management of their HIV, this disease need not manage them. I end with a passages from two anthropological works written about another chronic disease, epilepsy, which acclaim the power of social and cultural narra tives: [N]arrative is uniquely suited to represent illness and reality as open to mystery, potency and change (Good et al. 1994:837). Possibilities for transformation in the conditions of the afflicted are kept alive. Multiple perspectives and divergent interpretations are
221 encouraged. Alternate sources of power for potential transformations are conjured; social actors reject the anticipated; hope is engendered (Kleinman et al. 1995:1320). The lived experience of adolescents with perinatally acquired HIV needs to spa wn new narratives of power and reinvention, both for the adolescents personal growth and for societys conversion, narratives which resist the orthodoxy of stigma that has g overned HIV and AIDS for too long. We must now draw on the lessons discovered in this study to facilitate the acceptance of HIV and consequent successful disease manag ement among those living with this disease.
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251 Appendix A: Adolescent Medication Questionnaire Adherence Issues among Adolescents Perinatally Infected with H IV Adolescent Medication Questionnaire Part 1: Personal Information Name: ________________________ ID Number: _____________ Age: _______ Date of Birth: ____/____/______ Gender: Female Male Ethnicity: Hispanic Non-Hispanic Race: Black White More than one Other (Specify) ________________ Part 2: Naming medications and describing medication schedule 2.1 What medications do you currently take for your HIV disease? __________________________________________________________________ 2.2 What other medications do you take, besides your HIV meds? (If no other medications, write none.) __________________________________________________________________ 2.3 Complete the table for your HIV medications only. Medication Name How many per day? When do you take it/them? Any specific instructions (with/without food, at a specific time, etc.)
252 Appendix A: (Continued) Part 3: Medication Adherence 3.1 Thinking about the last two weeks, how many days did you skip an HIV medication for any reason? 0 1 2-3 4 or more 3.2 If you skipped an HIV medication in the last two weeks, was it A single pill A single medication (all of the pills for that day) All of your HIV medications on that day 3.3 What were the reasons that you skipped your medication in the past two weeks? _______________________________________________________________________________________________________________________________________________________________________________________________________________ 3.4 What things make it difficult for you to take your medications as instructed? _______________________________________________________________________________________________________________________________________________________________________________________________________________ 3.5 How often would you say you skip a pill or pills overall? Once a month Twice a month 3 or more times a month 3.6 Does your doctor or nurse talk to you about taking your medications? Yes No What does he/she say about taking your medications? _______________________________________________________________________________________________________________________________________________________________________________________________________________ 3.7 Do you talk to your doctor or nurse about any problems or issues you have with your medications? Yes No
253 Appendix A: (Continued) What does he/she say? What does he/she tell you to do? _______________________________________________________________________________________________________________________________________________________________________________________________________________ 3.8 On a scale of 1 to 10, how well does your doctor or nurse understand your issues, challenges, problems, and experience with taking HIV medications? 1 2 3 4 5 6 7 8 9 10 /_______/______/______/______/______/______/______/______/_____/ 1Doesnt understand at all -----------------------------10 Understands everything
254 Appendix B: Semi-structured Adolescent Interview Guide 1. When were you told that your illness was HIV disease? Who told you? What were the circumstances? 2. How did you feel when you learned your diagnosis? 3. Tell me what it is like for you living with HIV. (Probe for physical effects illnesses and hospitalizations, change in medication regimen, social support social difficulties, stigma, goals and the future, medical care and providers family support/difficulties.) 4. Describe a typical day in your life. How do you spend your weekends and free time? (Probe for how often HIV is part of that day, how often they think about it, etc.) 5. What medicines do you take for HIV? Describe your regimen number of pills per day, time of pill-taking, other instructions (with/without food, spacing of different pills, refrigeration, etc). 6. What problems do you have that you feel are associated with taking your HIV meds? (Probe for physical side effects, complicated regimen, keeping medications hidden from others, fitting medication taking into schedule.) 7. How difficult is it for you to take your pills every day and according to the directions? 8. Do you ever not take your HIV meds? Under what circumstances? 9. What does adherence mean to you? (Explain adherence.) 10. Describe your relationship with your health care providers doctor, nurse, soci al worker, mental health professional. 11. How would you rate your HIV health care? 12. Have you disclosed your illness to your friends? Others? For those to whom you have disclosed, how did you choose these people to share your diagnosis? What were the circumstances? How did the person react to this news? For those not disclosed to, why havent you disclosed to these people? 13. What is your family life like? (Probe for household makeup, socioeconomic situation.) What other family members are positive? (Probe for health care, medication regimens, attitudes toward HIV and medications of positive family members.)
255 Appendix B: (Continued) 14. Do you have a boyfriend/girlfriend? How old is he/she? Does he/she know about your HIV? Do your closest friends have boyfriends/girlfriends? How impor tant is having a boyfriend/girlfriend to you? 15. What does safer sex mean to you? 16. (If participant has boyfriend/girlfriend) Are you in a sexual relationship wi th your boyfriend/girlfriend? (If yes) What does that mean? Are you practici ng safer sex? What does that entail?
256 Appendix C: Clinician Interview Guide All questions pertain to perinatally infected adolescents. 1. How long is a typical care visit with an adolescent? 2. What percentage of the visit time is comprised of you, the provider, talking or explaining? 3. What percentage of the visit time is comprised of the adolescent patient speaking or explaining? 4. Do you set aside any time during the visit to speak to the adolescent privately? 5. How involved are your adolescents in their personal treatment and management of HIV? 6. Do you conduct sexual histories with your adolescent patients? All? Which ones? What is included in your sexual history? Do you discuss sexual activity and risk with your patients? What do you include in this discussion? 7. How often do you talk to your adolescent patients about adherence? What does adherence counseling include? How involved are your adolescents in their individual treatment plan? In your opinion, what is the biggest barrier to adherence among your adolescent patients? In your opinion, what is the most important facilitator of adherence among your adolescent patients? 8. What percentage of patients seen WITHIN THE PAST THREE MONTHS received the following screenings and/or assessments? Mental Health Screening: None 1-24% 25-49% 50-74% 75-100% Dont know Alcohol & Substance Use Screening: None 1-24% 25-49% 50-74% 75-100% Dont know
257 Appendix C: (Continued) Behavioral Risk Assessments: None 1-24% 25-49% 50-74% 75-100% Dont know STD Screening: None 1-24% 25-49% 50-74% 75-100% Dont know 9. What percentage of your patients seen WITHIN THE PAST THREE MONTHS has the following diagnoses? Hepatitis C % Mental health disorder % Drug and/or alcohol problems % Any STI % TB % AIDS (Progressed to AIDS) % OI % Other complicating condition % What conditions? 10. What percentage of your patients do you estimate consult with a traditional heal er and/or complementary and alternative medicine (CAM) practitioner or engag e in alternative medicine practices? 11. A. What do you see as the three major health care issues or needs among the adolescents you serve at this clinic? 1. 2. 3. B. Of their parent(s) or caretakers? 1. 2. 3.
258 Appendix C: (Continued) C. What do you see as the three major non-health-related issued that affects the adolescents health and health care? 1. 2. 3. 12. Describe the relationship between the adolescent patient and you, his or her health care provider. 13. What barriers do you experience in providing the best possible care to HIVinfected adolescents? (Suggest the following, if necessary.)  Limited Resources  Lack of Provider Expertise  Other Health Priorities  Lack of Provider Interest  Patients/Clients Not Aware of Services  Issues of Confidentiality  Issues of Cultural Competency  Language Barriers  Other specify ____________________
259 Appendix D: Focus Group Protocol Before the focus begins: Have copies of consent form. Collect signed consen t forms. Have pens, sticky notes, dots, name tags, and voice recorder ready. Set out snacks. Introducing the focus group activity: 1. Go over ground rules Confidentiality keeping what is said in the group private. Assure them that anything said during the focus group will not be shared with their parents or any one at the clinic, except when the research is finished, and none of their identities w ill be shared. It will be general things that I found out, or I will refer to you as a p articipant. You can use your ID number instead of your name. When you speak, say your number first. Only one person speaks at a time. Respect everyones input. Remember that there may be differences of opinion and experience. 2. Explain research study. This is a study in which I want to understand living with HIV and managing HIV in the everyday lives of perinatally infected adolescents, from their perspe ctive. We know medically what HIV is and how it is treated. I, as an adult with HIV, understa nd some of the challenges that older women have when theyre living with this disease Adolescents and young adults will deal with their challenges differently, and for those who were born with HIV, and have had to take medications and see the doctor regularly, and maybe have had other illnesses, and have family members with HIV, the experi ence will be different as well. This study is an opportunity for youth to tell their stories, to share the challenges they face, to share with us ways in which they have manage d well with the disease, the experiences that are their own and affect the way they deal with HIV
260 Appendix D: (Continued) in their relationships with other people, in their health care, in their medication is sues, in their family life. We at FAN have perinatally infected youth who live in many different kinds of family and household situations. One of the unique relationships for these youth, however, is that between them and their biological mothers. Since all of you are inf ected with HIV and transmitted the virus to your child, there are no doubt interactions, attitudes, problems, benefits of this mother-child relationship that influence the hea lth and wellbeing of your child, as well as the way in which your child approaches he r/his HIV disease and life in general. In a focus group such as this, we bring together a group of people who focus on a topic that is of interest to the researcher. There are several topics that I want you to think and talk about during this focus group. I will introduce a topic, and pose some general questions, and then you will take turns discussing the topic, responding to other peoples ideas, and together presenting your thoughts on those topics. We may use the sticky notes and dots for some of the questions, so I may pose a question and have you write down some ideas, then put them in order of importance using the dots. Then we will share what youve written as a group. In a group discussion, it is important t o hear from everyone, so I may need to cut in at some points in order to let other people speak. Since we will have only about 10 minutes per question, it will be important to try to limit your responses to a minute or two, if possible.
261 Appendix D: (Continued) 3. Introduce Focus Group Topics/Questions for Discussion 1. Talk about your diagnosis. Did you disclose to family and friends? What were the reactions of your family and friends? 2. Talk about how you feel today about being HIV+. 3. What is the worst thing about having HIV? 4. What is the best thing about having HIV? 5. Talk about what it was like learning that your child was infected with the virus 6. When and how did you disclose your disease and his or her own disease to your child? 7. At what age was the child told he/she had HIV the word HIV was used. 8. At what age did you want to disclose, i.e., did you have any misgivings about disclosing when you did? 9. Discuss the strengths and weaknesses of your health care. How happy are y ou with (how would you rate) your health care? 10. Discuss the strengths and weaknesses of your childs health care. How happy are you with (how would you rate) your childs health care? 11. What do you know about HIV and your own health indicators relating to HIV (viral load, CD4 count, etc.)? 12. How would you rate your adherence to your medications? 13. What do you know about antiretroviral therapy the drugs, the medication schedules, the effects, the side effects, the effectiveness, drug resist ance, etc.? 14. Discuss your childs medication regimen and the responsibilities, roles, involvement of you and the child in the childs taking of and adherence to the medications. How much independence, and in what areas, does your child have in her/his management of HIV in her/his everyday life? 15. In thinking about the management of HIV in your life and your childs life, what do you do to stay healthy and to ensure your and your childs longevity? Include all things, not just your doctor visits and antiretroviral therapy.
262 Appendix E: Codes for Analysis Adolescents Interviews Adjustment Adolescent Responsibility/Independence Age of Disclosure Age of Disclosure-Early Age of Disclosure-Intermediate Age of Disclosure-Late Benefits/Social Supports Caregiver Involvement in Medication CD4 or VL Mention Cultural Factors Disclosure to Boy/Girlfriend/Sexual Partner Disclosure to Friends Disclosure to Others Family Stability Family Support Future Goals Health Status Length of Current Regimen Loss of Parent/HIV+ Parent Lying Medication Adherence Medication Name Knowledge Obstacles Peer Support Provider-Patient Relationship Psychosocial Issues Resistance Risky Behaviors Secrecy Sexual Activity Stigma Understanding of HIV/Resistance Clinician Interviews Accidental Disclosure Adherence Adolescent Engagement Adolescent Issues Alternative Therapies Barriers to Adherence Barriers to Care Developmental Delay Disclosure Legal Issues Medications Mental Health Problems Relationship with Patients Resistance and Labs Secrecy Sexual Activity STIs Substance Use Mothers Focus Group Child's Adherence Child's Independence Disclosure to Child Distrust Health Care and HC Providers Medications and Adherence Mothers Own Diagnosis
263 Appendix F: Graphs of Adolescent Viral Loads Paula48 48 48 48 48 48 480 100 200 300 400 500Jan-09Mar-09 May-09 Jul-09 Sep-09 Nov-09 Jan-10Mar-10 May-10 Jul-10 Sep-10 Viral Load Lucy0 50 100 150 200 250 300 350 4005/1/087/1/089/1/08 11/1/08 1/1/093/1/095/1/097/1/099/1/09 11/1/09 1/1/103/1/105/1/107/1/10 Rachel50484848484848500 100 200 300 400 500Mar-08 May-08 Jul-08 Sep-08 Nov-08 Jan-09Mar-09 May-09 Jul-09 Sep-09 Nov-09 Jan-10Mar-10 May-10 Jul-10 Sep-10 Viral Load
264 Appendix F: (Continued) Valerie48 48 48 48 48 48 48 48 480 100 200 300 400 500Mar-08 Jun-08 Sep-08 Dec-08 Mar-09 Jun-09 Sep-09 Dec-09 Mar-10 Jun-10 Sep-10 Viral Load Nina48 4848 4848 48 196 7650 200 400 600 800 1000Dec-08 Feb-09 Apr-09 Jun-09 Aug-09 Oct-09 Dec-09 Feb-10 Apr-10 Jun-10 Aug-10 Viral Load Mark484848484848 50 4000 100 200 300 400 500Feb-08 Apr-08 Jun-08 Aug-08 Oct-08 Dec-08 Feb-09 Apr-09 Jun-09 Aug-09 Oct-09 Dec-09 Feb-10 Apr-10 Viral Load
265 Appendix F: (Continued) Bridget48 48 48 48 4848 48 48 48 7413 52290 1000 2000 3000 4000 5000 6000 7000 8000Apr-08 Jul-08 Oct-08 Jan-09 Apr-09 Jul-09 Oct-09 Jan-10 Apr-10 Jul-10 Oct-10 Viral Load Katie1140 75 253 400 48 480 200 400 600 800 1000 1200Oct-08 Dec-08 Feb-09 Apr-09 Jun-09 Aug-09 Oct-09 Dec-09 Feb-10 Apr-10 Jun-10 Aug-10 Viral Load Jeff484848 466 481 1511 48 48 48 152661 10 100 1000 10000 1000004/1/086/1/088/1/08 10/1/0812/1/08 2/1/094/1/096/1/098/1/09 10/1/0912/1/09 2/1/104/1/106/1/108/1/10 10/1/10Logarithmic Scale Viral Load
266 Appendix F: (Continued) n4848 934 96 48 87 100159 131100 56900 95500 6311 10 100 1000 10000 100000 10000001/19/083/19/085/19/087/19/089/19/08 11/19/08 1/19/093/19/095/19/097/19/099/19/09 11/19/09 1/19/103/19/105/19/107/19/10Logarithmic Scale Angela1399 1972 2251 64 48 35069 2530 4981 100 100003/10/085/10/087/10/089/10/08 11/10/08 1/10/093/10/095/10/097/10/099/10/09 11/10/09 1/10/103/10/10Logarithmic Scale Viral Load Stephanie2568 36694 230 279 198 137 22463 21830 4129 271 481 10 100 1000 10000 1000001/1/20083/1/20085/1/20087/1/20089/1/2008 11/1/2008 1/1/20093/1/20095/1/20097/1/20099/1/2009 11/1/2009 1/1/20103/1/2010Logarithmic Scale Viral Load
267 Appendix F: (Continued) Diana5282 1537 4580 7687 249400 5000 10000 15000 20000 25000 30000Jun-08 Aug-08 Oct-08 Dec-08 Feb-09 Apr-09 Jun-09 Aug-09 Oct-09 Dec-09 Feb-10 Viral Load i Zoe4848 3497 1774 2415 555 6562 3942 48 168193 594r rr rrr rr rrr rr rrr rr rrr rr rrr rr rrr rr rrr3/1/085/1/087/1/089/1/08 11/1/08 1/1/093/1/095/1/097/1/099/1/09 11/1/09 1/1/103/1/105/1/107/1/109/1/10 Viral Load Olivia1100 810 2700 68 985 1713 827 28810 500 1000 1500 2000 2500 3000 3500Feb-08 Apr-08 Jun-08 Aug-08 Oct-08 Dec-08 Feb-09 Apr-09 Jun-09 Aug-09 Oct-09 Dec-09 Feb-10 Apr-10 Jun-10 Viral Load
268 Appendix F: (Continued) Keith4682 4038 3446 8119 1206 2225 17753 349970 2500 5000 7500 10000 12500 15000 17500 20000 22500 25000 27500 30000 32500 35000 37500Feb-08 May-08 Aug-08 Nov-08 Feb-09 May-09 Aug-09 Nov-09 Feb-10 May-10 Aug-10 Nov-10 Viral Load Sean7805 4639 39720 2000 4000 6000 8000 100003/1/20085/1/20087/1/20089/1/2008 11/1/2008 1/1/20093/1/20095/1/20097/1/20099/1/2009 Viral Load
269 Appendix G: Graphs of Adolescent CD4 Counts/Percents Paula534 864 1590 811 802 562 843 96239 39 40 44 43 45 39 410 200 400 600 800 1000 1200 1400 1600 1800Jan-09Mar-09 May-09 Jul-09 Sep-09 Nov-09 Jan-10Mar-10 May-10 Jul-10 Sep-10 Nov-10CD4 Count10 20 30 40 50 60CD4 Percent CD4 Count CD4 Percent Lucy1009 857 868 743 1221 1089 1178 33 32 26 31 28 35 33r rr rr rr rr rrr rr rr5/1/087/1/089/1/08 11/1/08 1/1/093/1/095/1/097/1/099/1/09 11/1/09 1/1/103/1/105/1/107/1/10CD4 Countr r r rCD4 Percent CD4 Count CD4 Percent Rachel707 712 798 746 718708 746 511 39 41 43 41 48 42 40 420 200 400 600 800 1000Mar-08 May-08 Jul-08 Sep-08 Nov-08 Jan-09Mar-09 May-09 Jul-09 Sep-09 Nov-09 Jan-10Mar-10 May-10 Jul-10 Sep-10CD4 Count25 35 45 55CD4 Percent CD4 Count CD4 Percent
270 Appendix G: (Continued) Valerie720 653 722 801 702 747 680 948 694 31 31 28 28 28 28 32 30 320 200 400 600 800 1000Feb-08 May-08 Aug-08 Nov-08 Feb-09 May-09 Aug-09 Nov-09 Feb-10 May-10 Aug-10 CD4 Count20 25 30 35 40 45 50CD4 Percent CD4 Count CD4 Percent Nina354 387 480 581 447 643 500 28 29 29 33 300 100 200 300 400 500 600 700Nov-08 Jan-09Mar-09 May-09 Jul-09 Sep-09 Nov-09 Jan-10Mar-10 May-10 Jul-10 Sep-10CD4 Count20 25 30 35 40 45 50 55 60CD4 Percent CD4 Count CD4 Percent Mark848 533 864 731 842 919 981 901 1093 32 32 32 29 30 31 33 3030 0 200 400 600 800 1000 1200Jan-08 Apr-08 Jul-08 Oct-08 Jan-09 Apr-09 Jul-09 Oct-09 Jan-10 Apr-10CD4 Count20 25 30 35 40 45 50CD4 Percent CD4 Count CD4 Percent
271 Appendix G: (Continued) Bridget902 514 509 973 742 961 1333 908 1004 1031 43 47 36 47 48 46 45 50 45 50400 600 800 1000 1200 1400Apr-08 Jul-08 Oct-08 Jan-09 Apr-09 Jul-09 Oct-09 Jan-10 Apr-10 Jul-10 Oct-10CD4 Count0 10 20 30 40 50 60CD4 Percent CD4 Count CD4 Percent Katie592 409 765 779 875 489 33 33 21 35 18 260 200 400 600 800 1000Oct-08 Dec-08 Feb-09 Apr-09 Jun-09 Aug-09 Oct-09 Dec-09 Feb-10 Apr-10 Jun-10 Aug-10CD4 Count10 20 30 40 50 60CD4 Percent CD4 Count CD4 Percent Jeff335 432 745 611 485 516 630 53421 26 24 22 14 24 25 290 200 400 600 800May-08 Jul-08 Sep-08 Nov-08 Jan-09Mar-09 May-09 Jul-09 Sep-09 Nov-09 Jan-10Mar-10 May-10CD4 Count10 20 30 40 50 60CD4 Percent CD4 Count CD4 Percent
272 Appendix G: (Continued) Vanessa745 398 302 878 786 777 696 484 409 523 38 34 36 31 31 29 30 26 27 310 200 400 600 8002/19/084/19/086/19/088/19/08 10/19/0812/19/08 2/19/094/19/096/19/098/19/09 10/19/0912/19/09 2/19/104/19/106/19/10CD4 Count0 20 40 60 80 100CD4 Percent CD4 Count CD4 Percent Angela299 285 305 349 405 284 264 229 265 2929 28 25 29 30 25 320 100 200 300 400 5003/10/20085/10/20087/10/20089/10/2008 11/10/2008 1/10/20093/10/20095/10/20097/10/20099/10/2009 11/10/2009 1/10/20103/10/2010CD4 Count20 30 40 50 60CD4 Percent CD4 Count CD4 Percent Stephanie272263 454 327 285 309 355 354 314 33 34 34 31 31 29 32 320 100 200 300 400 500Feb-08 Apr-08 Jun-08 Aug-08 Oct-08 Dec-08 Feb-09 Apr-09 Jun-09 Aug-09 Oct-09 Dec-09 Feb-10CD4 Count20 30 40 50 60CD4 Percent CD4 Count CD4 Percent
273 Appendix G: (Continued) Diana289 290 440 327 260 30 27 260 100 200 300 400 500Jun-08 Aug-08 Oct-08 Dec-08 Feb-09 Apr-09 Jun-09 Aug-09 Oct-09 Dec-09 Feb-10CD4 Count0 10 20 30 40 50 60CD4 Percent CD4 Count CD4 Percent Zoe523 510 678 618 610 587 496 702647 457 37 37 3434 30 24 22 18 340 100 200 300 400 500 600 700 800Mar-08 Jun-08 Sep-08Dec-08 Mar-09 Jun-09 Sep-09Dec-09 Mar-10 Jun-10 Sep-10CD4 Count15 20 25 30 35 40 45 50 55 60CD4 Percent CD4 Count CD4 Percent Olivia 140 404 445 346 489 37 33 41 24 21 18 6 4 3 3 0 100 200 300 400 500 600Feb-08 May-08 Aug-08 Nov-08 Feb-09 May-09 Aug-09 Nov-09 Feb-10 May-10CD4 Count0 10 20 30 40 50CD4 Percent CD4 Count CD4 Percent
274 Appendix G: (Continued) Keith610 530 595 597 657 484 21 20 21 200 100 200 300 400 500 600 700Mar-08 Jun-08 Sep-08Dec-08 Mar-09 Jun-09 Sep-09Dec-09 Mar-10 Jun-10CD4 Count10 15 20 25 30 35 40CD4 Percent CD4 Count CD4 Percent Sean735 513 633 540 38 32 250 200 400 600 8002/1/20084/1/20086/1/20088/1/2008 10/1/200812/1/2008 2/1/20094/1/20096/1/20098/1/2009CD4 Count15 25 35 45 55CD4 Percent CD4 Count CD4 Percent
ABOUT THE AUTHOR Barbara Szelag earned a Masters Degree in African Studies and a Ma sters Degree in Public Health from UCLA, and a Bachelors Degree in Biology from Vassar College. She was a Peace Corps Volunteer in Benin from 1980 to 1982, where she taught high school biology in Aplahou. She also taught English as a Second Language from 1989 to 1993 at the American Cultural Center in Lom, Togo. Since 2001, she has been the Data Quality Manager and Quality Management Coordinator for the Florida Fa mily AIDS Network, a Ryan White, Part D-funded program that provides clinical and soci al support services to HIV-infected and affected women, infants, children, youth, and families in the Tampa Bay area.