Caregiver perspectives on appointment-keeping in an outpatient pediatric HIV clinic

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Caregiver perspectives on appointment-keeping in an outpatient pediatric HIV clinic

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Title:
Caregiver perspectives on appointment-keeping in an outpatient pediatric HIV clinic
Creator:
Shively, Nora M.
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Tampa, Florida
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University of South Florida
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English
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vii, 100 leaves : ill. ; 29 cm

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Patient compliance ( lcsh )
Pediatric clinics ( lsch )
HIV (Viruses) ( lcsh )
Dissertations, Academic -- Applied Anthropology -- Masters -- USF ( FTS )

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General Note:
Thesis (M.A.)--University of South Florida, 2001. Includes bibliographical references (leaves 71-76).

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University of South Florida
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University of South Florida
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All applicable rights reserved by the source institution and holding location.
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028871831 ( ALEPH )
51111074 ( OCLC )
F51-00163 ( USFLDC DOI )
f51.163 ( USFLDC Handle )

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CAREGIVER PERSPECTIVES ON APPOINTMENT-KEEPING IN AN OUTPATIENT PEDIATRIC HIV CLINIC by v NORA M SIDVEL Y A thesis submitted in partial fulfillment of the requirements for the degree of Master of Arts Department of Anthropology College of Arts and Sciences University of South Florida December 2001 Major Professor : Michael Angrosino Ph. D.

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Ex amining Committee: Office of Graduate Studies University of South Florida Tampa, Florida CERTIFICATE OF APPROVAL This is to certify that the thesis of NORA M SHIVELY in the gra duate degree program of Applied Anthropology was approved on November 13, 2001 for the Master of Arts degree Linda Whiteford Member : Nancy Romero-Daza, Ph.D

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Dedication This thesis is dedicated to the women who inspired it. These women are mothers, daughters, aunts, sisters, cousins grandmothers co-workers, colleagues and friends. They are the women who care for HIV -infected and -affected children They are HIV infected women themselves. They are the women who courageous l y shared their stories during the surveys and interviews for this thesis. They are the women who supported the writing of this thesis by encouraging me and loving me throughout the past six years In particular, the two women I would like to thank most of all are my mother, Patricia M. Shively and my aunt Alice McArdle for their constant caring, their wise advice and their unwavering love.

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Acknowledgements I would like to acknowledge the many people who helped make this thesis a reality This list is not all-inclusive, but an honest attempt to recognize those individuals who played an integral role in the process Firstly, I would like to recognize my master's thesis committee: Dr. Michael Angrosino, a wonderful advisor and major professor; Dr. Linda Whiteford, an inspiring professor and mentor; and, Dr. Nancy Romero-Daza, a dedicated activist and an agent of change. I would like to thank all of the members of the University of South Florida/Children's Medical Services Pediatric Infectious Di s ease staff in Tampa for their help, encouragement and support. This could not have happened without them. I would like to express great appreciation to my co workers within the Florida Family AIDS Network, especially Dr. Jay Wolfson, for their support of my endeavors Lastly, I would like to acknowledge my fellow students for their willingness to share ideas time, work and support during the past six years.

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Table of Contents List of Tables m List of Figures IV Chapter One 1 Chapter Two 7 In the Medical Literature 8 In the Public Health Literature 14 In the Anthropological Literature 17 Conclusion 20 Chapter Three 22 The Setting 22 Data Collection 23 Limitations of Study 30 Data Analysis 31 Chapter Four 32 Demographic Characteristics of Survey Participants 32 Statistical Analysis of Demographic Characteristics 35 Ratings ofPercent Kept Appointments (Client/Self, Staff/Provider Chart) 36 Statistical Analysis 38 Survey Responses 3 9 Feelings/Beliefs/ Attitudes 40 Life Factors 42 Transportation 42 Life Activity Level 44 Caregiver s General State ofWell Being 45 Interventions 4 7 Relating the Findings to the Literature Review 48

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Chapter Five 49 Demographic Characteristics of Caregivers 49 Ratings of Percent Kept Appointments (Client/Self, Staff/Provider, Chart) 51 Feelings / Beliefs/ Attitudes 52 Life Factors 55 Interventions 57 Chapter Six 59 Conclusions 59 Strengths 59 Areas of Difficulty 60 Recommendations 61 For the Staff/Providers 61 For the Clinic 63 For the Community 65 Chapter Seven 67 Critical Review 67 The Anthropological Connection 69 Areas for Future Study 69 References Cited 71 Appendices 77 Appendix A: Caregiver Survey 78 Appendix B : Interview Questions 98 11

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List of Tables Table 1 Main Racial or Ethnic Group 32 Table 2 Pearson Correlation : Education Level, Age 35 Table 3 Client/Self Ratings 36 Table 4 Provider Ratings 37 Table 5 Chart Ratings 37 Table 6 Descriptive Statistics : Client/Staff/Chart Ratings 38 Table 7 Multivariate Tests 38 Table 8 Paired Samples Test 39 Table 9 Feelings about Appointment-Keeping 40 Table 10 Pearson Correlation : Difficult/Easy 40 Table 11 Beliefs/ Attitudes about Appointment-Keeping 41 Table 12 Pearson Correlation : Effect on Child s Health 41 Table 13 Pearson Correlation : Transportation 43 Table 14 Pearson Correlation: Life Activity Level 45 Table 15 Pearson Correlation : Caregiver s State ofWell Being 46 Table 16 Pearson Correlation : Interventions 47 lll

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List ofFigures Figure 1 Caregivers Ages 32 Figure 2 Household Income 33 Figure 3 Highest Year of School Completed 33 Figure 4 Household Size 34 Figure 5 Caregivers Health Status 34 IV

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CAREGIVER PERSPECTIVES ON APPOINTMENT -KEEPING IN AN OUTPATIENT PEDIATRIC IllV CLINIC by NORA M SHIVELY An Abstract of a thesis submitted in partial fulfillment of the requirements for the degree of Master of Arts Department of Anthropology College of Arts and Sciences University of South Florida December 2001 Major Professor : Michael Angrosino Ph. D v

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The issue of compliance (also referred to as adherence) has long been a closely scrutinized and highly debated issue within and among the medical, public health and anthropological communities Adherence is defined most often as '1he degree to which behavior coincides with medical or health advice" (Catz et al. 1999 : 362). The IDV/ AIDS epidemic has recently been addressed with the introduction of antiretroviral combination drug therapies (i e drug cocktails"), a situation that has heightened the concern regarding patient compliance Research and analysis in the area of compliance has typically focussed on the practice of medication-taking. Many studies have been completed to examine patients' adherence to prescribed drug regimens and to suggest recommendations for improving or enhancing the patients ability to better follow physicians instructions and approved treatment guidelines. Medicine public health, and anthropology have often taken very different approaches in the examination process due to diverse and often antithetical perspectives on the role and value of compliance in health care and health-seeking behaviors This thesis attempts to analyze a different and heretofore less thoroughly examined component of compliance within the mv I AIDS arena : appointment-keeping practices The research was conducted at the University of South Florida (USF) College of Medicine Department of Pediatrics and Children s Medical Services (CMS) Infectious Disease Clinic in Tampa, Florida Four one-on-one semi-structured, in-depth interviews and twenty-two surveys were conducted with parents, caregivers, and guardians from this clinic The final analysis yielded a clear description ofthe beliefs and attitudes about appointment-keeping practices of a small sample of the caregiver population It highlights the supports that enable and the barriers that inhibit caregivers from keeping their children s m e dical appointments Based on this VI

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research, it appears that the vast majority of the caregivers, surveyed and interviewed have a clear understanding of the importance of attending appointments and the role it plays in keeping on top ofthe progression of the disease There also seems to be a very strong indication that almost all caregivers believe that keeping their children's appointments is necessary and contributes to the health of their children The lack of understanding therefore, appears to exist between the physician/medical staff and the caregiver on what is the best way to address the care and treatment of the disease Abstract Approved: ___ ____ Major Professor : Michael Angros'fno, Ph D Professor, Department of Anthropology Date Approved: _:_:. _::___,_ ______ Vll

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Chapter One Introduction The issue of compliance (also referred to as adherence) has long been a closely scrutinized and highly debated issue within and among the medical public health and anthropological communities Adherence is defined most often as "the degree to which behavior coincides with medical or health advice (Catz et al. 1999 : 362) The HIV/AIDS epidemic has recently been addressed with the introduction of antiretroviral combination drug therapies (i. e "drug cocktails"), a situation that has heightened the concern regarding patient compliance Research and analysis in the area of compliance has typically focussed on the practice of medication-taking due to possible drug resistance as related to non-compliance and issues of cost-effectiveness Many studies have been completed to examine patients' adherence to prescribed drug regimens and to suggest recommendations for improving or enhancing the patients ability to better follow physicians instructions and approved treatment guidelines Medicine, public health, and anthropology have often taken very different approaches in the examination process due to diverse and often antithetical perspectives on the role and value of compliance in health care and health-seeking behaviors This thesis attempts to analyze a different and heretofore less thoroughly examined component of compliance within the HIV I AIDS arena : appointment-keeping practices My approach is basically anthropological although I integrate tenets of both the medical and public health perspectives as well. 1

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The research was conducted at the University of South Florida (USF) College of Medicine Department ofPediatrics and Children's Medical Services (CMS) Infectious Disease Clinic located in Tampa, Florida This clinic has been serving the IDV -infected pediatric population in Hillsborough County and surrounding areas for over fifteen years. The USF/CMS Program presently serves approximately 247 IDV-infected and -exposed infants children and young adults in Tampa, St. Petersburg, Sarasota, Naples and Fort Meyers The clinic in Tampa is the largest of the five and serves the majority of children I have been serving at the Tampa clinic as the Long Term Follow Up (LTFU) Coordinator for the Florida Family AIDS Network (FAN) since April 1997 My primary function has been to identify perinatally exposed children born to IDV-infected mothers who received antiretroviral medications during pregnancy, labor and delivery and/or during the infant's first six weeks of life Once identified, the children are enrolled into the LTFU Program which recommends providing initial developmental evaluations and referral services for children at one year of age and subsequent follow up consisting of the following : a phone administered developmental history and physical examination and, a quality of life assessment annually until age twenty-one years The LTFU Coordinator position was originally housed at United Cerebral Palsy (UCP) of Tampa Bay and was relocated to the USF College of Public Health Florida Health Information Center in July 1999 The LTFU Coordinator works in conjunction with the USF/CMS Pediatric Infectious Disease Clinic in Tampa as well as with the USF All Children s Hospital Pediatric Allergy and Immunology Clinic in St. Petersburg 2

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Prior to accepting the LTFU Coordinator position with the Florida Family AIDS Network (FAN) I served as the Program Director for a drop-in, day respite care program for HIV / AIDS-infected and -affected infants, children and youth in Tampa This position allowed me to establish in-depth, trusting relationships with many of the parents and guardians of these children prior to having a more clinical relationship with them These relationships proved to be valuable assets during the data collection process Over the course of the past several years the incidence of missed appointments (commonly referred to among the clinic staff as the "No Show" rate) has been anecdotally observed to average about 33% to 50%, particularly among the patient population with which the L TFU Coordinator is required to interact. Many presumptions on the part of the clinic staff have been made regarding the possible causes of missed appointments Very little research exists examining this phenomenon from the parent/caregiver/guardian perspective It was the combination of these factors that led to the formulation of this thesis topic My research was designed to utilize quantitative and qualitative measures to evaluate from the parent/caregiver / guardian perspective both the beliefs, attitudes and factors that enhance one's ability and/or increase one's desire to attend his / her child's appointment and those that prevent, deter or inhibit one from keeping his/her child's appointment. The original study design included an evaluation of the clinic staff perspective on caregivers beliefs and attitudes regarding appointment keeping through the use of self-administered questionnaires and in-depth interviews The questionnaires were administered to each member of the staff, and two in-depth interviews will be conducted at a later date Due to constraints of time and financial 3

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resources, these data will be utilized in a follow-up study as a comparative analysis in relationship to the caregiver perspective The caregiver population is characterized by minimal variation in regard to demographics education level of caregivers, and socio-economic status Therefore, the causes of non-compliance reflect an intricate, complex process that includes beliefs attitudes, customs, perceptions, and traditions. In addition, the internal processes are embedded in macro-level issues such as poverty, inadequate education, instability in home environments, violence, racism, and cultural biases The research presented here was conducted as part of my master's internship during the spring and summer semesters of2001 My internship / thesis supervisor was Dr. Patricia Emmanuel, an Assistant Professor in the USF College of Medicine and the Medical Director of the USF Pediatric Infectious Disease clinic Dr. Emmanuel and I have been colleagues and associates for almost seven years We have co-authored two abstracts about the work we are presently doing in the clinic both of which we presented at the National Institutes of Health (Nlli) and the Center for Disease Control (CDC) during January and August of 1999, respectively. We have written several grant applications together and have recently been awarded an Nlli grant to fund an Adolescent Medical Trials Unit for HIV-infected adolescents in the Tampa Bay area Dr. Emmanuel was instrumental in developing the focus of the internship itself. The findings will be presented to the sponsoring agency USF College of Medicine Department of Pediatrics, upon completion. The FAN Program, through which I am presently employed, anticipates that a published document will be forthcoming upon completion and acceptance of this research by the USF Graduate Program 4

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I used the following types of data collection methods to gather the necessary information required to provide a thorough, individual and contextual description : Semi-structured one-on-one interviews ; Surveys; Participant observation; and, Document and literature review Four one-on-one interviews and 22 surveys were conducted with parents, caregivers and guardians The number of interviews and surveys conducted was dependent on available time and resources to fund the necessary items such as tapes, transcription costs, printing of materials, client incentives, and mileage reimbursement (if required) for clients I was unable to conduct more interviews and surveys because of time and resource availability constraints The necessary IRB application for an expedited review of an observational study was submitted and approved through the Behavioral and Social Science division of the Department of Sponsored Research at USF Dr. Michael Angrosino my advisor and committee chair is named as the Principal Investigator and Dr. Patricia Emmanuel as the Co-Investigator I am listed as the Study Coordinator No names have been utilized in the final presentation of the data analysis in order to protect the confidentiality of the clients and the anonymity of the providers The final analysis yielded a clear description of the beliefs and attitudes about appointment-keeping practices of a small sample of the client population from this particular clinic setting It highlights the supports that enable and the barriers that inhibit patients from keeping their medical appointments The data that this internship/thesis 5

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provided might be useful as an evaluative tool for the clinic as well as for other clinics similar to the one under study They might also provide feedback for clients that could assist them in how to address those barriers that inhibit them from keeping their appointments and how to enhance those supports which enable them to improve access to care for their children Local planning bodies that are instrumental in making decisions regarding resource allocation and service prioritization, such as the Ryan White Care Council and the Health Councils of West Central Florida, might find these results useful in addressing some of the larger-scale barriers which inhibit access to primary care services among this segment of the mv -impacted population Finally the findings indicate areas for additional research, more in depth analysis and possible case studies 6

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Chapter Two Literature Review The initial literature review for this thesis began with a keyword search using various databases and search engines, such as Web Luis, Elsevier First Search, Ovid Medline PubMed and Eureka The keywords used were appointment-keeping", "compliance", "non-compliance" and "adherence". Articles and abstracts dealing with IDV/AIDS were preferentially selected, yet a few of those examining other chronic diseases, as well as pediatric and adolescent outpatient care were included for comparison purposes There appeared to be a great deal written on the aforementioned topics in the medical and public health literature yet relative little information was found regarding these areas in the social science (i e ., anthropology sociology) journals Medicine public health and anthropology each focus on particular aspects of adherence and compliance as they relate to individual, health seeking behavior, health care provision, health economics critical analysis of physician-patient interaction, and the political economy of health. Each discipline contributes a distinctive perspective yet there is overlap among the three The search was limited almost exclusively to journal articles abstracts, and texts that had been published after January I 1980. There exists a large volume of literature published on this topic particularly in the medical arena, prior to this date but since the subject under investigation in this particular study is appointment-keeping practices among the pediatric IDV/AIDS-exposed population, this investigator chose to limit the search to items written after the discovery" ofiDV/AIDS 7

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It is well established in the medical literature that the first cases ofillV/ AIDS were reported in a Morbidity and Mortality Weekly Review (MMWR) article in 1980 In the Medical Literature Medicine, public health, and anthropology have their own particular ways of conceptualizing the issue of adherence and the ways in which it might be "improved or "enhanced "Adherence and "compliance were often used interchangeably throughout the medical literature with just a few exceptions. Compliance was distinguished from adherence in one text as an overall evaluation of adherence" accounting for "the threshold of therapy necessary for effectiveness (Mehta, Moore and Graham 1997 : 1665) Adherence is defined most often as the degree to which behavior coincides with medical or health advice" (Catz et al. 1999 : 362) The very definition of adherence provided in several of the studies indicates a relationship that is predominantly one-sided i e the patient adapts his/her behavior to coincide with medical advice. This position implies that the medical advice is "correct or right and that it is in the patient's best int e rest to follow the advice of the medical practitioner One article, though, did point out that the patient s decision not to accept medical advice may be quite reasonable and that 'there is an increasing awareness that physicians can sometimes be wrong and that on occasion, their instructions are best ignored (Braker Kirscht and Becker 1984 : 259) Most of the literature in the medical journals that relates to adherence and compliance particularly in the HIV/AIDS field deals with medication-taking althou g h appointment-keeping is being more closely examined as a fundamental aspect of adherence (Catz et al 1999 : 362) The medical literatu r e seems to have reached a consensus that non-compliance for individuals with chronic diseases is approximately 8

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50% for both medication-taking and appointment-keeping (DiMatteo, Lepper, and Croghan 2000 : 2102; Eraker, Kirscht, and Becker 1984 : 258; Macharia et al. 1992:1816; Singh 1996 : 262). There is also a general perception that adherence is "good" and non adherence is "bad," as much of the literature referred to the problematic nature of non adherence Missed appointments '\vaste health service resources" (Andrews et al. 1990 : 192), "create inefficiencies for provider and clerical staff'' (Deyo and Inui 1980 : 1146), are an "obstacle to the provision of effective health care" (Macharia et al. 1992 : 1813) and "a costly drain of staff time and funds" (Clerici et al. 1996:97S). Non attendance also has serious consequences for clinical trial research including possible erroneous interpretation of data, increased rate of undetected illnesses and greater potential for other biases (Deyo and Inui 1980: 1146; Eraker, Kirscht, and Becker 1984 : 258) An individual patient "may seriously compromise the effectiveness of his/her care "by failing to regularly attend" appointments (Catz et al 1999 : 362) Many of the studies focused on identifying predictors of non-adherence, including demographic characteristics such as age, gender race/ethnicity, education level and socio-economic status. One study indicates that the manner in which an individual acts when initially contacted by phone to set up a clinical research study appointment can serve as a strong predictor, i e., a practitioner can reasonably establish a likelihood with which this patient will attend his/her appointment. The individual is given "credit" if he/she appears to be "interested, responsible (checked calendar, etc ), friendly, accepted participation and made appropriate inquiries about the study "Credit" is deducted if he/she demonstrates "apathetic acceptance loud background noise, frequent interruptions, difficult to contact or reluctant acceptance (Clerici et al. 1996 : 97S-98S) 9

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A sec0nd study of ways to reduce broken appointments referenced "quantitative methods for estimating each patient's likelihood of attending" (Deyo and Inui 1980 : 1153) Other factors or characteristics such as disease status (Catz et al. 1999:371 ; Singh et al. 1996 : 266-267), levels of perceived social support (Catz et al. 1999:371; Eraker, Kirscht, and Becker 1984 : 264; Mehta, Moore, and Graham 1997: 1667; Wells, McDiarmid, and Bayatpour 1990: 119), depression (DiMatteo Lepper, and Croghan 2000: 160; Singh et al. 1996 : 264-266; Wells McDiarmid and Bayatpour 1990 : 119), stress and emotional and psychological functioning (Mehta, Moore, and Graham 1997 : 1666-1667; Wells McDiarmid and Bayatpour 1990 : 119) were identified as potential predictors of adherence. The referenced articles indicated that those individuals in more advanced stages of their illness tended to be more compliant than those who were newly diagnosed and not experiencing significant maladaptive effects of the disease Those with higher levels of perceived social support were indicated as more likely to be compliant. Contrary, those who were experiencing higher levels of depression and stress and who tended to have lower levels of emotional and psychological functioning were less likely to be compliant Each of these studies appeared to be trying to identify predictors so as to establish a "profile" of the patient who would likely be non-compliant. Often times this also led to the formulation of appropriate interventions targeted towards those individuals who had a significant number of the characteristics identified as predictors of non-compliance A few medical studies examined different components of the Health Belief Model (HBM), such as perceived level of susceptibility severity, costs/barriers and benefits, as 10

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well as patient attitudes and beliefs (Deyo and Inui 1980: 1149; Eraker, Kirscht and Becker 1984; Irwin, Millstein, and Ellen 1993 : 21-22; Wells, McDiarmid, and Bayatpour 1990 : 120) Such studies aimed to identify ways in which to "modify" or "alter'' (Eraker, Kirscht, and Becker 1984 : 260) the perceptions, beliefs, and attitudes of the patient in order to assist him/her in becoming more compliant with the advice of the medical practitioner These studies, however, also scrutinized a patient s experience of care and the ways in which the physician-patient relationship played a significant role in determining a patient's desire or willingness to follow medical advice (Eraker, Kirscht, and Becker 1984 ; Freed et al 1998; Irwin Millstein, and Ellen 1993 ; Wells, McDiarmid, and Bayatpour 1990). Those patients who had developed a deeper sense oftrust with the medical staff and felt as though they were treated with respect and caring were more likely to be compliant. It is worth noting that in the medical literature reviewed there was one study (Andrews et al. 1990) which stood apart from all of the others in its orientation, methodology findings and recommendations The study was particularly relevant to this project because it was "based on the children s outpatient department of a large inner city district hospital" (two general pediatric clinics) examining the reasons for missed appointments It utilized in-depth, semistructured interviews with one or both of the parents and had a relatively small sample size of forty-six. "The approach sought the respondent s own account of events and experiences" and it clearly demonstrated that "the decision not to attend was usually a conscious and complex one influenced by many factors .'' Findings indicated '1hat a substantial proportion (if not a majority) of children who do not attend can be expected to have health problems warranting further medical 11

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attention." Noteworthy as well is that the study referenced above was conducted through a hospital associated with the University of Birmingham, England and the authors were multidisciplinary team members from the Institute of Child Health (1), the Department of Social Policy and Social Work (2) and the Department of Pediatrics (1). (Andrews et al. 1990 : 192-195) The medical literature can primarily be divided into three main areas of interest in the issue of non-compliance : possible predictors (Catz et al. 1999 ; Clerici et al. 1996 ; Irwin, Millstein and Ellen 1993 ; Mehta, Moore, and Graham 1997 ; Wells McDiarmid, and Bayatpour 1990) ; determinants and causes (Andrews et al. 1990 ; Deyo and Inui 1980 ; DiMatteo, Lepper, and Croghan 2000; Eraker, Kirscht, and Becker 1984; Freed et al. 1998 ; Kissinger et al 1994 ; Singh et al 1996; Weidle et al 1998) ; and, recommended ways in which to reduce non-compliance i e improve compliance (Cegala and Marinelli 2000 ; Macharia et al. 1 992; Newell, Bowman, and Cockburn 1999 ; Volmink, Matchaba, and Garner 2000) Several studies examine predictive factors of adherence and compliance, with particular attention to appointment-keep ing practices These studies however, offer differing opinions on the impact of demographic characteristics such as age, gender, race/ethnicity and socio-economic status Several sources cited lower socio-economic status (or social class) as having a direct correlation to lower adherence (Deyo and Inui 1980 : 1149 ; Irwin, Millstein and Ellen 19 93 : 21 ; Mehta, Moore, and Graham 1997 : 1666) among their sample populations Other sources indicate higher levels of non-compliance associated with younger age and minority status (Catz et al. 1 999 : 370; Deyo and Inui 1980 : 1149; 12

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Kissinger et al. 1994 : 21; Singh et al. 1996 : 267) In one study it was noted that it is generally agreed that associations between demographic factors and adherence are generally inconsistent (Catz et al. 1999 : 371) A second article indicated that socio demographic factors, though undoubtedly influencing health decisions, are less amenable to intervention and therefore were left out of the discussion (Eraker Kirscht, and Becker 1984 : 264) Given the medical community's serious concern for the negative impact that failed appointments" (Deyo and Inui 1980 : 114 7) have on the provision and reception of proper medical care it is not surprising that many ofthe interventions recommended in the medical literature for reducing non-compliance with appointment-keeping are patient-focused" (Newell Bowman, and Cockburn 1999 : 540-544) and/or "patient directed strategies (Eraker, Kirscht and Becker 1984 : 264-265), geared toward chan g in g patients behaviors and health beliefs Some of the types of interventions utilized or recommended include the following : reminder letters and/or telephone calls (Deyo and Inui 1980 : 1153; Irwin, Millstein, and Ellen 1993 : 22-23; Macharia et al. 1992 : 1814-1815 ; Newell, Bowman and Cockburn 1999 : 540 ; Matchaba, and Garner 2000 : 1348); patient communication skills training (Cegala and Marinelli 2000 : 1806) ; incentives e g., food financial etc (Deyo and Inui 1980 : 1153 ; Eraker Kirscht and Becker 1984 : 262 ; Newell, Bowman, and Cockburn 1999 : 540 ; Volmink Matchaba, and Garner 2000: 1348) ; patient education programs (Deyo and Inui 1980 : 1153) ; and 13

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contracting with patients (Braker, Kirscht, and Becker 1984 : 262; Macharia et al. 1992 : 1815) Only one of the studies reviewed included any reference to ethics and the importance of respecting the right of the patient to choose not to comply with physician directives (Eraker, Kirscht, and Becker 1984 : 264-265) This study concludes by indicating that any efforts at behavior change should be nonforceful and that if a patient chooses not to comply it is improper to try to modify their behavior In the Public Health Literature The public health literature overlaps the medical to a certain extent. The medical definition of compliance is also used in the public health literature, where there is some agreement that compliance is "the extent to which a person's behavior .. coincides with medical or health advice" (Becker and Rosenstock 1984 : 175) Approaches to defining compliance vary greatly (Becker and Rosenstock 1984 : 199-200) and have included "a quantitative assessment of the degree to which a regimen was followed," "a categorical definition," or "an index of compliance with multiple behaviors at times including knowledge and attitude scores (Dunbar 1979:41-43) The public health literature tends to utilize the Health Belief Model (HBM) more extensively than does the medical in the examination of compliance, although there has been an increasing use of this theoretical perspective within the medical literature as more medical practitioners become trained in public health theory and practice The HBM consists of the following dimensions : ( 1) perceived susceptibility; (2) perceived severity; (3) perceived benefits ; and, (4) perceived barriers (Janz and Becker 1984 : 2) Proponents of the HBM contend that, with regard to compliance, demographic characteristics have "demonstrated weak correlations" (Becker 14

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and Rosenstock 1984: 183) and "might in any given instance, affect the individual's perception and thus indirectly influence health-related behavior" (Janz and Becker 1984 :3). Several public health studies of compliance focus on appointment-keeping practices They discuss however, different strategies that may be employed to intervene in one or more of the four dimensions Intervention strategies are often focused on modifying or enhancing "beliefs about threat to health (perceived susceptibility to, and severity of, illness) and about the efficacy or benefits of recommended preventive or curative actions as well as knowledge of nature and rationale of the specific recommendations that are made" (Alcalay and Bell 2000 :11; Becker and Rosenstock 1984 : 201) In a prospective study examining mothers health attitudes and beliefs and their appointment-keeping practices for their children in a pediatric clinic Becker et al. (1977 : 134) suggest that one set of factors towards which efforts to change utilization patterns might profitably be directed is the individual's health attitudes and beliefs." Mirotznik et al. (1998) tested "the utility ofHBM for explaining appointment keeping for prevention and for the management of a chronic disease and 'found three HBM dimensions general health motivation, perceived severity and costs to be uniquely associated in the theoretically predicted direction with appointment-keeping for a chronic disease In addition to patient-focused interventions, staff training (including for the physician) which emphasized both compliance difficulties experienced by patients .. and possible strategies for altering patient beliefs and behaviors based on the HBM' was recommended (Becker 1979 : 18-19). Becker and Rosenstock (1984: 200-201) speak of "the consumer s 'right' to non-compliance as well as the obligation of the health care practitioner to assist the "motivated clients or population who wish to act on the 15

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knowledge by giving instruction in those behavioral skills necessary to satisfy those motives. A study published in the Journal of Community Health in 1993 attempted to identify predictors of compliance with appointment-keeping without using the HBM found "that health-care-delivery related factors are at least as important as patient-related factors (Keife and Harrison 1993 : 282) One criticism of the HBM is that it is limited to accounting for as much of the variance in individuals' health-related behaviors as can be explained by their attitudes and beliefs (Janz and Becker 1984 : 44) This conclusion neglects macro-level forces such as economic cultural political social and environmental factors which are outside of the scope of the individual which may greatly influence health behaviors Alcalay and Bell (2000 : 11) suggest that "other models and approaches can be used in conjunction with the HBM to account for how social cultural and economic factors influence people's responses t o health recommendations." Other theories cited include theory of reasoned action, theory of planned behavior social learning theory stages of change model information processing paradigm, transtheoretical model consumer information processing model diffusion of innovations theory community organization model theories of organizational change and the social ecological approach (Alcalay and Bell2000: 12-24 ; Glanz and Rimer 1995 : 17-30). Through the combination of theories, social marketin g has emerged within the public health arena as "a process to develop, implement evaluate and control behavior change programs by creating and maintaining exchanges (Glanz and Rimer 1995 : 33) Utilizing both individual-level theories and community-level theories social marketing attempts to 16

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"change people" and change the environment (Glanz and Rimer 1995:41) in order to "modify health-related behavior" (Becker and Rosenstock 1984 : 202) In the Anthropological Literature When compared to the medical or public health arenas the anthropological literature contains very little regarding the issues of non-compliance and non-adherence and it tends to emphasize critical examinations of the "historical construction of noncompliance (Lerner 1997 : 1423; Trostle 1988 : 1300-1306) and critical discussion of the premise that non-compliance is deviant behavior" and that patients ''fail to comply, intentionally or unintentionally, because they are ignorant or forgetful" (Conrad 1985 : 30 ; Donovan and Blake 1992 : 507 ; Garrity 1981 : 215 ; Ross 1991:89) The concept of compliance is often associated with the dominance of (Western) biomedicine (Donovan and Blake 1992 : 507) with historical roots in physician control, having been leading to the assumption of''the need for patients to slavishly follow physicians' orders (Lerner 1997 : 1428 ; see also Trostle 1988 : 1301-1303) Medical anthropology is typically more interested in examining the effects of differing "cultural expectations on the clinical encounter (Lerner 1997 : 1428) and it "places studies of doctors and patients in the context of comparative studies ofmedical systems (Good and Good 2000a : 244) Frameworks such as "explanatory models" of illness (Kleinman and Seeman 2000:236237) and "clinical narratives (Good and Good 2000a : 245-248 2000b:382-383) place the concept and experience of compliance in a context that connects it to multi-level influences including microand macro-level forces such as economic, cultural political social and environmental factors 17

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Arthur Kleinman has in numerous studies used Explanatory Models (EMs) of illness to "assess the influence of cultural and social factors upon a given episode of sickness (Kleinman and Seeman 2000 : 236) In his work entitled Writing at the Margin : Discourse between Anthropology and Medicine, Kleinman ( 1995 : 126) states, Most patients with chronic illness, which by definition cannot be cured but must be endured, do not comply entirely with their doctor s prescription There is little doubt that this 'weapon of the weak may at times be one of the few forms of resistance to medical authority that is feasible, even though it is often self-defeating Kleinman ( 1995 : 195) illustrates through ethnographic descriptions the individual s experience of"illness and care, alternative medicine, the local community context of policy and practice, deviance and the myriad of problems ordinary and extreme that are constantly passing into and out ofbiomedical authorization." The EM "includes notions of etiology expected course and predicted outcome and ideas about appropriate treatment (Katon and Kleinman 1981:259 ; Kleinman 1986 : 84-85 ; Kleinman and Seeman 2000 : 236) Noncompliance can often arise from "differing perceptions of illness goals of treatment and conflicts between the physician and patient The ability of the physician to "negotiate a shared understanding with that patient as to the requirements and possibilities of treatment is facilitated through a more profound understanding of the patient's EM ofhis/her illness (Kleinman and Seeman 2000:237) "The objective is neither to dominate patients nor convert them to the physician's value orientation, but to enlist the patient as a therapeutic ally and provide care for problems patients regard as important in ways that patients desire (Katon and Kleinman 1981:262). 18

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Mary-Jo Delvecchio Good and Byron J. Good have written extensively on the analytic approach tenned "clinical narratives," defined as stories created by physicians, for and with patients over time about the course of disease and the progression of therapeutic activities" (Good and Good 2000a : 246-248) They contend that early in the education of the medical practitioner he or she learns "a distinctive set of narrative practices" including techniques for chart dictation, presenting patients to other doctors," patient interviews, and oral presentations such as grand rounds (Good and Good 2000b : 382) These clinical narratives "are about the progression of therapeutic activities and their impact on the patient experience ... They establish a therapeutic plot for patients, as a course of treatment is set in action, and they read the unfolding medical plot' detennined by disease process and patient response (Good and Good 2000b : 383) ''Patients are also critical 'readers and 'interpreters of treatment plots, directing-often in collaboration with their clinicians how the shifts in therapeutic course will affect their lives (Good and Good 2000a : 246) In this way, noncompliance on the part of the patient is a distinct way in which the clinical narrative is re-written, at times choosing to step out of a professionally devised 'plot'" (Good and Good 2000a : 246) The anthropological literature, particularly within the fields of critical medical anthropology (c m a.) and political economy of health (p e h ) is replete with references to structural barriers to care i e., power relations race ethnicity socioeconomic variables, etc. According to the literature these structural barriers significantly impact an individual's and frequently an entire sub-population s ability to access, receive and participate in health care, therefore indirectly affecting compliance Repeatedly throughout the c m a and p e h literature there are examples illustrating that illness itself 19

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is socially produced and is rooted in social, political and economic inequalities (Baer 1997; Farmer 1999; Keshavjee 1996; Morgan 1987; Morsy 1996 ; Scheper-Hughes 1990 ; Singer 1989 ; Whiteford 1996). The production of illness is often examined at an international and, at times, national level with implications that this theory can also be applied at the local community level. The literature calls upon medical anthropologists to be critical of the unequal, hegemonic power structures that perpetuate the dominance of the Western, biomedical model ofhealthcare and the capitalistic infrastructures that continue to produce illness This theoretical perspective is often considered oppositional and antagonistic to the theoretical and analytic frameworks of the medical and public health communities Conclusion The concept of compliance or adherence has its roots in a predominantly one sided, uneven relationship of power, control, and dominance Much research has been done over the past several decades across a variety of disciplines to investigate the reasons behind non-compliant behavior and how it might be modified. Considerably less research has been done to assess the reasons for noncompliance from the patient perspective Medicine, public health, and anthropology have all examined this phenomenon in different ways with contrasting outcomes and recommendations Until recently there has been minimal exchange across disciplines regarding common ground and potential methods of exchange and collaboration The medical anthropologist working in a clinical setting today is challenged to integrate these perspectives, methodologies, and analytical frameworks in a manner that can produce meaningful findings and conclusions that speak to patients, practitioners, and 20

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researchers in an interpretative language These findings must be firmly rooted in anthropological theory and praxis yet allow for those from other arenas to hear the resulting message in a way that invites and permits self-reflection and reorientation toward the provision of reciprocal, mutual cooperative care Each of the three fields has made and is continuing to make valuable contributions Synthesizing their strengths and bringing them into a harmonious dialogue with one another so as to allow for each one's voice to be enhanced by the other, is an important, and greatly needed function of research that intends to inform and reform a fragmented system of care This method of investigation can be a reflective model of how the relationship between patient and practitioner might be realigned so that the healing and therapeutic benefits of medicine and healthcare can be availed to all involved in the discussion 21

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Chapter Three Methods The Setting The internship/field research on which this thesis is based was carried out between September 2000 and August 2001 under the direction and supervision of Dr. Michael Angrosino, Graduate Advisor and Committee Chair, and Dr. Patricia Emmanuel, Medical Director at the University of South Florida (USF) / Children's Medical Services (CMS) Pediatric Infectious Disease Clinic in Tampa, Florida. The building houses not only the sub-specialty clinics (such as the IllY/AIDS clinic) but USF General Pediatrics as well. The pediatric IllY/AIDS clinic runs on one day a week (Wednesdays) from 8 : 30 a.m to 4 :30p. m The pediatric IllY program is the primary provider oflllY/AIDS care to infants and children in Hillsborough County and surrounding areas It is a collaborative effort between CMS, a statewide Title Y program 1 and the USF College of Medicine Department ofPediatrics The clinical team is a multi-disciplinary staff with extensive, combined experience in the field of pediatric IllY/ AIDS. The staff consists of the following individuals: Pediatric Infectious Disease Specialist Medical Director; Infectious Disease Specialist; N urse Coordinator, Program Director; Social Worker; Perinatal Nurse Coordinator; 1 Each state has a Title V age n cy whose mission is to provide medical care for infants and children with chronic medical conditions and/or disabilities. Individuals served through this program must meet certain income eligibility guidelines 22

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Nurse Case Manager (2) ; Nurse Practitioner ; Adherence Educator ; Nutritionist ; Audiologist ; Data Manager ; Child Life Specialist ; Long Term Follow Up Coordinator ; Developmental Psychologists ; Phlebotomist ; Secretary ; and Administrative Ass i stant. The USF / CMS Pediatric Clinic is located adjacent to Tampa General Hospital, one of Tampa s largest hospitals and providers of ind i gent care. The surrounding area ofDavis Island is a very affluent high rent section of the south Tampa district. It is accessible by public transportation (bus route), and there is safe, free parking in a garage connected to the clinic building The Pediatric HIV/ AIDS Clinic is primarily funded through Ryan White Title I and IV funds2 CMS, and Medicaid Data C ollect ion The purpose and i nitial study design w as drafted and submitted to Dr. Michael Angrosino Committee Chair and Dr. Linda Whiteford, Department Chair for rev iew and approval in early September 2000 In late October 2000 an IRB application and adult informed consent were submitted for expedited review to the University of South Florida (USF) Office of Research, Div i sion ofResearch Compliance Institutional Review Boards to be presented at the November meeting Certain conditions of approval were identified and pending clarification, approval for protocol IRB #99 332 entitled 2 The Ryan White CARE Act was established in 1990 by the federal government to provide medical care and support services for illV-infected individuals 23

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" Descriptive analysis of appointment-keeping activities in the USF/CMS pediatric IDV clinic" was granted in December 2000 for a one-year period Initially, the study design included a participant selection process based on the following steps: a formula for classifying caregivers as either ''Regular Attenders" or ''Non-Regular Attenders" was established; 75 patients were randomly selected from the current patient roster list; patient charts were reviewed; caregivers were classified into one of the two categories based on appointment keeping practices over a 24-month period from January 1, 1999 to December 31, 2000; and, ten to twelve caregivers were to be surveyed and two to three caregivers were to be interviewed from each group based on constraints of time and financial resources. The criteria for classification of participants into the categories of''Regular Attenders" and ''Non-Regular Attenders was established as follows: Regular Attenders attended 80% or more of the scheduled appointments within a period of24 months; Non-Regular Attenders did not attended a minimum of 80% of scheduled appointments within a period of24 months The 24-month period reviewed was from January 1, 1999 through December 31, 2000 [Note : Originally the period of review was to be 12 months, January 1 through December 31, 2000 but there were many patients who only had one or two appointments scheduled during that time period.] A "kept" appointment, calculated at 1.0, is one that was scheduled by the staff and the individual came and received the entire array of medical visit services (nutrition, doctor examination, labs, etc. ) A "partially kept" appointment, calculated at 0 75, is one which was scheduled and the 24

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individual came but did not receive the entire array of medical services because the individual left before everything was completed A "rescheduled" appointment calculated at 0 50, is one which the individual called either the day of the appointment or before and indicated that they were not going to able to attend and scheduled a new date and time for the appointment. A "cancelled" appointment calculated at 0 25, is one which the individual called either the day of the appointment or before and indicated that they were not going to able to attend and did not schedule a new date and time for the appointment A ''No Show," calculated at 0 0 is one that the individual did not call and did not show up for the appointment The total percentage of kept appointments was calculated by adding up the total kept appointments, based on the values above, and dividing it by the total number of appointments scheduled. This formula was reviewed and approved by the Nurse Coordinator/Program Director and the Perinatal Nurse Coordinator The Nurse Coordinator/Program Director has been working with the pediatric IDV clinic for over thirteen years and the Perinatal Nurse Coordinator was the initial member of the clinic team to be assigned to specifically provide nurse case management to the IDV-infected, pregnant women and the IDV-exposed (CDC classification 'E ) infants more than four years ago Seventy-five patients were randomly selected from the current patient roster using the random number tables provided in Appendix E of the text entitled Basic Statistics for the Health Sciences (Kuzma 1998:295-297) Each patient has two charts open simultaneously during the time he / she is receiving care in the pediatric IDV clinic : a USF chart and a CMS chart The USF charts were reviewed instead of the CMS charts because not all patients who had received care in the clinic during the designated time 25

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were enrolled in CMS Charts were reviewed and each appointment was assigned a quantitative value based on the criteria above Visits to the acute care clinic were recorded including diagnosis and reason for visit but not assigned a value so as to establish a potential correlation between number of acute visits and number of appointments kept with the HIV clinic. A percentage of kept appointments was calculated and patients were classified into one of the two categories The data indicated an unusually high number of"Regular Attenders (versus "Non-Regular Attenders ) than what was normally observed in the clinic practice. After further review and discussion with the medical team, I concluded that the information recorded in the charts was not accurate The team members reported that the actual recording of attending, rescheduling, canceling and not attending appointments had only been accurately kept since January 1 2001. I therefore decided that a prospective convenience sample of individuals coming to clinic would be used and that the classification criteria and random selection method would not be used at all. Subjects were invited to participate based on whether or not the individual caregiver had brought the patient to more than one prior appointment with the clinic in the past twelve months The survey was administered during clinic days between May 15 and July 15, 2001. The clinic staffwould review the day s schedule identify those who met the criteria, and would refer them to the Study Coordinator Any of the members of the interdisciplinary staff could refer a caregiver A survey instrument for evaluating attitudes and beliefs of caregivers regarding appointment-keeping in the pediatric HIV clinic was adapted from a survey that had been used for a previous study evaluating the same items for medication-taking in an adult HIV clinic at the Veteran's Administration (VA) hospital in Tampa, Florida Permis s ion 26

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to use the survey was g iven by the Principal Investigator on the VA study (Powell-Cope, phone and e-mail c orrespondence in April 2001 ) The survey was changed so as to focus on appointment-keeping based on factors that had been identified in previous studies and on information provided by caregivers and staff from the clinic My academic advisor and the core members of the clinic staff reviewed the survey Necessary revisions and editions were made based on staff recommendations The survey was pre tested by a volunteer who was demographically reflective of the majority of the clinic the purpose of the pre-test was to assess the approximate length of time it would take to complete and the l e vel of understandability Revisions were once again made based on recommendations from the volunteer. A copy of the survey instrument is included in Appendix A. The survey was administered during clinic days between May 15 and July 15, 2001. It took an average of twenty-five minutes for a participant to complete the survey includin g the informed consent process The survey was administered in the clinic on clinic days and the participant was given a $5 00 gift certificate to McDonald s restaurant in return for his/her participation in the study Subjects were invited to participate based on whether or not the individual caregiver had brought the patient to more than one prior appointment with the clinic in the past twelve months The survey was administered either in the examining room in the clinic if time permitted or in a small conference room on the floor where the administrative offices were located (in the same building) The main topics covered on the survey were self-reported appointment-keeping practices over the past twelve months feelings about keeping appointments, things that make it easier or harder to keep appointments feelings beliefs and attitudes about 27

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keeping appointments and basic demographic infonnation. The first page of the survey was a rating scale (from always to never) filled out by the referring clinic staff person, or the staff person most familiar with the participant, ranking the caregiver on how consistent he/she is in keeping scheduled appointments This section was filled out after the participant had completed the survey After all the surveys had been completed, the USF and the CMS charts for the patients enrolled in the study were reviewed for a twelve-month period prior to the date the survey was administered Only appointments with the pediatric HIV clinic were reviewed Each review included a list of scheduled appointments, appointments which had been canceled, rescheduled or skipped (a "No Show") A list was compiled using both sets of charts In most, but not all, circumstances there was little discrepancy between the two sets of charts. These data were recorded for use as a comparison to what the caregiver had self-reported about his/her appointment-keeping practices and what the staff person had reported about the caregiver on the first page of the survey. In addition to the surveys, four in-depth, semi-structured personal interviews (Bernard 1995 : 209) were completed to provide a qualitative complement to the quantitative data collected (Miller 1992 : 159-161) In order to obtain a cross section of viewpoints from the various caregivers who attend this clinic, one mother (not pregnant), one grandmother, one foster mother, and one pregnant mother were selected The main topics covered during the interviews were the following : caregiver's perception of attendance practices; reasons for not attending ; beliefs about the severity of the child s illness; 28

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beliefs about the child's susceptibility to further illness; things that make it harder or-easier to come to appointments ; beliefs about keeping appointments; and recommendations on ways to make it easier for caregivers to keep appointments The demographic information collected for the interviews was the same as that collected in the survey and it was recorded in written form The goal of the interview was to capture the participant's own experience of and thoughts about keeping their child(ren)'s appointments with the pediatric HIV clinic A copy of the interview questions is included in Appendix B. The average length of time for the interview to be completed including the informed consent process was forty-five minutes The interview was scheduled to take place in the location most convenient to the participant, e.g., the conference room in the clinic's administrative offices, the participant's home, a local restaurant etc The participant was given a $15 gift certificate to the grocery store ofher preference, and a light meal if the interview took place during a mealtime hour, as an incentive for agreeing to participate. The interviews were tape recorded, transcribed, and the content later coded and analyzed (Bernard 1995 : 360-365) Field notes of general observations were kept throughout the course of the entire process of conducting the research, beginning with the initial proposal, the protocol desi g n the IR.B application process the data collection and through the final data analysis The original study design included an evaluation ofthe clinic staff perspective on caregivers' beliefs and attitudes regarding appointment-keeping through the use of self-administered questionnaires and in-depth interviews The questionnaires were administered to each member of the staff, and two in depth interviews will be conducted 29

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at a later date Due to constraints of time and financial resources, these data will not be reported on here, but will be utilized in a follow-up study as a comparative analysis in relationship to the caregiver perspective Limitations of Study Systematic bias may have been introduced into the sample selection process given that those individuals who did not attend their appointments during the period of May 15 through July 15, 2001 were not eligible for inclusion The sample population may therefore have been more heavily weighted in favor of those who do not have as great a difficulty attending their appointments as those who do have difficulty. Moreover individuals who were not able to speak fluent English were not eligible, given that the Study Coordinator was unable to get the informed consent and survey translated into other languages. Caregivers who predominantly spoke Spanish and Creole were not invited to participate, potentially eliminating the evaluation of language and possible cultural beliefs and practices among this segment of the patient population as factors. It should also be noted that the Study Coordinator who administered the survey was a long time member of the pediatric HIV/ AIDS service provider network in the Tampa community Certain participants were potentially more willing to volunteer based on a trust level that had been established with this staff person There exists a possibility that caregivers who were newer to the clinic, and to the HIV community in Tampa, may have been more reluctant to participate than those who had been coming to the clinic and had been involved in the local IDV care system for a longer period of time Since the surveys were administered in the clinic setting, it is also possible that the participants may have given answers that were more favorable toward the clinic while under-reporting the 30

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negative reasons for not attending appointments The potential error in chart recordings has been previously noted Data Analysis Once all the surveys had been administered the Study Coordinator set up a data analysis table in SPSS based on the caregiver survey All variables were defined and a blank copy of the entire table was printed out. Additional variables based on appointment-keeping practices recorded in the charts were included The Study Coordinator manually entered all the answers from the surveys into the table These answers were then added to the data analysis tabl e that had been previously established in SPSS with the assistance of a colleague from the clinic The Study Coordinator ran the summary tables of frequencies and other descriptive statistics A consultant statistician was hired to run the higher l e vel statistical analysis such as multivariate tests within subjects analysis of variance (ANOVA), paired samples tests, the P e arson Correlation test, and a Reliability Analysis-Scale (Cronbach's Alpha) The transcribed interviews were carefully reviewed after the survey data analysis had been completed Results of the interviews that either supported or contradicted the survey findings were highlighted Interview data that presented findings unrelated to the survey findings were also noted. This same process was conducted for participant observation data subsequent to the analysis ofthe survey and interview data The survey data, the interview data, and general participant observation recordings were compared and compiled to form an overall picture of the caregiver perspective on appointment keeping 31

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Chapter Four Findings Demographic Characteristics of Survey Participants Twenty-two participants completed the basic survey (N=22) and four completed the in-depth, semi-structured interview (N=4). Figure 1 indicates the ages of the survey participants, i.e the caregive rs. Figure 1: Caregivers' Ages Frequency N=22 Age Range munder 30 31-40 yrs 041-50 yrs 1.2:10ver51 yrs Of the 22 survey participants, four were males and 18 were females The main racial or ethnic group is shown in Table 1 (see below): Table 1 : Main Racial or Ethnic Group Racial or Ethnic Group Frequency Black (not Hispanic) 12 White (not Hispanic) 6 Hispanic 4 N =22 32

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As illustrated in Figure 2, the household income for the survey participants varied Figure 2: Household Income 3 5 $4,999 or less $5,000-$9,999 0 $10,000-$19,999 II $20,000-$29,999 $40,000-$49,999 $50,000-$59,999 Out of the 22 survey participan t s, eight were working full-time, five part-time two were unemployed laid off or looking for work, four were retired, disabled or no longer working and three were k eeping house Education level varied among survey participants with the majority having their highest year of school completed between grades 9 through 12 as shown in Figure 3 (see below) Figure 3: Highest Year of School Completed = Post -graduate 0 .... -= 1st-4th yr coUege = "'C '0 Grades 9-12 '43 ... cu Grades 1-8 0 2 4 6 8 10 12 14 16 Frequency (N=22) 33

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Out of the 22 survey participants 10 were biological parents (mother / father), six were aunts or uncles four were grandparents one was an adoptive parent and one was a foster parent. Household sizes ranged from two to six or more persons with the numbers rather evenly distributed between the groupings as illustrated in Figure 4 (see below) : Frequency N=22 5 4 3 2 1 f} Figure 4: Household Size .. Number of Persons in Household BTwo .Three DFour mFive Six or more The majority of the respondents either lived with their spouse (n =l2) or alone with their children (n = 7) while respondents indicated liv ing with their partner and on e with family members (other than spouse) All except one participant (n = 21) indicated they lived either in an apartment or a private home ; the one participant indicated he/she lived in a foster home The participants health status ranged from Fair to Excellent with almost half(n=IO) reporting it as "Very Good" (see Figure 5 below) : Figure 5: Caregivers' Health Status (N=22) 4 4 4 10 34 Excellent very Good OGood IJFair

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The risk gro u p whic h best described the responde n ts mode of expos u re to the HIV (AIDS) virus was HIVinfected'' for 12 participants, "Heterosexual partner ofHIV+ person f o r nine a nd "Other" for one participa nt. Statistical Analysis of Demographic Characteristics Fou r demograp h ic c h aracteristics were s e lected for examination o f p o ssib l e statistically significant correlation wit h the percentage of kept appointments Percent of kept appointments was determined by a review of the medical charts (both USF and CMS ) over t h e course of the 12=m o n t h period i mm ediate l y p r eceding the administration of the survey The chart rati n g was used for purposes of statistical analysis because it is the least subjective of the three ratings, i.e ., the client/self, the staff/provider, and the c h art T h e c h aracte r istics w er e t h e f oll ow in g : hig h est year of school com plete d (i.e. education l evel), caregiver s age, work status (e.g fulh time, unemployed, etc. ), and relatio n s hip to chi l d (e. g parent grand p arent, etc ) Pearso n Correlations wer e calc u lated and both highest year of school completed and caregiver's age were not statistical l y sig n ificantly correlated to percentage of kept appointments (see Table 2 below) : T bl 2 P a e earson rre tton cauon e ge Co 1a Edu. LevlA %ofkep t Highest year a ppo in tm ents -of sc hool Caregive r's c hart comj>leted age %ofkept Pearso n Corre l ation 1.000 141 079 Sig (2-tailed) 530 .726 N 22 22 22 Highest year of Pearson Correlation 1 4 1 1.000 348 school completed Sig (2-tailed) 530 -.113 N 22 22 22 Caregiver's age Pearson Correlation 079 348 1.000 Sig. (2-tailed) .726 113 -N 22 22 22 35

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For statistical analysis ofthe characteristics listed as "work status" and "relationship to child," correlation could not be performed because the variables were qualitative Analysis of variance (ANOVA) was attempted but the number per cell was less than the minimum required, i.e., there was a frequency of only one or two in some of the subgroups. Quantitative analysis by ANOVA could not be run because the total sample size (N=22) was too small. The sample size had been broken down into six or more subgroups for of the questions and the number or responses per cell was below the minimum required Ratings of Percent of Kept Appointments (Client / Self, Stciff!Provider Chart) The client/self rating scale was calculated using the figures listed in the table on Page 2, Question #1, Section A of the survey (see Appendix A). The client/caregiver was asked to recall how many appointments were scheduled for his/her child(ren) to attend in the last three months, six months and year He/she was also asked to recall the number of appointments out ofthose scheduled that they actually attended in each of the three time periods. The total percentage of kept appointments within the previous 12 months as rated by the client/caregiver him/herself was calculated from this table. The results are listed in Table 3. (Note: Two of the 22 participants were unable to recall the number of scheduled and actually attended appointments for the stated time period, so the total number of valid responses for this section was 20.) 2 Table 3: Client/SelfRatings (N=2 ) Frequency Percent Valid .67 2 9 1 75 2 9.1 .80 l 4.5 .86 l 4.5 .92 2 9.1 1.00 12 54.5 Total 20 90.9 36

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The first page of the survey was a staffi'provider rating scale. On this scale, the staff person who referred the caregiver to the Study Coordinator was asked to estimate the percentage of appointments the client had kept over the past 12 months This staff person may have been the nutritionist, nurse case manager, data manager, nurse coordinator/program director, or social worker. The scale was listed on a range from "Always (100%) to "Never" (0%) and the staff person was asked to choose the rating he/she felt best described the caregiver's appointment-keeping practices in the past year More than half of the clients referred by the staff were classified as always keeping their appointments and none of them were classified as never keeping their appointments. Table 4: Provider Ratings (N=22) Frequency Valid Percent Valid Always (100%) 12 54.5 Usually (75%) 7 31.8 Sometimes (500/o) 1 1 Rarely (25%) 2 9 1 Never(O%) 0 0 Total 22 100.0 The process for calculating the chart rating of percent of kept appointments is described in detail in the 'Methods" section (Chapter Three, page 24 paragraph 1) and the results are reflected below in Table 5 a e tmg = T bl 5 Chart Ra (N 22) Frequency Percent Valid 29 1 4.5 .50 1 4 5 .70 1 4 5 .71 2 9.1 75 1 4.5 77 1 4.5 .83 1 4.5 86 1 4.5 90 1 4.5 .91 2 9 1 1.00 10 45.5 Total 22 100 0 37

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Statistical Analysis For comparison purposes the mean and standard deviation for each of the ratings, (client/self, staff/provider and chart), were calculated The results are shown in Table 6 T bl 6 De a e scnptive s tatlstics Client/ Staff/C N Mean Std Deviation % of kept appointments-client 20 9170 1208 % of kept appointments staff 22 8295 2364 % of kept appointments chart 22 .8564 1888 Valid N (listwise) 20 The descriptive statistics illustrated above indicate that the average rating for percent of appointments kept in each area is as follows : "Staff'= 83 .0%; Chart = 85 6%; and "Client" = 91.7%. When within-subjects factors were examined using multivariate tests, within subjects analysis ofvariance (ANOVA), the difference between the ratings was determined to be statistically significant. The significance level using the multivariate tests was calculated to be 017 (see Table 7 below) Table 7 Multivariate Tests Hypothesis Effect Value F df Errordf Sig. RATER Pillai s Trace 3 62 5 114 2 000 18 000 017 Wilks Lamlxia 638 5 114 2 .000 18.000 017 Hotelling s Trace 568 5 114 2 .000 18 000 017 Roy s Largest Root .568 5 114 2 .000 18 000 .017 When paired t-tests, i e paired samples tests, were run between each of the possible pairs, the data indicated statistically significant differences between the staff/provider rating and the client/selfrating (significance level of. Ol9) as well as the chart rating and the client/self rating (significance level of .014) There was not a statistically significant difference between the chart rating and the staff/provider rating The outcomes of this analy s is are listed in Table 8 38

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a e arr amp1es est Tbl8P"edS 1 T Sig. elf (2-tailed) Pair % of kept appointments -staff 1 % of kept appointments chart 21 .487 Pair % of kept appointrnents -staff 2 % of kept appointments client 19 019 Pair % of kept appointrnents chart 3 % of kept a p pointments client 19 .014 This suggests that the stafti'provider ratings and the chart ratings are more closely aligned to each another than to the client/self ratings This ma y be attributable to one of many factors including the fact that the providers are the ones who record what is kept in the chart Also the clients may have over reported their percentage of kept appointments because the survey was administered in the clinic setting The final explanation might be in the interpretation of what classifies a missed appointment, which varied between provider chart and client. Survey R espo ns e s The survey responses were divided into four main groups : demographic characteristics feelings/beliefs / attitudes life factors and intervent i ons Results of the demographic characteristics of the respondents has already been reported (see pa g es 3135) Feelings/beliefs/attitudes include opinions regarding the individual experience of attending appointments (page 7 Appendix A) and the impact of keeping appointments on the child s health and well being Life factors include access to transportation, life activit y level and the care g iver s general state of well being (including stress factors) Interventions include reminder calls and cards from staff, use of calendar / organizer and individual reminders 3 9

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Feelings ; Beliefs Attitudes The responses for the section titled "Feelings About Keeping Your Child's Appointments (page 7, Appendix A) indicated that the majority of participants surveyed felt keeping their children's appointments was a "positive" experience. For almost each area listed, the predominant answer was extremely or slightly affirmative (see Table 9) Table 9 : Feelings about Appointment-Keeping (N=22) Frequency Percent Valid extremely good 21 95.5 extremely / slightly necessary 22 100. 0 extremely/sliglltly satisfying 2 1 95 5 extremely/slightly comfortable 19 86.3 extremely/slightly convenient 17 77. 2 extremely/slightly uplifting 16 72.7 extremely/slightly healthy 21 95.5 extremely/slightly pleasant 21 95 5 extremely/slightly under my control 18 81.8 extremely/slightly up to me 21 95.5 Approximately one-third of the respondents found keeping every one of their children's appointments as recommended by the clinic staff for the next year either slightly or extremely difficult as well as slightly or extremely stressful (31 8% and 36.4%, respectively) Pearson Correlations were calculated and analysis of participants' responses reported ease/difficulty of keeping appointments was not statistically significantly correlated to percentage of kept appointments (see Table 10 below) : Table 10: Pearson orre auon-IC c 1 Di.ffi ult/E asy %ofkept Keeping every appointments a ppt for next chart year %ofkept Pearson Corre l ation 1.000 .298 appointments Sig. (2-tailed) -. 178 chart N 22 22 Keeping every appt Pearson Correlation 298 1.000 for next year Sig. (2-tailed) 178 -difficult/ easy N 22 22 40

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The majority of participa n ts surveyed felt keeping t h eir childre n s appointments had a "positive" effect o n their children s health/well being. The four questions examined whether or not the caregiver be l ieved that keeping his/her child(ren)'s appointments would keep the child from getting sick, hel p the chil d live longer make the child feel better an d keep the chil d healthy For each question, the most prevalent answe r s were extre mel y or slig htl y like ly, as o utl ined i n Tab l e 11. e e te tutu sa ut \ppomtmentee pmg Tabl 11 B 1' fs/A de bo A K = (N 22) Frequency Percent Vali d Kee ping amx will keep kid from getting sick extremely / slightly likelv 18 81.8 K eeping appt will help kid live longer extremelv/slildltlv likely 22 100 0 Keeping appt will make kid feel better extremely / slightly likely 20 90.9 Kee ping appt keep kid health}'_ extremely/slightly likely 21 95 5 Pearso n Corre l atio n s were calculated and analysis of participants' opinions on the impact of appoi n tment-kee p i n g on the child's hea l th/well being was not statistically significantly corre l ated to percentage ofkept appointmen t s (see Ta b le 12 b elow) : Table 12 Pearson Correlation Effect on Child s Health %ofkept appointme n ts -chart Keeping amx will keep Pearson Correlation 041 kid from getting sick Sig. (2-tailed) 861 N 21 Keepin g aptX will hel p Pearson Correlation 126 kid live longer Si g. (2-tailed) 577 N 22 Keeping amx keep ki d Pearson Correlation 120 health y Sig. (2-tailed) .606 N 21 Keeping amx will make Pearson Correlation .054 kid feel better Sig. (2-tailed) 821 N 20 41

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These four questions were combined to form a scale. A Cronbach's Alpha was calculated for this scale and the resulting Alpha equaled 1289. Pearson Correlations were calculated and this scale was not statistically significantly correlated to percentage of kept appointments as recorded in the medical charts (Pearson Correlation= 098 Sig = 664, N=22). Life Factors Life factors included questions regarding access to transportation, life activity level and the caregiver's general state ofwell being (including stress factors) Transportation. Transportation questions dealt primarily with access/use of a car, the bus a cab or getting a ride from another person (family member friend, etc ) for getting to and from the child s appointment and how often a caregiver had to use each mode of transportation and make transportation arrangements. Over 90% of the participants (n=20) responded that having a car would make it extremely or slightly easy to keep their children's appointments By contrast, 50% of the participants (n=ll) responded that having to take a cab would make it extremely or slightly difficult to keep their children's appointments More than two-thirds of the participants responded that having to get a ride from another person and having to take the bus would make it extremely or slightly difficult to keep their children's appointments (72. 7% and 86.4%, respectively) Pearson Correlations were calculated to examine the possible correlation between percent of appointments kept as recorded in the chart and how often or likely a participant was to use each of these modes oftransportation or make transportation arrangements to get to and from his/her child(ren)'s appointments (see Table 13) 42

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a e ears on T bl 13 P C If T orre a ton-ransportation %of kept appointments chart How often do you have Pearson Correlation .442* a car? Sig. (2-tailed) .039 N 22 How often do you get Pearson Corre l ation .248 a ride? Sig (2-tailed) .266 N 22 How often do you take Pearson Correlation -.442* the bus? Sig (2-tailed) .039 N 22 How often do you take Pearson Correlation -.229 a cab? Sig (2-tailed) .305 N 22 Keeping appt means Pearson Correlation -.375 anng transportation Sig. (2-tailed) 086 N 22 There was a statistically significantly negative correlation between reported use of a bus and percent of appointments kept. There was a statistically significant positive correlation between how often a person has his/her own car for a typical appointment and the percent of appointments kept. The questions regarding how often or likely a caregiver had to use a car, the bus, a cab and arrange transportation were combined to form a scale. A Cronbach' s Alpha was calculated for this scale and the resulting Alpha equaled 8806 Pearson Correlations were calculated and a statistically significantly negative correlation was found between this scale and the percentage of kept appointments as recorded in the medical charts (Pearson Correlation = -.430* Sig. = 046, N=22). Note: The question regarding how often one has his/her own car, i.e. "How often do you have your own car?" was reversed to "How often do you not have your own car?'' The variable was reversed so that it would reflect 43

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the same direction as the other variables Having a car is a positive variable (i. e ., it measures access to transportation), but taking a cab or bus or having to arrange transportation are negative variables (i e it measures lack of access to transportation) Life Activity Level. Life factor questions dealt primarily with issues around work and school schedules, taking time off, business of life, and having to arrange care for other children Slightly more than one-third (36.4%) of the participants (n=8) responded that their work or school schedule made it extremely or slightly difficult to keep their children s appointments Almost half(45 5%) of the participants (n=IO) responded that keeping their children s appointments would mean having to take time off from work would be extremely or slightly l i kely Less then one-fourth (18 2%) of the participants (n=4) responded that being busy makes it extremely or slightly difficult to keep their children s appointments and that keeping their appointments would mean it would be extremely or slightly likely they would have to find someone to watch their children Pearson Correlations were calculated to examine the possible correlation between percent of appointments kept as recorded in the chart and how often or likely a participant was to have each of these occur in relat i onship to keeping his/her child(ren)'s appointments (see Table 14) 44

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T bl a e 14: Pearson CorrelationLife Activitv Level %of kept -appointments chart How demanding is work Pearson Correlation 220 or school? Sig. (2-tailed) .325 N 22 How busy is your Pearson Correlation 144 life? Sig (2-tailed) .523 N 22 Keeping appt means Pearson Correlation -.188 finding someone to Sig (2-tailed) .401 watch kids N 22 Keeping appt means Pearson Correlation 053 taking time off Sig. (2-tailed) 814 N 22 The questions regarding how demanding a participant's work or school schedule is, how busy a participant's life is and how likely or unlikely a participant is to have to take time off from work were combined to form a scale. A Cronbach's Alpha was calculated for this scale and the resulting Alpha equaled 2985 Pearson Correlations were calculated and this scale was not statistically significantly correlated to percentage of kept appointments as recorded in the medical charts (Pearson Correlation= 146 Sig = 518 N=22) Caregiver's General State of Well Being. Caregiver's general state of well being questions dealt primarily with being sick, feeling depressed and not liking going to the doctor 50% of the participants (n=11) indicated that being sick makes it extremely or slightly difficult to keep their children's appointments Over two-thirds (68 2%) ofthe participants (n= 15) indicated that feeling depressed makes it extremely or slightly difficult to keep their children's appointments Less than one-fourth (18 2%) of the 45

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participants (n=4) indicated that not liking going to the doctor makes it slightly difficult to keep their children s appointments Pearson Correlations were c alculated to examine the possible correlation between percent of appointments kept as recorded in the chart and how often or strongly a participant was to experience each of these in his / her life ( see Table 15 below) Table 15 Pearson CorrelationState of W e ll Being How often do y ou feel Pearson Correlation sick ? Sig (2-tailed) N How often do y ou feel Pearson Correlation depressed ? Sig. (2-tailed) N How much do you like Pearson Correlation going to the doctor? Sig. (2-tailed) N %ofkept appointmentschart 084 711 22 2 3 6 291 22 058 799 22 These three questions were combined to form a scale A Cronbach s Alpha was calculated for this scale and the resulting Alpha equaled .4058 Pearson Correlations were calculated and this scale was not statistically significantly correlated to percentage of kept appointments as recorded i n the medical charts (Pearson Correlation= 152 Sig. = .501, N=22) Note: The question regarding how much one likes going to the doctor i .e. "How much do you like going to the doctor ?" was reversed to "How much do you not like going to the doctor? The reason the variable was reversed was so that it would reflect the same direction as the other v ariables Liking going to the doctor is a positive var i able, but feeling depressed and "feeling sick are negative variables 46

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Interventions The questions regarding interventions dealt primarily with the impact of reminder calls and cards from the staff, using a calendar or organizer to keep track of appointments and having someone (friend family member, spouse, etc.) to remind the participant about his / her child(ren)'s appointments The majority of participants indicated that getting a call (95 5%), getting a rem i nder card (90 .9'l/o), using a calendar or organizer (86 3%) and having someone to remind them (77.3%) made it extremely or slightly easy to keep their children's appointments Pearson Correlations were calculated to examine the possible correlation between percent of appointments kept as recorded in the chart and how often each of these occurred in relationship to keeping appointments (see Table 16 below). Table 16 Pearson CorrelationInterventions %ofkept appointments chart How often do you get a Pearson Correlation .045 call? Sig. (2-tailed) 841 N 22 How often do you get a Pearson Correlation 035 card? Sig. (2-tailed) .878 N 22 How often do you use a Pearson Correlation .245 calendar? Sig (2 tailed) 273 N 22 How often do you have Pearson Correlation 116 someone to remind you ? Sig. (2-tailed) 608 N 22 These four questions were combined to form a scale A Cronbach's Alpha was calculated for this scale and the resulting Alpha equaled 6015 Pearson Correlations 47

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were calculated and this scale was not statistically significantly correlated to percentage of kept appointments as recorded in the medical charts (Pearson Correlation = 172, Sig = .443, N=22) Relating the Findings to the Literature Review Although a great deal of the statistical analysis done on the survey responses was not consistent with many of the findings outlined in the medical and public health literature, the sample size utilized for this particular research was much too small to make any definitive correlations per say The one area where there did exist a statistically significant correlation to percent ofkept appointments, i e access (or lack of access) to modes of transportation, was consistent with the findings in the aforementioned literature. 48

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Chapter Five Interpretation ofF indings Demographic Characteristics of Caregiver s Despite the lack of statistical significance of various demographic characteristics in correlation to percentage of appointments kept as recorded in the chart, certain areas warrant a closer examination in light of information obtained through participant observation and in depth interviews Age and health status have been observed to be important factors in a caregiver's ability to keep scheduled appointments. Some of the caregivers who are responsible for bringing the children into the clinic for their appointments are more mature (over 50 years of age) and experience health problems of their own In many cases these older caregivers are grandparents who have become the guardians of the children because the biological parents are either deceased or otherwise incapable of caring for their children themselves One of the individuals interviewed indicated the primary reason she missed her grandchild's appointments was her own poor state of health When asked about some of the reasons she might miss an appointment she replied "I might be sick ... like I be telling my [spouse] sometimes sometimes I hurt, but I got to keep going cause ifl stop waiting on them .. see I'm the one that take Julius 1 to the doctor." 1 The name s of the children, caregivers and staff have been changed to protect the confidentiality of the information obtained during the interviews and the individuals' identities 49

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Beliefs regarding the efficacy of health care also vary in relationship to the age and ethnicity of the caregiver. For many of the older caregivers, faith and spirituality play an integral role in how they perceive the seriousness of the disease and the level of trust they place in medical advice given by established providers of medical care (e g ., doctors nurses) A caregiver might seek out medical advice from another trusted source including a friend, a family member or even, in certain cases, a member of one's religious community One interviewee when asked if she believed if the child s health condition was serious, replied, Yeah serious, yes it is, yeah because you on pills, but a lot ofthings that I ain't got use to .. .in this disposition I learn cause I got a mother in Christ, she always keep me on things in medicine that she already learn. So I call and confide and she give me a lot of details, a lot of things, medication, what they mean and you know Another of the interviewees expressed her opinion about differences among beliefs held by certain ethnic groups regarding medical care and treatment in this manner : For African-American women ... it has nothing to do with the clinic. It's just our culture I wasn t raised on medication I wasn't taken to the doctor every month .. .I kind of went when one of my limbs were hanging off . There was a lot of home remedies ... We didn t go to the doctors a lot so it s all new ... Like it took me getting very, very ill and saying, 'Oh God, I'm not ready to die. I'm going to go to the doctor.' It took my kids going in and out of the hospital, bouncing back and forth, in order for me to understand you really need to see the doctor and you really need to take the medication. The number of persons living in the household, particularly one in which there are other children requiring care, was a factor in a caregiver's ability to keep appointments One interviewee stated it in this manner," ... when I was younger [I] use to remember everything but now ... when you get so many different doctors' appointments ... because I 50

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have [several] children and my [spouse] that goes to the doctor all the time .. so that makes it kind of difficult. Ratings of Percent of Kept Appointments ( C lient / Se lf, Staff/ Provid e r C hart) As indicated in the previous chapter there was a significant difference between the client/self rating and both the staff/provider and chart ratings During the administration of the survey it was noted that when the participant was originally recalling the number of missed appointments he/she often remarked that an appointment was not missed if he / she called to reschedule or cancel. The perception of what constitutes a missed appointment differed among the staff/provider the client and the definition used in the formula for calculating the percentage of missed appointments as recorded in the medical charts There was also a notable difference among the providers themselves as to the meaning of the categories "always, "usually," sometimes," and rarely," even though there was a numerical percentage assigned to each one. One staff person, who was responsible for referring six of the twenty-two survey participants repeatedly stated that no one ever always mak e s appointments 100 % of the time Each staff person offered a different opinion about whether and why the caregiver kept his/her appointments Each of the medical chart is frequently managed by several staff persons with consequent variation in the manner in which a missed rescheduled or canceled appointment is recorded The survey was administered either in the clinic examining room or in one of the administrative offices; these settings may have biased the caregiver into over-reporting his / her number of kept appointments. Even though the participants were told repeatedly that their answers were confidential and that the results would be presented in an aggregate form there may have been concern on th e part of the caregiver 51

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to account for the missed appointments The effect of this concern, coupled with feelings of guilt and shame about reporting missed appointments was described by one interviewee in this way : Because they think that if they say the wrong thing they going to lose their children ... if they say the wrong thing it's going to be held against them .. cause you want to be ... known as a good mom You deal with a lot of guilt and shame cause you know that you infected your child ... and me, myself, I infected [my] kids so I deal with a lot of guilt and easily intimidated, you know. Feelings/Beliefs / Attitudes Almost all the participants indicated that they believed keeping their children's appointments was both extremely good and necessary The overall experience of attending the appointments was generally portrayed as a positive one, apart from certain factors that increase the difficulty and stress level associated with keeping the appointments When the people I interviewed spoke about how and why keeping their children s appointments contributed to their children's health, they emphasized the benefits of monitoring the progression ofthe disease One interviewee put it this way : Why is it important. .. because Julius medication, Julius' doctors and I like to know what they think, what ... what's the next step, what's the next move because you never know unless you do it through the doctor what the next move is, what they going to put Julius on, you never know unless you go to the doctor so I want to be up on it. Another respondent explained: Cause I want to know how they're doing ... I mean, they look pretty healthy and ... but I still want to know how they re doing and if there's anything wrong that I'm not seeing ... Cause that's the only way you're going to know ifthey still doing well or not .. and, urn, if you can just stay on top of everything that's going on with them it's a huge help. That's how I look at it. 52

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A third expressed it in these words: I mean, I feel that's what keeps Monica healthy . taking care of that so ... and being able to make Monica' s appointments and being able to have her labs done and to see ... where she stands today compared to where she stood maybe two or three months ago. And I want to keep on top of things to give Monica the best benefit and keep her healthy The caregivers believe overwhelmingly that keeping their children s appointments helps them to stay on top of the disease and its development, and yet each one also spoke to the unpredictable nature ofHIV/ AIDS One interviewee said, "I mean ... I see the virus and it's so sneaky and it's like any given moment they get sick, you know." A second interviewee spoke to the issue in this manner: Because of different, uh, like the different illnesses, the opportunists that Monica has could be very, very serious with her. And even though Monica's ... viral load is under control, it could just ... go at any minute we don't know. We really don't know. She can be doing good one minute and then maybe an hour later she's not doing so well ... I think we are buying time for our kids We're buying time Keeping an appointment was stressful for many because they have to deal with multiple staff people in a single visit, and have to have their children's blood drawn They also reported embarrassment about trying to manage unruly or misbehaving children in a clinic (i e ., public) setting. Some of the comments on these areas included the following : ... sometimes I get uncomfortable with the interns ... because I feel like I'm being exposed without having the right to say it s okay ... it's just like brought you in there and you're like .. it 'sjust very uncomfortable and having to answer all kind of personal questions makes it even more uncomfortable when you're talking about your kids ... when I come to the doctor I want to come in and I want to find out how my kids are doing and not have so many people in and out . it's because what has happened in the past is that you got those giving me instructions and because so many people giving me so many instructions that the most important stuff! lose or forget. 53

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If they get blood out of Julius one time, that's going to get that little bit because h e will freeze up on you ... yes he will and they ain't no more getting blood They can hang it up .. One time that's it. They know it and they be trying to strain Julius pull him down, hold him down, no. If they don t get no blood then they don t get none afterwards . That's r i ght if they don t get none one time that's it. I'm being for real It' s hard for me now It still is I don t . because my boy's o kay with getting his blood drawn and that's just the weirdest thing to me .. is like how can a child at [so few] years old be so okay with having this done .. it's not something that s okay I'm still not okay with that I hated to bring Tyrone in the clinic I would sit up in the room and cry to the doctor cause I was so embarrassed that he couldn t keep still ... jumping around and basically about to hurt himself. .. and I just had a hard time dealing with it in public and then having to bring him to the lllV clinic . it was just like i t never wan t to end and you can t discipline them .. and you really don t want t o but you just want them to calm down. Overall the caregivers believe they are g ettin g the best care possibl e for their children in the clinic and that they are treated with care and respect. All of the interviewees indicated that they would not take their children anywhere else even if another clinic existed The level of trust and confidence in the doctors and other staff was expressed in very strong terms . .. but as far as thei r care is concerned, I mean, Dr. Jones2 is very good with them. She does come in and takes her time with them. If they don t have it ... one way or another they ll figure out a way to get i f for me to give i t to them, especially when it comes to the medication I think they get excellent care I wouldn t want anybod y else to see my kids I'm not just saying that .. I really wouldn't .. my kids were very very sick kids .. They were very very sick kids and all of them are thriving well. . If I had to move out of state or something like that, which .. that s one of the reasons I won't move is because of my doctors for my children . . I think we're very open and if l ike Dr. Jones, ifl have any questions I ask her and she alwa y s has an answer for me and too .. I feel like she s up front and she s honest and I just feel l ike ... Monica s got the best medical care there is That s the way I feel about the situation 2 The names of the childr e n, caregivers and staff have been changed to pro tect the confidentiality of the information obtained during the interviews and the individuals identities 54

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... because the love they show They show a lot oflove there and they are some caring people and I love them, yes I do I tell them that, yes I do ... When you get there you get the welcome .. the warm feeling and they don't have no bad day Ifthey do they don t show it.. but I love them . I don't think that I would trust Julius with nobody else ... It's simple, I rather for him to be where he at cause those are beautiful people They are very beautiful. Yes they are and I trust Julius with them with his life, yep Life Factors Transportation was the single strongest factor identified by both survey and interview participants as having an impact on one's ability to attend appointments Having one s own car was statistically significantly correlated to percent of kept appointments as recorded in the medical charts a finding confirmed in the interviews One interviewee stated, Yeah, it' s always a lot different when you got your own car cause you can always go at the last minute but either way it go it's like you still made it to the appointments and stuff Another said ... so having a car really helps cause I get them up and then I can take them back to school ... Now I can take them right back to school so they don't miss so many days of school out of the year. Issues with buses and Medicaid cabs were spoken to directly in each interview Yeah, because I have been without a car and I've struggled with the Medicaid cabs and them not coming or having the guy to ride 15 miles out of where I'm going and come all the way back again and spending two or three hours waiting for them to come back Now that can discourage you from not wanting to come to a doctor s appointment. .. I had to be up at 5 : 00 in the morning and your appointment isn't until 10 : 00 ... Ifl didn't have transportation and what I have seen with other parents with this cab service it would be very difficult to get to and from doctors appointments .. I have seen other parents that didn't have transportation have to call several times to wait for hours and hours Like I met this one person that I know she was waiting for six hours for a medical transport to come back and get her and her child ... it would make it difficult because you would have to get your own cab or take a bus ... to meet the buses that would be very difficult to handle 55

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... when it comes to my kids I pretty much keep their appointments and stuff unless it's like a transportation problem or something .. Like ifl don't have bus fare or if.my car isn't working right or ifl can't find a ride and if I thought I had asked someone if they was going to take me ... sometimes if you don't have your own way all the time you got to get a ride and you don't want your ride to necessarily leave because they be like, oh well, that s a good little ways or whatever, and you don't want them to come in cause you don't want them to know what it's all about. Julius may be done missed twice out of his appointments but other than that ... sometimes it be transportation Sometimes Miss Mary get em a cab but I have to have a car seat so now I got a car seat . cause they can't get me a cab without a car seat. Some survey participants identified life activity level factors (e. g., having a demanding work or school schedule having to take time off from work, being busy and having to find someone to care for the other children) as ones that make it more difficult to keep one' s nevertheless these items were only marginally referenced in the interviews When one interviewee was asked to list the reasons she might miss an appointment, she replied, Sometimes work, sometimes I forget, ... sometimes it might be an insurance problem." When a different interviewee was asked if there was anything the clinic staff could do differently to make it easier for her to come to her child's appointments she replied : Sometimes if you real busy during the week and it's like if you don't necessarily have transportation then clinic on the weekend would be a good thing because some of those mothers have a little bit better time .. still it would be a lot easier for some parents because ... they have to get a lot of stuff done during business hours Monday through Friday .. or they could keep open a little bit later in the afternoon so that way if people would be having a job or something they could still get their babies to those appointments Feelings of depression and of not liking going to the doctor did not appear extremely relevant to the interview participants as factors that prevented them from keeping their appointments. One interviewee stated, "I get down too ... but I have to keep going ... I got 56

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to keep going, can't stop ... some people just give up hope but I don t give up hope because God brought me this far to keep me going and He showed me different ways to keep myself motivated, keep myself in Spirit. Interventions The vast majority of the survey participants indicated that getting a call and/or a card from the staff to remind them about their appointments made it easier for them to keep them a conclusion corroborated in the in-depth interviews as well. Some of the comments from the interviewees on this subject were as follows: Well, they stay on top of everything Like now they call me like the day before the appointment ... Miss Beatrice3 send me a reminder appointment card in the mail probably a week before and then the day before she call me at work and remind me .. it is a big help cause I tend to forget In my case Miss Helen really was pretty good on helping me keep up with those cause she ll call "Oh, Diana, we haven't seen you in the clinic in a while" and then she found me she called me, "Could you come in today?" So it was like Miss Helen was pretty good at helping me remember ... They'll call or have somebody deliver a message ... they remind me if they didn t do nothing but leave a message on the answering machine But I don't think they really have sent me a letter though, but I know they call. "Stephanie, this is Miss Helen You know you have an appointment this day." Or either she will get Marilyn to tell me, ''Miss Helen says you have an appointment set for such and such day Or like she did you, "Remind Candace that she has an appointment Thursday at 1:00 ." So it's like, yeah, they pretty good at reminding me .. The use of a calendar or organizer to track appointments was also mentioned in the indepth interviews One interviewee indicated she used both a carry-around organizer and 3 The names of the children caregivers and staff have been changed to protect the confidentiality of the information obtained during the interviews and the individuals identities 57

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a calendar on her wall in her home to track the appointments," .. but I remember cause I put them in this book right here ... yeah, I put it on the wall One interviewee called her organizer her "little bible and responded in the following manner : Well, ifl didn't write it down in my book .. I have to have an appointment book at all times and because of my schedule with other children it gets kind of hairy at times ... I can have my appointment book and that's what I go by I write in fact, if we go to a doctor s appointment and they say do you need a card I say no I have it written down in my book ... for doctors appointments you have to stay organized with an appointment book. And that's very critical is an appointment book The wallet-sized appointment cards that are given out in the clinic for the next appointment were not mentioned by either survey or interview respondents Many of the findings in the qualitative data, i e the in-depth interviews, reinforce the findings in the quantitative data i e the survey responses Several of the areas of significance that were highlighted through the interviews, such as feelings attitudes, and beliefs about keeping appointments, access (or lack of access) to transportation, use of reminder calls and calendars/organizers were congruent with the findings in the survey analysis The in-depth interview data obtained regarding the caregivers' perceptual differences and cultural experiences of illness and disease were in keeping with the anthropological literature as described in Chapter Two particularly the Explanatory Model and Clinical Narrative references 58

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Conclusions Chapter Six Conclusions and Recommendations There were multiple factors beliefs and attitudes highlighted through this research project as potential enablers and inhibitors of appointment-keeping for this particular sample population Certain strengths within both the caregiver / parent/guardian and the staff/provider populations were recognized and could be built upon in an effort to enhance the relationship between the two parties and to continue developing an even greater reciprocal level of respect and caring Certain areas of weakness or difficulty could be improved through targeted intervention as well There were items that may or may not be strengths or weaknesses but which, through recognition and acknowledgement, can enhance understanding between caregiver / parent/guardian and staff/provider. Strengths. One strongly held belief among both survey and interview participants was that keeping appointments was very important and highly valued. The interviews indicated a belief that by keeping their appointments the caregivers could maintain a greater sense of control over the virus and its progression, especially in light of their awareness of the unpred i ctable nature of the disease. The caregiver wants to be made aware of what is happening with the child and what course of action the medical staff thinks is the best way to maintain the child s health As one interviewee put it : 59

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Yeah, strive and see what the next move is It's just like playing checkers Yeah, what y ou next move is How y ou going ... y our strategy, your knowledge. You got tokeep that knowledge b r ain open cause you got to wonder what the next move. What the doctor going to give you, what the doctor goi ng to tell you what [the doctor's] next move going to be You don t know You got to be on you P s and Q s Essential to this cooperative relationship is the d e ep sense of trust the careg i vers have i n the medical staff. The beliefthat the medical staff respect love and care about them and their children was reiterated throughout the interviews as well as the affirmation of the exceptional level of medical care provided For example : They not with the bull, they serious people They think. They work. Dedicated, very dedicated and I love that about them Because they love to see the child improve and I like that about them They dedicated people very dedicated ... I love them with my heart, yes I do. A more tangible factor assisting the caregivers i n keeping their appointments was receiving a reminder phone call from the staff The use of a calendar or organizer was also helpful to many Areas of Difficulty Under the heading of demographic characteristics, there were three primary areas that were indicators of difficu l ty for the caregivers These may or may not be areas that can be targeted for intervention, but that may, nevertheless provide the medical staff with a greater understanding of perceptual differences. Firstly the i ssue of age predominantly for e l derly caregivers (often grandparents), highlighted the obvious influence of physical difficulties, as well as d i fferences in bel ief systems including the role of religious and/or spiritual beliefs and practices Cultural and ethnic differences in beliefs and practices regarding how and when medical care is to be utilized were recognized as potential barriers to accessing care in accordance with the prescribed recommendations of the medical community Large household size particularly ones i n 60

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which a single caregiver is primarily responsible for the care of many individuals, was also presented as an area of difficulty in regards to keeping appointments Instances where one individual is responsible for coordinating and keeping track of multiple appointments for several different household members can be overwhelming and lead to missing or rescheduling of appointments Perceptual differences between caregivers and the medical staff as to what classifies as a missed appointment were highlighted, as were reasons for possible under reporting of missed appointments on the part of the caregiver Feelings of fear, guilt and shame on the part of the biological parent play an integral role in how one approaches the medical care system and the medical community Three clinic practices were identified as potential sources of stress for the caregiver population: the interaction with multiple staff people, blood draws, and the management of unruly or misbehaving children Access to transportation (i e having one's own car) was clearly a factor that either enabled or inhibited appointment-keeping Potential conflicts between appointment times and work schedules or weekday commitments and obligations were marginally referenced as an area of difficulty Recommendations Each of these recommendations is made recognizing that there exist barriers for implementation such as limited budgets and staffthat vary from clinic to clinic. For the Staff/Providers. The following recommendations primarily originate from the data obtained in the in-depth interviews (see pages 47-52) Continued recognition and validation of the caregiver's desire to gain knowledge about the nature and progression of their child's disease on the part of the medical 61

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staff could enhance and strengthen the already cooperative and collaborative nature of this relationship As the caregiver feels more and more like an integral part of the "game", as he / she gains a greater sense of being in control of the choices being made regarding his/her child's care, the level oftrust will deepen between the individual and the medical staff The respect love and caring that the medical staff demonstrate to the caregivers and their children should continue to be a high priority and an essential part of the provision of care Along those lines, the high level of excellence in the medical treatment provided should be maintained Recognition on the part of the medical staff of the role of age and the issues and problems that this brings to the lives of the "older" caregivers, particularly the grandparents/guardians should be noted. One suggestion on the part of an interviewee was ... maybe there s a way that they [grandparents] can come a little earlier ... or get them out quicker." Being attentive to the health issues which the elderly caregiver faces and integrating in even a nominal way, inquiring about the health of the caregiver and making reasonable accommodations to enhance their general state of comfort could ameliorate some of their discomfort and fatigue Acknowledging the differences in beliefs and practices which exist between the caregivers and the medical staff, whether based on age, ethnicity, culture or religion, and validating the benefits and strengths of these belief systems might also improve communication and enhance interactions 62

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Cultural sensitivity (also known as cultural competency) training for the medical staff regarding these differences could be provided in order to educate and heighten their level of awareness of the influence of these factors Scaling down the number of different staff persons who are required to interact with the caregiver and patient for an average visit by prioritizing those medical and/or social services most needed would be of benefit. Interdisciplinary team meetings which would include case review needs assessment and prioritization of services prior to the cl i nic date might prevent duplication of questions being asked and reduce staff time in with the caregiver. When additional medical psychological or social services are deemed necessary prior to the visit review with the caregiver probably by phone the possibility of a longer visit and inquire if this is going to present a possible conflict or significant inconvenience In this way the caregiver is mentally and physically prepared for a longer and more intensive v isit and may have the opportunity to request that certain services be spaced out in their sch e duling to accommodate their needs For th e C lini c The followin g recommendat i ons originate from the data obtained through both the in-depth interviews (see pages 51-52, 54-56) and the surveys (see pages 38 -40, 45-46) Make adaptations to the blood draw process which would minimize psychological trauma and physical discomfort to both the child and caregiver. Have a separate room for drawing blood which has a child friendly environment (e g ., a television and VCR with funn y children s movies playing comfortable cushioned tables on 63

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which the children may recline and good lighting with decor that uses uplifting colors and comical murals) Have appropriately trained staff (e g ., child life specialist play therapist music therapist) assist the child in relaxing and provide activities, such as games, as a way to distract the child s thoughts away from the pain of the blood drawing process In an effort to address the issue of the child who is acting out utilize the child developmental psychologists on the team to assist the caregiver in developing appropriate techniques to deal with children s disruptive behaviors in the clinic setting Ideally, this would be done in a manner that causes the least amount of embarrassment or shame to the caregiver. When caregivers have more than one child with them and one of the children becomes disruptive, have the child life specialist remove the other child(ren) from the room and engage them in play activities in a separate setting, allowing the caregiver to focus his/her attention on the disruptive child Host a Saturday clinic once a month for those caregivers who are employed full-time, this might assist in addressing the work schedule conflicts Another possibility would be a late-afternoon/early-evening clinic once or twice a month that would provide extended clinic hours for those caregivers who have conflicts with daytime obligations Continued utilization of reminder phone calls and mailed appointment cards should be encouraged. Cards should be friendly and colorful, designed in such a way that the caregiver could post the card in a conspicuous location and not be worried about breach of confidentiality or accidental disclosure ofiDV I AIDS status 64

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The individual who is making the reminder phone call should be someone with whom the caregiver has on-going communication and has developed a sense of trust rather than a "stranger The value of the call for the caregiver is not just in getting a reminder but making a connection w ith an individual who is generally concerned with the health and well being of his / her child This too, might continue to enhance the trust and communication between the medical staff and the caregiver, allowing for important health-related information to be shared outside of the clinic visit Purchase calendars for the caregivers to hang in their homes These should be calendars that the caregivers would want to hang in their homes in a conspicuous location. Input from the caregivers on types and designs of calendars should be sought, being open to purchasing ones with a spiritual theme or a focus on nature, animals music travel, etc. The clinic could consider the use of stickers for the calendar which would indicate an appointment in a design that clearly indicated to the caregiver that there was a doctor's visit, but if viewed by another individual might not indicate that it was for the subspecialty IDV / AIDS, clinic The clinic might purchase organizers for those caregivers that expressed a strong interest in using them. Again, the caregivers should have input into the type and design and the use of stickers should be cons i dered as well. For the Community. The following recommendations originate from the data obtained through both the in-depth interviews (see pages 53-54) and the surveys (see pages 40-42) 65

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Access to transportation is a larger scale i ssue which is outside of the scope of the cl i nic staff to address Local planning bodies such as the Ryan White Care Council and its various committees and admin i strators of the Medicaid cab, bus and medical transport services need to engage one another in an on-going dialogue to improve serv ice delivery to this population Continuous quality improvement measures might include regular satisfaction surveys with the consumers of these services and feedback to the providers on ways to improve service delivery Consumer comment cards and phone surveys for those who are responsible for coordinating these services for the consumers e g case managers nurses social workers might prov ide venues for serv i ce quality management. 66

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Chapter Seven Critical Review and Areas for Future Study Critical Review The concept of compliance implies that the caregiver and/or patient should follow a prescribed regimen (e g medication-taking or appointment-keeping as deemed appropriate by the health care professionals) But this would be an opportune time to introduce a new concept that would speak to the extent to which there exists a "shared understanding" (Kleinman and Seeman 2000 : 237) of a patient's illness and the best possible course of treatment and care. The reorientation of health care toward the enlisting of''the patient as a therapeutic ally" and providing care for problems patients regard as important in ways that patients desire" (Katon and Kleinman 1981:262) would require a fundamental framework shift that values the knowledge of both the physician and the caregiver. Each one's perceptions would be considered equally important and vital to developing a treatment and care plan Neither party would come to the table with exclusive expertise. The highest level of conceptual consensus would exist when both the physician's and the patient's/caregiver's understanding of the etiology, expected course, and predicted outcome, and ideas about appropriate treatment" (Kleinman and Seeman 2000 : 236) were most closely aligned Based on this investigator's research, it appears that the vast majority of the caregivers, surveyed and interviewed have a clear understanding of the importance of attending appointments and the role it plays in keeping on top of the progression of the 67

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disease There also seems to be a very strong indication that almost all caregivers believe that keeping appointments is necessary and contributes to the health of their children The lack of understanding, therefore appears to exist between the physician/medical staff and the caregiver as to the best way to address the care and treatment of the disease. The physician often comes to the process with scientifically sound, cutting edge, state-of-the art medical knowledge, but lacks an understanding of the vast knowledge that the patient/caregiver brings from lived experiences, deeply rooted history and anecdotal evidence Both perspectives are real and both are integral to caring for and treating not only a disease, but the individual with the disease as well It is unfortunate however, that a great deal of time is required to negotiate shared understandings, to exchange "clinical narratives" (Good and Good 2000a:246), and to move toward conceptual consensus. In the present-day world of managed care and HMOs, with the tight restrictions and strict regulations that govern Medicaid funding and other state and federally-funded programs, constraints on time are often not under the control of the negotiating parties The economics of health care today have greatly diminished the ability of the physician to spend the necessary time it takes to come to a deeper awareness of the patient's explanatory model (Kleinman and Seeman 2000 : 237) of his/her illness In addition, much of the training that medical practitioners, especially physicians, receive is not geared toward valuing the patient's knowledge as equally important and integral to optimal care and treatment. Today s medical education institutions, for the most part, reify the belief that doctors are the experts and that this expert knowledge ought to be imparted on the patient in an objective and clinically precise manner. 68

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The Anthropological Connection This research has its roots in anthropological theory and methodology The theoretical connection i s clearly outlined in Chapter Two, Literature Review under the sub-heading In the Anthropological Literature The methodological associations are based in the following : Attempt to capture the "emic or native point of view (Chambers 1989 : 6); Utilization of ethnographic research to inform policy (van Willigen 1993 : 3, 157 160); Utilization ofboth quantitative and qual i tati v e r esearch design and methodologies (Bernard 1995); and, Production of findings that are relevant, credible, accessible and practical in regards to implementing change (Whiteford 2000 : 11 0). Areas for Future Study Possibilities for future study can be categorized in two arenas : micro-level and macro level. Micro level stud i es could include further investigation into the patient s explanatory model of his/her illness, in this case that of the IDV-infected child This could be done with a cross-sectional sample through the use of surveys, in-depth interviews and participant observation or on a case-by-case basis One could conduct case studies examining the experience s and perceptions of an IDV -infected child in terms of receiving and participating in one's medical care and treatment over an extended period of time This could be done in several different clini c s for comparative purposes The work initiated in this study, examin i ng the caregiver's perspective could be expanded to focus on cultural differences, gender differences or other areas of interest 69

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for the caregivers, the clinic staff and/or the investigator. The medical provider perspective could be evaluated using any of the same methods Macro-level studies could look at any number of areas, including how changes in the political and economic landscape over time have impacted the general provision of medical care in the IDV/AIDS field and how these changes have affected patient/physician interaction on the local level. A study could examine various alternative models of physician education and training and the impact that these have had on health care for both the physician and patient in terms of shared understandings as it pertains to care and treatment ofiDV/ AIDS As stated in the conclusion ofthe second chapter the challenge that faces the clinical medical anthropologist today is to integrate theories, methodologies and analytical frameworks in a manner that can produce meaningful findings that speak to patients practitioners and researchers in an interpretative language It is this investigator's hope that this work has adequately done just that. 70

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References Cited Albrecht Gary L., Ray Fitzpatrick, and Susan C Scrimshaw, eds 2000 Handbook of Social Studies in Health and Medicine. London, Thousand Oaks, New Delhi : Sage Publications Alcalay, Rina, and Robert A Bell 2000 Promoting Nutrition and Physical Activity Through Social Marketing: Current Practices and Recommendations. Sacramento : University of California, Davis Andrews R., J.D. Morgan, D P Addy, and A. S McNeish 1990 Understanding Non-Attendance In Outpatient Pediatric Clinics. Archives of Disease in Childhood 65 : 192-195 Baer, Hans A. 1997 The Microconstruction of Critical Medical Anthropology: A Response to a Cultural Constructiv ist Critique. Social Science Medicine 44(10) : 1565-1573 Becker, Marshall H. 1979 Understanding Patient Compliance : The Contributions of Attitudes and Other Psychosocial Factors In New Directions in Patient Compliance. Stuart J Cohen, ed. Pp. 1-31. Lexington Toronto : Lexington Books Becker Marshall H. and Irwin M Rosenstock 1984 Compliance with Medical Advice In Health Care and Human Behavior. Andrew Steptoe and Andrew Mathews eds Pp 175-208 London, Orlando: Academic Pre ss Inc Becker, Marshall H., Constance A. Nathanson, Robert H. Drachman, and John P Kirscht 1977Mothers' Health Beliefs and Children's Clinic Visits : A Prospective Study Journal ofCommunity Health 3(2) : 125-135 Bernard, H. Russell 1995 Research Methods in Anthropology : Qualitative and Quantitative Approaches Walnut Creek, London, New Delhi : AltaMira Press Catz S L., J. B McClure G N Jones, and P J. Brantley 1999 Predictors of Outpatient Medical Appointment Attendance Among Persons With illV. AIDS Care 11(3): 361-373. 71

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Cegala Donald J. and T. Marinelli 2000 The Effects of Patient Communication Skills Training on Compliance The Journal of the American Medical Association 283(14) : 1806 Chambers Erve 1989 Applied Anthropology : A Practical Guide Prospect Heights : Waveland Press, Inc Clerici Annette M Stephen R. Wisniewski, Herbert L. Needleman, Loretta C Kemp and Raquel R. Ingraham 1996 Efforts To Assess Subject Participation Controlled Clinical Trials 17(2), Supplement 1 : 97S-98S Conrad Peter 1985 The Meaning of Medications: Another Look At Compliance Social Science and Medicine 20(1) : 29-37 Deyo Richard A., and Thomas S Inui 1980 Dropouts and Broken Appointments Medical Care 18( 11 ) : 1146-1156 DiMatteo M. Robin Heidi S Lepper and Thomas W Croghan 2000 Depression Is a Risk Factor for Noncompliance W ith Medical Treatment Archives oflntemal Medicine 160 : 2101-2107 Donovan, Jenny L. and David R. Blake 1992 Patient Non-Compliance : Deviance or Reasoned Decision-Making ? Social Science and Medicine 34(5) : 507 513 Dunbar Jacqueline 1979 Issues in Assessment. In New Directions in Patient Compliance Stuart J. Cohen, ed Pp 41-57 Lexington ; Toronto : Lexington Books. Eraker Stephen A., John P Kirscht, and Marshall H Becker 1984 Understanding and Improving Patient Compliance. Annals oflntemal Medicine 100 : 258-268 Farmer Paul 1999 Infections and Inequalities : The Modem Plagues Berkeley Los Angeles London : University of California Press Freed, Lorraine H. Jonathan M Ellen, Charles E Irwin, and Susan G. Millstein 1998Detenninants of Adolescents Satisfaction With Health Care Providers and Intentions to Keep Follow-Up Appointments Journal of Adolescent Health 22 : 475479 72

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Garrity Thomas F 1981 Medical Compliance and the Clinician-Patient Relationship : A Review. Social Science and Medicine 15E : 215-222 Glanz Karen and Barbara K. Rimer 1995 Theory At A Glance : A Guide To Health Promotion Practice Washington, D.C. : National Cancer Institute Good, Mary-Jo Delvecchio, and Byron J Good 2000a Clinical Narratives and the Study of Contemporary Doctor-Patient Relationships In The Handbook of Social Studies in Health & Medicine Gary L. Albrecht Ray Fitzpatrick and Susan C. Scrimshaw eds Pp. 243-258 London, Thousand Oaks New Delhi : Sage Publications 2000b ''Parallel Sisters : Medical Anthropology and Med i cal Sociology In Handbook of Medical Sociology 5th edition Chloe E Bird Peter Conrad and Allen M Fremont eds Pp. 377-388 Upper Saddle River: Prentice Hall Irwin, Charles E Susan G Millstein, and Jonathan M. Ellen 1993 Appointment-Keeping Behavior in Adolescents: Factors Associated With Follow-Up Appointment-Keeping Pediatrics 92(1) : 20-23. Janz Nancy K., and Marshall H. Becker 1984 The Health Belief Model : A Decade Later. Health Education Quarterly 11 (1 ) : 1-47. Katon, Wayne and Arthur Kleinman 1981 Doctor-Patient Negotiation and Other Social Science Strategies in Patient Care. In The Relevance of Social Science for Medicine Leon Eisenberg and Arthur Kleinman eds. Pp. 253-279 Dordrecht, Boston London : D Reidel Publishing Company Keshavjee, Salmaan 1996 Medical Anthropology: Insights Into the Social, Political, and Economic Determinants ofHealth. Electronic document, http: / /ww w fcla ufLedulcgi-bin/cgiwr aollouisr /cgids/NO 1 &753 5 8 1 accessed September 21 1997 Kiefe, Catarina I. and Prentiss L. Harrison 1993 Post-Hospitalization Followup Appointment-Keeping Among the Medically Indigent Journal of Community Health 18(5) : 271-282 Kissinger Patricia, Deborah Cohen William Brandon, Janet Rice Anne Morse and Rebecca Clark 1994 Compliance With Public Sector IDV Medical Care. Journal ofthe National Medical Association 87(1): 19-24. 73

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Kleinman, Arthur 1986 Social Origins ofDistress and Disease: Depression, Neurasthenia, and Pain In Modern China New Haven, London : Yale University Press 1995 Writing at the Margin : Discourse Between Anthropology and Medicine Berkeley, Los Angeles, London : University of California Press Kleinman, Arthur and Don Seeman 2000 Personal Experience of Illness In The Handbook of Social Studies in Health & Medicine. Gary L. Albrecht, Ray Fitzpatrick and Susan C Scrimshaw, eds Pp. 230242 London, Thousand Oaks New Delhi : Sage Publications Kuzma, Jan W 1998 Basic Statistics for the Health Sciences. Mountain View : Mayfield Publishing Company. Lerner Barron H 1997 From Careless Consumptives To Recalcitrant Patients: The Historical Construction of Noncompliance Social Science and Medicine 45(9) : 1423-1431. Macharia, William M Gladys Leon Brian H. Rowe, Barbara J. Stephenson, and Brian Haynes 1992 An Overview of Interventions to Improve Compliance With Appointment Keeping for Medical Services The Journal of the American Medical Association 267(13) : 1813-1817 Mehta, Supriya, Richard D Moore and Neil M H Graham 1997Potential Factors Affecting Adherence With HIV Therapy AIDS 11:1665-1670 Miller, Delbert C. 1991 Handbook ofResearch Design and Social Measurement Newbury Park, London, New Delhi: Sage Publications. Mirotznik, Jerrold, Ellen Ginzler, Gary Zagon, and Alice Baptiste 1998 Using the Health Belief Model to Explain Clinic Appointment-Keeping for the Management of a Chronic Disease Condition Journal of Community Health 23(3) : 195-216 Morgan, Lynn M 1987 Dependency Theory In the Political Economy ofHealth: An Anthropological Critique Medical Anthropology Quarterly 1 (2) : 131-154 Morsy So heir 1996 Political Economy in Medical Anthropology In Handbook of Medical Anthropology : Contemporary Theory and Method Carolyn F Sargent and Thomas M Johnson, eds Hartford : Greenwood Press 74

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Newell Sallie A., Jennifer A Bowman, and Jill D Cockburn 1999 A Critical Review of Interventions to Increase Compliance With Medication Taking Obtaining Medication Refills and Appointment-Keeping in the Treatment of Cardiovascular Disease Preventive Medicine 29:535-548. Ro s s, Fiona M 1991 Patient Compliance Whose Responsibility? Social Science and Medicine 32(1): 89-94 Scheper-Hughes Nanc y 1990 Three Propositions For A Critically Applied Medical Anthropology Social Science Medicine 30(2) : 189-197 Singer Merrill 1989 The Coming of Age of C ri tical Medical Anthropology Social Science Medicine 2 8(11): 1193-1203 Singh, N. C Squier C. Sivek, M. Wagener M Hong Nguyen, and V. L. Yu 1996 Determinants of Compliance With Antiretro v iral Therapy in Patients With Human Immunodeficiency Virus : Prospective Assessment With Implications for Enhancing Compliance AIDS Care 8(3) : 261-269 Trostle James A. 1988 Medical Compliance As An Ideology Social Science and Medicine 27(12) : 1299-1308 van Willigen, John 1993 Applied Anthropology : An Introduction Westport London : Bergin & Garve y Volmink, Jimmy, Patrice Matchaba, and Paul Gamer 2000Directly Observed Therapy and Treatment Adherence The Lancet 355 : 13451350 Wells Robert D Jim McDiarmid, and Mahin Bayatpour 1990 A Cost-Effective Technique for Predicting Prenatal Appointment Keeping Rates Among Pregnant Teenagers Journal of Adolescent Health Care 11: 119-124 Weidle Paul J., C E Ganea, J. Ernst J. McGowan, K. L. Irwin and S D Holberg 1998 Multiple Reasons for Nonadherence to Antiretroviral Medications in an Inner Minority Population: Need for a Multifaceted Approach to Improve Adherence 12 World AIDS Conference: Geneva, June 28-July 3 Abstract 32360 75

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Whiteford Linda 1996 Political Economy, Gender and the Social Production ofHealth and Illness In Gender and Health : An International Perspective Carol F Sargent and Caroline B Brettell eds Newark : Prentice Hall 2000 Staying Out of the Bottom Drawer. In Classics ofPracticing Anthropology 19781998 Patricia J. Higgins and J. Anthony Paredes, eds. Oklahoma City: Society for Applied Anthropology. 76

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Appendices 77

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Appendix A: Caregiver Survey PROVIDER RATING OF KEEPING SCHEDULED APPOINTMENTS After a provider refers a patient to you, show the rating scale to the provider and ask him/her to place a check on the line that represents their opinion about how consistent this caregiver/guardian/parent is in keeping scheduled appointments. Always Keeps Appointments (100%) Usually Keeps Appointments (75%) Sometimes Keeps Appointments (50%) 78 Rarely Keeps Appointments (25%) Never Keeps Appointments ( < 100/o)

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Appendix A (Continued) APPOINTMENT -KEEPING PRACTICES BELIEFS AND ATTITUDES SURVEY I HOW YOU KEEP YOUR CIDLD S APPOINTMENTS A. The first section on the questionnaire asks about the appointments that you kept over the last year. Most people with IDV and/or those caring for someone with HIV have many appointments to keep during the course of a week, a month or a year Many people flnd it hard to always remember their/their children s appointments Some people get busy and forget the times and dates of their appointments Some people find it hard to get to their appointments because of having a tough time getting time off from work, finding a ride, getting someone to watch their other children, or because either they or their children are not feeling well. Some people decide not to come to their appointments to avoid having to talk about their HIV or their children's IDV or just not to be around an HIV clinic that day I want to understand how people who care for children with IDV (or IDV exposure) are really doing with keeping their appointments. Please tell me what you are actually doing Don t worry about telling me that you don't keep all your appointments I need to know what is really happening; not what you think I want to hear This section is to be completed by the patient and study coordinator together 79

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Appendix A (Continued) 1. W 'th th d d h !I II 1 e stu 1y coor mat or, pJ ease complete t e o owmg questiOns : Step 1 Step 2 Step 3 Time period How many appointments How many did your child were scheduled for your actually attend? child to attend? In the last 3 months In the last 6 months In the last year 2 The next section of the questionnaire asks about the appointments that you may have missed during the last 3 months, 6 months and a year If you called the day of the appointment (or before) to reschedule or to cancel and later rescheduled, please report that as well. Step 1 How many appointments did you miss . What happened Step 2 Step 3 Step4 In the last 3 In the last 6 In the last months months year Skipped it completely Called to cancel later rescheduled Called to reschedule 3 During the last year, did the clinic staff ever call and reschedule your child's appointment? Yes 0 No 0 IF YES how many times did the clinic staff do this during the last year? Once Twice Three Times > Three Times 0 0 0 0 80

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Appendix A (Continued) 4. During the last year, did you/your child show up for clinic when your child did not have a prior scheduled appointment? Yes 0 No 0 IF YES, how many times? Once Twice Three Times > Three Times 0 0 0 0 How many times were you seen in the pediatric mv clinic ? None Once Twice Three Times > Three Times 0 0 0 0 0 5 Some people find that they forget to attend their appointments when they haven t had an appointment in a long time. When was your child s last scheduled appointment? < 1 month ago < 3 months ago < 6 months ago < 1 year ago 0 0 0 0 Did you/your child attend that appointment ? Yes 0 No 0 6 When was the last time you/your child missed an appointment? 7 8 Within the past 2 weeks . ..................... 0 2-4 weeks ago ........................ ......... 0 1-3 months ago ........... ..................... 0 3-6 months ago ..... ........................... 0 6 12 months ago ..... .......................... .0 More than a year ago ................. .. .. ... .0 Never missed an appointment. ........ .. .... .0 Not applicable ....... .. ................ ......... 0 Do you ever forget your child's appointments? When your child feels better do you sometimes decide not to attend the appointment? 81 No 0 Yes 0 No 0 Yes 0

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9. Appendix A (Continued) Sometimes if your child feels worse after seeing the doctor do you decide to skip your child's next appointment? No 0 Yes 0 10 Sometimes people only want their child to be seen by a certain doctor. Have you ever decided not to attend your child's appointment because you thought a certain doctor was not going to be there ? No 0 Yes 0 IF YES how many times have you done this in the last year? Once Twice Three Times > Three Times 0 0 0 0 How To Answer Questions Using Rating Scales During the rest of this interview I will ask many questions that are answered in similar ways Before we start I would like to practice a few questions to make sure you understand how to answer the questions For e x ample this scale ranges from agree on one end to disagree on the other. Ifl were to ask you to use this scale to answer, "The weather is nice today, you would have to make two judgements : 1 First I would like you to decide if you disagree or agree with the statement. 2 Then I would like you to decide how much you agree or disagree with The weather is nice today." Then make an X on the line above the word that describes how much you agree or disagree Disagree Agree Strongly So mewh a t N either Sligj'Jtly Stron gl y Let s try another question Using the disagree to agree scale how much do you agree or disagree with the statement Florida is a nice place to live." Disagree Agree Strongl y So mewhat Sligj'Jtly Stron gly 82

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Appendix A (Continued) j Keeping Your Child s Appointments Now we will move i nto the survey on your thoughts and feelings about keeping your child s appointments. I would like you to think about how you keep your child s appointments. Please answer as honestl y as possible I just want to remind you that your answers are completely confidential. 1. Based on your responses to earlier questions, your child had a total number of XX scheduled appointments with the HIV clinic in the last year How often would you say you kept those appointments? Always Usually Sometimes Rarely Never 2 How strongly do you disagree or agree with the following statement? I have kept my child's scheduled appointments every time i n the last year Disagree Agree Strongl y Somewhat N either Sligptl y Stroogl y How strongly do you disagre e or agree with the following statement ? Ifi wanted to, I could easily keep e v ery scheduled appointment as recommended by the clinic staff for the next year Disagree Strongl y Som ew hat N either S ligptl y Str on gl y 3 How strongly do you disagree or agree with the following statement ? I have complete control over keeping my child s scheduled appointments as recommended by the clinic staff for the next year? Disagree Strongl y Somewhat N either Sligptl y Strongl y Agree Agree The next question is about how likely you are to keep your child's appointments I would like your honest opinion about this. Your own opinion is important to me 4 So, in your own opinion, how likely is it that you will keep your child's scheduled appointments as recommended by the clinic staff for the next year ? 83

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Appendix A (Continued) First I would like you to decide whether you keepin g your child's scheduled appointments as recommended by the clinic staff for the next year is likely or unlikely Then I would like you to decide how likely or unlikely it is that you will keep your child s scheduled appointments Mark on the scale below how likely this is Unlikely Likely Extr emel y Slightly Slightl y E xtremel y Feelings About Keeping Your Child s Appointments This next section is about how you feel about keeping y our child's scheduled appointments Each question again is a two step procedure 1 First I would like you to decide how you feel now about keeping your child s scheduled appointments based on the words at the ends of each line 2 Then I would like you to decide how strongly you feel about each judgement. Then make an X on the line under the word that describes how strongly you feel about it. This information is important to me Please give me as honest an answer as you can. Question: Bad Unnecessary Unsatisfying Keeping every one of my child's scheduled appointments as recommended by the clinic staff for the next year would be .. Extremely Slightly Neither Slightly Extremely Good Necessary Satisfying Uncomfortable Comfortable Inconvenient Con ve nient Difficult Easy 84

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Depressing Unhealthy Unpleasant Stressful Not under my control Not up to me Appendix A (Continued) -----Uplifting Healthy Pleasant Relaxing Under my control Up to me Things That Make It Easier Or Harder To Keep Appointments Now I would like to ask you about things that may make it easier or more difficult for you to keep your child's scheduled appointments Remember, I would like your honest opinion about each of these questions I am interested in what you think First, think about whether each numbered statement would make it difficult or easy to keep your child's scheduled appointments Then think about how difficult or easy it would be. Place an X on the line under how easy or difficult it would be. Would each of the following make it easy or difficult for you to keep your child's scheduled appointments as recommended by the clinic staff for the next year? Extremely Slightly Neither Slightly Extremely Diffi c ult Difficult Easy Easy 1. Your work or sc hool schedule --------2 If you were busy --------3 If you felt sick --------4 If the kids were home from school ---------5 If you got a reminder phone call ---------6. If you got a written reminder card ------7 If you f elt depressed ------8 If you had your own car ------9 If you had to take a cab ------10 If your friend gave you a ride --------11. If you had to take the bus -------85

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Appen d ix A (Continued) 12 If y o u had someo n e t o watch the kids ---------13. If you did not like going to the doctor ---------14 If your child felt sick --------15. If you were aroun d people who did not know you and/or your chil d are IDV+ --------16 If you used a calendar or organize r --------17 If you h a d so m eo n e to remind you --------18. If your child was afrai d of going to the doctor ------I How Often Things Happen I n Your Lif e Now I would like to know how often these things happen to you Circle the number that most closely matc he s how often the item happens in yo u r l ife. 1 In a typical month how demanding is your work or schoo l sched ul e? 1 2 3 4 Not at al l 2 In a typical month how busy is your life ? 1 2 3 4 Not at al l 3 In a typical month how often do you feel sick 1 2 3 4 Not at all 4 I n a typical mo nt h how often are the kid s home from schoo l ? 1 2 3 4 Not at all 86 5 Ext r e m e l y 5 Extremely 5 Extreme l y 5 Extremely

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Appendix A (Continued) 5 For a typical appointment how often do you get a reminder phone call? 1 2 3 4 Not at all 5 Extremely 6 For a typical appointment how often do you get a written reminder card? 1 2 3 Not at all 7 In a typical month how often do you feel depressed? 1 Not at all 2 3 4 4 8. For a typical appointment how often do you have your own car? 1 2 3 4 Not at all 9 For a typical appointment how often do you have to take a cab? 1 2 3 4 Not at all 5 Extremely 5 Extremely 5 Extremely 5 Extremely 10. For a typical appointment how often do you have to get a ride from a friend? 1 2 3 4 Not at all 11. For a typical appointment how often do you have to take the bus? 1 2 3 4 Not at all 5 Extremely 5 Extremely 12 For a typical appointment how often do you have someone to watch the kids? 1 2 Not at all 3 87 4 5 Extremely

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Appendix A (Continued) 13. In general, how much do you like going to the doctor? 1 2 3 Not at all 14. In a typical month how often does your child feel sick? 1 2 3 Not at all 4 4 5 Extremely 5 Extremely 15. In a typical month how often are you around people who do not know you are IDV+? 1 2 3 4 Not at all 16. In a typical month how often do you use a calendar or organizer ? 1 2 3 4 Not at all 5 Extremely 5 Extremely 17 For a typical appointment how often do you have someone to remind you? 1 2 3 4 Not at all 18 In how afraid is your child of going to the doctor ? 1 2 3 4 Not at all I Beliefs About Keeping A Child's Scheduled Appointments Now I will give you a list of beliefs about keeping a child's scheduled 5 Extremely 5 Extremely appointments I would like you to think about each of the statements and tell me how you feel about it People will have different opinions about the various statements I am interested in your opinion Mark on the scale provided the degree you feel each statement is likely or unlikely 88

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Appendix A (Continued) Keeping aU of your child's scheduled appointments for the next year as recommended by the clinic staff will .. Extremely Slightly Neither Slightl y Unlikely Unlikel y Likely 1. Remind you that you/your child arelllV+ ----2. Result in people fmding out you/ your child are HIV+ -------4 Keep your child from getting sick --------5. Help your child live longer --------6 Restrict your ability to travel -----7 Make your child feel better --------8 Make you/your child feel depressed -------9 Make you/your child feel tired -----10 Keep your child healthy --------11. Cost you money --------11. Mean you have to find someone to watch your children --------12. Mean you have to arrange transportation -------13. Mean you have to take time off from work -------14 Mean you have to talk to a lot of people about you/your child beingHIV+ -------j How Good Or Bad Extremely Likely -------------------------Now I would like to ask you to listen to some general statements I am interested in your opinion about each statement. Let me explain the scale I want to use I would like your honest opinion about these statements, because everybody has different opinions about them. Your opinion is what is important to me 89

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Appendix A (Continue d ) Extremely Slightly Neither Slightly Extremely Bad Bad Good Good l. Reminding you that y ou/your child are HIV+ would be . --------2. Having people finding out you/ your child are HIV+ would be ... ------3 Keeping your child from getting sick w ould be .. --------4 Your child living longer would be .. ----------5. Restrictions in your being able to travel would be . ----------6. Your child feeling better would be . ---------8 You/your child feeling depressed would be ... -----9 You/your child feeling tired would be ... --------10 Yourchildkeepinghealthy would be ... -------11. The appointment costing you money would be . ---------12 Your having to find someone to watch your children would be ... ---------13. Your having to arrange transportation would be ... ---------14 Your having to take time off from work would be ... -------15 Your having to talk t o a lot of people about you/your child being HIV+ would be . --------j B ackg ro und Informa tion To help understand how people keep appointments I would like some background information about you, your child, your health and your c hil d s health 90

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Appendix A (Continued) Please try to answer every question, unless you are asked to skip questions that do not apply to your situation Answer by circling a number (e g I) or writ i ng in your response on the line provided. Feel free to write notes about things you think are i mportant. Use the left margins and blank spaces on the pages for this purpose What was your age (in years) at your last birthday? AGE : ---Are you male or female? (Circle One) Male ........................ I Female ..................... 2 What is the highest year of school you have ever completed and received credit for? (Circle One) No formal school. ................. 01 I st year college .................... 07 Grades I through 8 ..... .. ...... .. 02 2nd year college ... ... ... ........... 08 Grade 9 .............................. 03 3rd year college ..................... 09 Grade IO .. ......................... 04 4th year college ............. ... ..... I 0 Grade II ............................ 05 1st y ear post-graduate .............. I1 Grade 12 ............................ 06 2nd year or more post-graduate .... I2 What is your main racial or ethnic group: (Circ l e One) Black (not Hispanic) ... ... . .. .. .. I American Indian or Alaskan Native ...... 5 White (not Hispanic) ............... 2 Mixed, no main group ......... ............ 6 Hispanic ............. ............. ... 3 Other what? ................................. 7 Asian or Pacific Islander ... ..... ... 4 91

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Appendix A (Continued) Have you had a job or business during the past 12 months? (Circle One) Yes .. ................ 1 No ................ ... 2 Which of these categories best describes the kind of work you do on your current job or business (or on your last regular job or business) If you currently do more than one kind of work, pick the category for the work that provides the most income Labo rer (Animal caretakers c onstruction helpe r s g ardeners and groundskeepers fishermen vehicle washers and (Circle one) equ i pment cleane rs, warehouse workers ). . . . . . . . . . . . . . . . . . . . . 0 1 Farmer. farm laborer (Farm owners managers laborers) .. ............................ .. 02 Service worke r (Bartender cooks waiters, health aides prac t ical nurses airline flight attendants hairdressers, child care workers fire fighters police, guards) . ... ............. . . .. .............. .. . .. .. 03 Transport operator (Bus drivers parking attendants delivery people taxi drivers, truck drivers) ......... ........... ... .......................... 04 Equipment operator (Dressmakers, dyers milliners precision machine operators textile machine operators, packers and wrappers, garage workers) .................................... ................. 05 Craftsman (Bakers, bookbinders cabinet makers dental lab technic i ans decorators and window dressers, jewelers mechanics and repai r men, tailors members of the Armed Forces) .. ...................................................................... 06 Clerical ( Bank tellers, bookkeepers cashiers estimators file clerks insurance adjusters library assistants mail carriers, receptionists secretaries, ticket a g ents proofreaders) .. .. .. ................... 07 Manager. administrator sales (Retail and wholesale buyers, health administrators office managers public admin is trators restaurant representatives) ...................................... 08 92

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Appendix A (Continued) Professional, technical (Architects computer specialists librarians, scient is ts health professionals teachers, writers artists and entertainers) ................................................. 09 NEVER HAD A JOB OR BUSINESS .. (Skip to Q 9) ............................ ... 10 Currently are y ou : (Circle One) Workin g full t i me ........... ... .................. 1 In school ...................... 5 Working part time ................. .......... ..... 2 Keeping house or. ......... 6 Unemplo y ed laid off, or lookin g for work ... 3 None ofthe above ? ......... 7 Retired disabled or no longer working ....... 4 What was your household income from all sources before taxes, in 2000? (Circle One) $4 999 or less ........................ 01 $40 ,000$49 9 99 .. ................ 06 $5 000 $9 9 9 9 ...................... 02 $50 ,000$59 999 .. ............... 07 $10,000$19 99 9 ................ ... 03 $60 ,000$69 999 .. .. .. ............ 08 $20 ,000$29 9 9 9 ................... 04 $70 ,000$79 ,99 9 .................. 09 $30 ,000$39 ,999 ......... .......... 05 $80 ,000 or more .. .................. 10 How many people are currently living in your household? (Circle One) One .................................. 01 Four .............. ........... .. ...... 04 Two ................................. 02 Fi ve ................................. 05 Three ............................... 03 Six or more ........................ 06 93

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Appendix A (Continued) Which risk group (or groups) best describe how you may have been exposed to the HIV (AIDS) virus? (Circle All That Apply) a Gay / homosexuaVb i sexual .. . . . . . . . . . . . . . . . . 1 b IV drug user. ............ .. .................................. 2 c Hemophiliac ............ .................................... 3 d Heterosexual partner of person with HIV ............... 4 e Transfusion ........................ . ..................... . 5 f. Other. ........................ ...... . ....... ............... 6 Please specify----------------g. Not HIV-infected ......................................... .. 7 What is your relationship to the child being seen in this clinic? Biological parent (mother/father) ............ 01 Adoptive parent .............. . .... OS Sibling (sister/brother) ......................... 02 Foster parent ................. ....... 06 Aunt/Uncle ........ . ............................ 03 Legal guardian ..................... 07 Grandparent ....... . . .......................... .. 04 Other ............................ .... 08 Please specify _______ Which kind of health insurance does your child currently rely on for HIV care? (Circle One) Private Health Insurance through work or self-pay ............ ... ..................... .. . . 1 A Government Program (e.g Med i caid CMS Healthy Kids HC Health Plan) ......... 2 Does not have health insurance ...................... .. ........ . ................... ............ 3 94

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Appendix A (Continued) Right now, are you living with: (Circle One) Your spouse _ .... ___ _________________ .. ....... 1 Long-term partner or lover . ___ ___ ........ 2 Roommate ........................ ........ ...... 3 Family (other than spouse) . __ .. .. ...... . 4 or Alone with child(ren) ..................... 5 Right now, are you living in: (Circle One) Private home or apartment ..... _. __ ._._._ . 1 Group home or foster home .. __ ______ ___ .. 2 HospitaL ________ ........ ..... .... ... ___ ..... 3 No fixed living arrangement .. .. ... ... .. 4 In general, would you say that your health is: (Circle One) Excellent .... ____ _ .. ____ .......... __ ... ___ 1 Very Good ______ ............ ---_ _ ... .... 2 Good ................................... ....... 3 Fair. ...... . .. ............................. . 4 Poor __ .. ............... ___ ............. . 5 95

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Appendix A (Continued) What was your child's age (in years) at his/her birthday? AGE : ---Is your child male or female? (Circle One) Male ..................... ... 1 Female ..................... 2 What is the current year of school your child is presently enrolled in? (Circle One) Not in school.. ....... ................ 01 1st -6th grade ........................ 05 Day care ............................... 02 -f' gth grade ........................ 06 Pre-school .............. ............ 03 9th -12th grade . . . . . . . . . . . 07 Kindergarten ........................ 04 College ............................... 08 What is your child's main racial or ethnic group: (Circle One) Black (not Hispanic) ............... 1 American Indian or Alaskan Native ...... 5 White (not Hispanic) ............... 2 Mixed no main group ....................... 6 Hispanic ........................ ...... 3 Other what? ................................. 7 Asian or Pacific Island er. .......... 4 Which risk group best describes how your child may have been exposed to the HIV (AIDS) virus? (Circle All That Apply) a Gay / homosexual/bisexual. .. . . . . . . . . . . . . . . . 1 g IV drug user ............................................ . .. 2 h Hemophiliac .............. .. ........... ... . ................. 3 1. Heterosexual partner of per so n with IDV ............... 4 J. Transfusion .................................................. 5 96

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Appendix A (Continued) k Mother-to-child ............................................. 6 l. Other. ...................................................... .. 7 Please specify----------------Is your child currently enrolled in a clinical trial? (Circle One) Yes ................................. 01 No .................................. 02 In general, would you say that your child's health is: (Circle One) Excellent ..................................... 1 Very Good ............... .................... 2 Good .......................................... 3 Fair ....................... .. .......... .. ...... 4 Poor. ......................................... 5 97

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Appendix B : Interview Questions In-Depth Interview Questions Unique identifier number : -------------------Appoinunent-Keeping in the USF/CMS Pediatric Clinic Date : -----------How often would you say you attend your child's appointments? What are some of the reasons you might sometimes miss an appointment? Have you ever decided not to come to an appointment? Why or why not? Do you think your child's health condition is serious? Why or why not? Do you think the Clinic staff believes your child's health condition is serious? What makes you think this? Do you think it is important to keep all your child's appointments with the Clinic? Why or why not? What do you think will happen if you don't keep your child's appointments? What makes you think this? Does your child presently take any medicines as prescribed by someone in this Clinic? Do you have to come into Clinic to pick up the medications or get refills? Do you think these medicines are helping? Why or why not? If no, why not? Why would you ever not give the medications? Do you think coming to the appointments helps to keep your child healthy? Why or why not? 98

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Appendix B (Continued) In-Depth Interview Questions Appointment-Keeping in the USF/CMS Pediatric Clinic Do you think you can trust the medical staff at the Clinic to be honest with you about your child's health? Why or why not? How long have you been coming to this Clinic? Do you think your child gets good care here in this Clinic? Why or why not? If another Clinic was available, would you think of taking your child somewhere else? Why or why not? How do you get to your child's appointments? Does this affect your ability to come for your child's appointments? Do a lot of other people know about your status? Your child's status? Why or why not? Do you think coming to Clinic could allow other people to find out about your status/your child's status? Does this affect whether or not you come? Has your child had the same doctor the entire time he/she has been coming to this Clinic? Does it make a difference to you one way or the other if your child is seen by a certain doctor or not? Would it make a difference to you if there were a whole team of doctors? Do you find you have to talk to several people when you come to Clinic about your/your child's health status? If yes, how does this affect you? 99

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Appendix B (Continued) In-Depth Interview Questions Appointment-Keeping in the USF/CMS Pediatric Clinic Does someone from the Clinic staff call and remind you about the appointment? If yes, does this help? Do they call the day before or the week before? How does it work? If no, would you like them to? Do you think it would help? Does someone from the Clinic staff send you a reminder card in the mail? If yes, does this help? If no, would you like them to? Do you think it would help? Does your child like coming to Clinic? Why or why not? Do you like coming to the Clinic? Why or why not? What are some ways things could be changed so that it would be easier for you to come to your child's appointments? Is there anything the Clinic staff could do differently to make it easier for you to come to your child's appointments? In your opinion, what are some of the things that make people not want to come to Clinic? What are some of the reasons that make it difficult to come to Clinic? Do you think that if the Clinic staff explained more clearly to parents/guardians the importance of coming to appointments that it would make a difference? Why or why not? What advice would you give a parent/ guardian/caregiver regarding trying to keep his/her child's appointments? Thank you for participating! 100


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