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Transitional care for adolescents with HIV

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Title:
Transitional care for adolescents with HIV characteristics and current practices of the adolescent trials network systems of care
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Book
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English
Creator:
Gilliam, Patricia
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University of South Florida
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Subjects / Keywords:
Child-centered
Transition
HIV/AIDS
Developmental
Life skills
Dissertations, Academic -- Nursing -- Doctoral -- USF   ( lcsh )
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non-fiction   ( marcgt )

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Summary:
ABSTRACT: Background: Advances in antiretroviral therapy have resulted in a significant increase in life expectancy for HIV-infected individuals, with more pediatric patients transitioning to adult care. The transition process from pediatric to adult care for adolescents with chronic diseases, such as HIV, is always a challenge. Purpose: The purpose of this secondary data analysis was to describe the characteristics, processes and practice models used by the Adolescent Trials Network (ATN) systems of care that assist adolescents with HIV disease to transition from child-centered care to adult-centered care. Method: This study used health care providers affiliated with the Adolescent Trials Network of HIV/AIDS Interventions (ATN) as key informants. One to three representatives from each site considered to be the most knowledgeable staff member(s) involved with their clinic's transition practice were interviewed.Analysis: The data set consisted of fourteen audio-taped interviews with nineteen key informants, as well as clinic documents that were submitted for review. An a priori coding framework was prepared prior to the initial preliminary analysis based on the study research questions and the interview questions. This initial coding framework was refined using the constant comparative method and subsequent coding discrepancies in the remaining analysis were resolved by consensus. Transcripts and clinic documents were analyzed using content analysis within an ATLAS.ti data management system. Results: Interviews were conducted with 19 staff members (7 social workers, 7 nurse practitioners, 3 physicians, 1 registered nurse, and 1 health educator) from 14 ATN clinics. There was a general consensus from site representatives as they described perceived facilitators of a successful transition and barriers to a successful transition. Descriptions of practice models were provided.Conclusion/Discussion: Two unanticipated findings were the lack of a consensus on the definition of "transition" and what constitutes a "successful" transition. Anecdotal evidence seemed to provide a consensus of opinions from the key informants when asked to describe facilitators and barriers to a successful transition. Examples of practice models that were used in several clinics with a structured transition program were described. Ideas for future research were suggested. A definition of health care transition is proposed.
Thesis:
Dissertation (Ph.D.)--University of South Florida, 2009.
Bibliography:
Includes bibliographical references.
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by Patricia Gilliam.
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Title from PDF of title page.
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Document formatted into pages; contains 123 pages.
General Note:
Includes vita.

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University of South Florida
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aleph - 002029012
oclc - 436758856
usfldc doi - E14-SFE0002840
usfldc handle - e14.2840
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Transitional Care for Adolescents with HIV: Characteristics and Curre nt Practices of the Adolescent Trials Network Systems of Care by Patricia Gilliam A dissertation submitted in partial fulfillment of the requirements for the degree of Doctor of Philosophy College of Nursing University of South Florida Major Professor: Cecilia M. Jevitt, Ph.D. Mary E. Evans, Ph.D. Susan Kennel, Ph.D. Diane M. Straub, M.D. Date of Approval: March 4, 2009 Keywords: child-centered, transition, HI V/AIDS, developmental, life skills Copyright 2009, Patricia Gilliam

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Dedication I would like to dedicate this dissertati on to two young women, L.P. and L.H., both in their early 20’s, who lost their lives to AI DS when all the resour ces available to them could not prevent their untimely deaths. Let us help them to grow up…they are going to live.

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Acknowledgments I thank the members of my doctoral supervisory committee, colleagues and friends for their expertise, guidance a nd support during the development of this dissertation. I would also like to also tha nk Dr. Gail Powell-Cope for her assistance and encouragement during the beginni ng semesters of my doctoral studies. I would also like to thank Dr. Lois Gonzalez for her contributi ons during the preliminary stages of this dissertation project. Her assi stance with the qualitative design and ATLAS.ti analysis were invaluable. I thank my husband, Bill Willoughby, fo r all that and everything else.

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i Table of Contents List of Tables iii Abstract iv Chapter One: Background 1 Introduction 1 Problem Statement 2 Transition of adolescents with chronic illnesses 3 Research Gap 4 Purpose Statement 4 Research Questions 4 Significance to Nursing 5 Chapter Two: Review of the Literature 6 Introduction 6 Logic of the Literature Search and Discussion 7 Origins of the Domain: Transition of Adolescents with Chronic Diseases 9 Policy and Position Statements 11 Transition of Adolescents with Chronic Illness and Special Health Care Needs 15 Transition of Adolescents with HIV disease 18 Current State of the Science 29 Summary 31 Chapter Three: Methods 33 Introduction 33 Design of the Study 33 Biases and Preconceptions 34 Study Population 35 Sampling Strategy 36 Data Collection and Data Management 37 Tools and Procedures 37 Institutional Approval 38 Collaborative Agreements 39 Consultative support 39 Data Management and Storage 39 Data Analysis 40 ATLAS.ti 42 Becoming Familiar with ATLAS.ti. 42

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ii Document Management 42 Coding Methodolog y and Framework 43 Rigor, Credibility, and Confirmability 49 Summary 50 Chapter Four: Findings 51 Introduction 51 Relationship of Codes to Study Demographic Data 52 Relationship of Codes to Research Questions 56 Research Question One 56 Research Question Two 60 Research Question Three 63 Research Question Four 69 Research Question Five 72 Salient Themes 75 Chapter Summary 78 Chapter Five: Discussion 79 Introduction 79 Summary of the Study 79 Discussion of the Findings 80 Relationship of Codes to Study Demographic Data 80 Research Question One 81 Research Question Two 83 Research Question Three 85 Research Question Four 87 Research Question Five 89 Salient Themes 90 Strengths and Limitations of the Study 92 Dissemination 94 Implications for Nursing Practice 94 Recommendations for Future Studies 95 Summary 96 References Cited 99 Appendices 109 Appendix A: ATN Sites and Principal Investigators 110 Appendix B: Transitional Care C oordinator Interview Schedule 111 Appendix C: PSC 060 Protocol Team Contact Information 116 Appendix D: Origin al IRB Exempt Cert ification # 105455F 117 Appendix E: Revised IRB Exem pt Certification # 105455F 119 Appendix F: Memorandum of Agreement 121 About the Author End Page

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iii List of Tables Table 1 Critical St eps to Ensure a Succ essful Transition 13 Table 2 Challenges and Barriers to HC T in adolescents with HIV disease 25 Table 3 DHHS Recommenda tions to Facilitate to Successful Transition 28 Table 4 A Priori Coding Framework 40 Table 5 Original List of “Free” Codes 43 Table 6 Super Codes 45 Table 7 Final Categories and Codes 47 Table 8 List of Codes for Barrie rs to a Successful Transition 63 Table 9 Plan for Transition to Adult Care 69 Table 10 Foundations of a Transition Model 81 Table 11 Characteristics of Adult Clinics Associated with Successful Transition 83 Table 12 Access and Funding Barrier s to Successful Transition 86

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iv Transitional Care for Adolescents with HIV: Characteristics and Current Prac tices of the Adolescent Trials Network Systems of Care Patricia Gilliam ABSTRACT Background: Advances in antiretroviral therapy have resulted in a significant increase in life expectancy for HIV-infected individuals, with more pediatric patients transitioning to adult care. The transition process from pedi atric to adult care for adolescents with chronic diseases, such as HI V, is always a challenge. Purpose: The purpose of this secondary data an alysis was to describe the characteristics, processes and practice models used by the Adolescent Trials Network (ATN) systems of care that assist adolescents with HIV dis ease to transition from child-centered care to adult-centered care. Method: This study used hea lth care providers affiliated with the Adolescent Trials Network of HIV/AIDS Interventions (A TN) as key informants. One to three representatives from each site considered to be the most knowledge able staff member(s) involved with their clinic’s transi tion practice were interviewed. Analysis: The data set consisted of fourteen audio-taped interviews with nineteen key informants, as well as clinic documents that were submitted for review. An a priori

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v coding framework was prepared prior to the initial preliminary analysis based on the study research questions and the interview questions. This initial coding framework was refined using the constant comparative met hod and subsequent coding discrepancies in the remaining analysis were resolved by consensus. Transcripts and clinic documents were analyzed using content analysis within an ATLAS.ti data management system. Results: Interviews were conduc ted with 19 staff members (7 social workers, 7 nurse practitioners, 3 physicians, 1 registered nurse, and 1 health educator) from 14 ATN clinics. There was a general consensus from site representatives as they described perceived facilitators of a successful transition and barrie rs to a successful transition. Descriptions of practice models were provided. Conclusion/Discussion: Two unan ticipated findings were the lack of a consensus on the definition of “transition” and what cons titutes a “successful” transition. Anecdotal evidence seemed to provide a consensus of opinions from the key informants when asked to describe facilitators and barriers to a successful tran sition. Examples of practice models that were used in several clinics with a structured transition program were described. Ideas for future research were s uggested. A definition of health care transition is proposed.

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1 Chapter One: Background Introduction This dissertation is a secondary data analysis of qualitative data collected to describe the characteristics, structured processes and pr actice models used in the transition of HIV-infected a dolescents from child-centered me dical care to adult-centered medical care from the viewpoint of providers in a unique network of pediatric HIV clinics in the United States. The data was or iginally collected and analyzed manually by this researcher. This secondary data an alysis used ATLAS.ti, a qualitative data management software program (Muhr, 2004). The population of interest is adolescents with HIV disease who are or soon will be transitioning from child-centere d medical care to adult-cente red care. This study used health care providers affiliated with the Adolescent Trials Ne twork of HIV/AIDS Interventions (ATN) as key informants who were most familiar with the transition phenomenon in this population. These key informants were selected because the ATN is a national, collaborative clinical trials networ k established by the Pediatric, Adolescent, and Maternal AIDS Branch of the Nationa l Institute of Child Health and Human Development in 2001. This group of clinics is affiliated with some of the most prestigious academic medical uni versities in the United States and represents the largest cohort of HIV-infected adolescents in the U. S. The characteristics, formal processes and practice models were identifie d through interviews with these ATN key informants and

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2 by examination of written clinic policies and other documents used during the transition process. Problem Statement Improving the process of tr ansitioning adolescents with special needs and chronic medical problems from child-centered medi cal care to adult-centered care has been recognized as a priority by numerous medical, social serv ice and government agencies that include the American Academy of Pediatrics, the American Academy of Family Physicians, the American College of Physicians-American Society of Internal Medicine (Blum, Hirsch, Kastner, Quint & Sandler, 2002), the Society for Adolescent Medicine (Rosen, Blum, Britto, Sawyer, & Siegel, 2003); and the Maternal and Child Health Bureau (n.d.). One of the goals of Health y People 2010 is that all young people with special health care needs will receive the servi ces needed to make necessary transitions to all aspects of adult life, including health care, work, and independent living (Maternal and Child Health Bureau, n.d.). New treatment s of HIV disease have resulted in more HIV-infected children and adoles cents living well into their a dult years. Researchers with the Antiretroviral Therapy Cohort Collabor ation (2008) recently published a metaanalysis of 14 cohorts in the United Stat es, Canada and Europe. Considering those adolescents that began their initial treatme nt regimen between the years 2003 and 2005, a 20-year-old starting antiretrovi ral therapy (ART) could expect to live an additional 43 years. As these young adults age out of th eir current medical insurance coverage and need the expertise of a health care provider in adult HIV care, they will soon be making the transition from child-centered medical care to an adult care setting. There are no

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3 reports that describe curren t transition processes and prac tices used in adolescent HIV clinics in the United States. Transition of Adolescents with Chronic Illnesses Research in the area of health care tr ansition from child-cen tered care to adultcentered care began in the mid-1980s as advances in health care resulte d in more children with chronic illnesses living well into their adu lt years (Blum, et al., 1993, Koop, 1989). Young adults with cystic fibros is, cerebral palsy, epilepsy, si ckle cell disease, juvenile arthritis, juvenile diabetes and spina bifida were some of the first populations to be studied (Reis & Gibson, 2002; Sawin, Cox & Metzger, 1999). According to the most recent Centers fo r Disease Control surveillance data, there were 56,300 new HIV infections per year in the United States from 2003-2006 (Hall et al., 2008). In that same surveill ance period, the CDC estimated th at half of new infections occurred in individuals between the ages of 13 and 24 years (Futterman, 2005). The same surveillance data reported an increase in th e estimated number of HIV/AIDS cases among several young adult age groups that include d persons aged 15 to 19 years and 20 to 24 years (CDC, 2008). A reported 19,979 individua ls between the ages of 13 and 24 years are currently living with HI V or AIDS (CDC, 2008). The majority of HIV infect ed youth receives their medi cal care in a pediatric or child-centered medical setting (Adolescent Tr ials Network, 2006). These individuals will soon reach the age when transition must occu r from child-centered medical services to adult-centered medical services. Adolescents with special health care needs and chronic medical conditions typically transition from the care of their pediatric or adolescent provider between the ages of 18 and 24 years with variations in timing attributed to

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4 health insurance coverage, clin ic policies, availability of adult providers to care for young adults with complex care needs and the cha llenges of terminating relationships with pediatric providers and inst itutions (Reiss & Gibson, 2002). Research Gap Extensive gaps in knowledge exist for all groups of young ad ults with chronic health problems due to the paucity of empiri cal data to help understand and explain the difficulties associated with transition to adult care (Betz, 2008; Reiss, Gibson & Walker, 2005; Viner, 2008). Stigma, disc rimination, marginalization, and social isolation are common in HIV-infected adolescents (AID S Education and Trai ning National Resource Center, 2006; HIV/AIDS Bur eau, 1999). This combinati on of additional concerns suggests that information rela ted to the transition of other patient populations cannot be transferred to adolescents with HIV diseas e. Currently, there is no information that describes the process of transitioning adoles cents with HIV from child-centered to adultcentered care for HIV patients recei ving care in the United States. Purpose Statement The purpose of this study was to identi fy and describe th e characteristics, structured processes and practice models curre ntly being used in the transition of HIVinfected adolescents from child-centered me dical care to adultcentered medical care within the ATN systems of care. Research Questions 1. How do ATN health care team members view transition? 2. What do ATN health care team memb ers perceive as facilitators to a successful transition to adult care?

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5 3. What do ATN health care team me mbers perceive as barriers to a successful transition to adult care? 4. What are the similarities and differ ences among the clinics that have a structured transition program and those that do not? 5. What strategies have ATN health care teams devel oped to assist patients to make a successful transition to adult medical care? Significance to Nursing Research in the domain of transition of adolescents with special health care needs has historically been of inte rest to nurses. In a review 43 research studies conducted from 1982 through 2003 in this domain, almost 30% ( 27.9%) were conducted by nurses (Betz, 2004). This project contributes to the profession of nursing by expanding our understanding of the complex issues involved in planning and implementing a program to facilitate transition of HIV-in fected adolescents from child-c entered medical care to adult care. The insights gained from this understanding may be appli cable in other stigmatized and severely marginalized populations. Nurses are known for their ability to succe ssfully function in multiple roles within complex healthcare environments. Strengths in communication, patient education, health promotion, and patient advocacy combine to make nurses ideal project directors for transition programs. This body of work provid es insights for nurse s who are challenged with these projects.

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6 Chapter Two: Review of the Literature Introduction Patton (2002) suggests that reviewing the literature prio r to data collection “may bias the researcher’s thinking and reduce openne ss to whatever emerges in the field” (p. 226). He suggests that literature reviews fo r a qualitative research project may not be appropriate until after the data collection and analysis. Th is final review of the literature incorporates both the preliminary review used to identify knowledge gaps in the domain as well as the more comprehensive review of the literature that was performed following the data collection and analysis. Following th e preliminary review of the literature, preconceptions were identified and bracketed to prevent bias during both the data collection and analysis phases. It is instructive to discuss the origins of the domain of health care transition (HCT) because the need to transition a dolescents with chronic disease from childcentered care to adult-centered care is a relatively new phenomenon. The need to develop processes that would facilitate a smooth transi tion to adult care was first identified in a public forum in 1984 (B lum, 2002; Koop, 1989). Advances in health care had begun to increase life expectancy for many childre n with congenital anomalies and chronic illnesses (Blum, et al., 1993; Koop, 1989) The late 1980s was also noteworthy within the HIV/AIDS community. The rate of perinatal infection with the HIV virus had increased exponentially due to the emergence of HIV di sease in the female population. There were an estimated 6,000 to 7,000 infants born to women with HIV disease between 1989 and

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7 1994 (Lindegren et al., 1999). The phenomenon of HCT for adolescents with HIV has emerged even more recently and is related to advances in antiretroviral drug therapy that occurred in the mid-1990s. The literature relate d to the transition of adolescents with HIV disease began to emerge in the early 2000s as the population of perinatally infected adolescents with HIV disease began to surv ive to reach young adulthood. Concurrently, the incidence of teenagers infected through high-risk sexual or dr ug use behaviors was also increasing (Valleroy, MacKellar, Karon, Janssen, & Hayman, 1998, Futterman, 2004). There are distinct as well as shared c linical and psychosocial characteristics of these two groups of adolescents. These character istics must be considered in efforts to study the transition of adolescents with HIV disease to adult care. Historical and sentinel publications dating back to 1989 are included in this review. This chapter is organized into sec tions that include the logic of the literature search, the origins of the domain of hea lth care transition (HCT), policy and positions statements addressing the tran sition of adolescents with special health care needs from child-centered health care to adult-centere d care, HCT of adoles cents with chronic illnesses, HCT of adolescents with HIV diseas e, and the current state of the science of HCT. Logic of the Literature Search and Discussion A literature search was performed to retr ieve published information from 1989 to 2009. Only sentinel publications that addr ess the global domain of transition of adolescents with special health care needs and chronic disease have been included in this review. The domain of HCT for adolescen ts with HIV disease addresses a unique adolescent population with a distinct set of needs. There are con cerns within the HIV

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8 professional community that information related to the transition of other patient populations cannot be transferred to the HIV-infected adolescent population (AIDS Education and Training National Resour ce Center, 2006; HIV/ AIDS Bureau, 1999). These concerns surround the s tigma and discrimination asso ciated with HIV/AIDS and how this might affect adolescents’ efforts to establish care in an adult HIV/AIDS specialty clinic. The impact of stigma, social isolation, mental health issues, and frequent parental illness and death combine to form a unique set of factors that may affect the success of transition to adult care. The majority of published research in th e global area of transi tion of adolescents with special health care needs and chronic di sease was generated not only by health care professionals but also policy, public hea lth, and social work professionals. These publications were located in a va riety of social science journals Publications in the more focused area of transition of adolescents with HIV were produced by professionals working with this unique population and were published in HIV/AIDS specialty journals. Databases used in the literature search in cluded the Cumulative Index to Nursing and Allied Health Literature (CINAHL), PubMed, AIDSinfo, AIDS Education Global Information System (AEGIS) a nd the Cochrane Database. A cursory review was done of the references cited in each publication. Th e search terms (key words) used included child, adolescent, youth, HIV, transition, child -centered, and adult-cen tered care. Search terms were combined using Boolean opera tors to maximize the yield and minimize duplication.

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9 Origins of the Domain: Transition of Adolescents with Chronic Diseases Research in the area of health care tr ansition from child-cen tered care to adultcentered care began in the 1980s as the life e xpectancy of children with cystic fibrosis, cerebral palsy, spina bifita, and sickle cell disease began to reach into adulthood (Blum, et al., 1993). The first major public event to introduce the issue of transition of adolescents with chronic disease to adulthood occurred in 1984 at a conference co hosted by U.S. Surgeon General C. Everett Koop and Undersecretary of Education Madeline Will (Koop, 1989). As the population of adolescents and young adults living with chronic and disabling diseases increased, their issu es of transition to adulthood became more urgent. Dr. Koop designated his Surgeon Ge neral’s Conference in 1989 to discuss the phenomenon of adolescents with disabilities special health care needs and chronic diseases. The conference was entitled, “Gro wing Up and Getting Medical Care: Youth with Special Health Care Needs”. The following excerpt from Dr. Koop’s keynote address succinctly identifies the problem: I would like to recall one major issue in the care of special children which has not been adequately addressed and which is a significant barrier to our adolescent and young adult population as they pursue indepe ndence. I refer to the obstacles they encounter and must surmount if the provision and qualit y of medical care is to continue from childhood through the tran sition to adulthood….A basic underlying defect in the system has to do with the lack of a tr ansition protocol for healthy adolescents from pediatric to adult serv ices….How much more difficult for the youngsters with special needs when his/ her acute illness demands entry to the

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10 adult system. Adolescents are having more tr ouble than they need with this aspect of growing up (pp. 3-4, 1989). Also in 1989 the Maternal and Child Hea lth Bureau within the Health Resources Service Administration (HRSA) created a mandate that se rved as the foundation of State Title V programs for Children with Special Health Care Needs (CSHCN). This mandate outlined the need to develop of systems of care for CSHCN that are family-centered, community-based, coordinated and culturally co mpetent. An extension of this idea was included as a long-term national goal in the Healthy People 2010: National Health Promotion and Disease Preven tion program. This goal outlined the need for available services to facilitate transition to all aspect s of adult life, including health care, work, and independent living (CDC, 2000; Maternal and Child Health Bureau, n.d.). One of the six critical indicators of progre ss toward this goal addressed the expectation of good health care, employment with benefits, and independen ce. Available health care options in local communities that are family-centered and developmentally appropriate are expected. Programs should prepare individuals to take charge of their ow n health care and to lead an optimally independent and productive life. A broad definition of CSHCN is included in the language of this critical indicator Those are the CSHCN who have or are at increased risk for chronic physical, developm ental, behavioral, or emotional conditions and who require health and related services of a type or amount beyond that required by children generally (Maternal and Child Health Bureau, n.d.).

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11 Policy and Position Statements Policy and position statements have b een issued by various professional organizations addressing the need for transi tion services for these adolescents. They include the Society for Adolescent Medicine (Blum et al., 1993; Rosen, et al., 2003), American Academy of Pediatrics, (2000); and the American Academy of Pediatrics in collaboration with the American Academy of Family Physicians and the American College of Physicians-American Society of Internal Medicine (B lum, et al., 2002). Blum et al. (1993) ar e credited with the definition of transition as “the purposeful planned movement of adolescents and young adults with chronic conditions from childcentered care to adult-centered care” (p. 572). Th is original position paper issued by the Society for Adolescent Medicine described a duality of opinions related to the need for such transition programs. Some pediatri c providers believed the young adults with chronic illnesses should continue to be cared for by their pediat rician and the opposing school of thought suggested that these adolescents should be given the opportunity to mature into adulthood in a gr adual and purposeful fashion. Blum et al., (1993) suggest that the majority of health professionals were either uns ure of the issue or are only peripherally involved. In 1993, there were few m odel programs of tran sition. Blum et al. (1993) acknowledge the need for and lack of c ontrolled studies of tr ansition models and the lack of criteria to evaluate success. They propose that the succe ss of adolescents with chronic diseases transitioning in to adulthood must include a va riety of measures such as disease-specific measures, functiona l status and sense of well-being. Almost a decade passed before any professi onal organization again addressed the HCT of adolescents with special health care n eeds (ASHCN). The American Academy of

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12 Pediatrics (2000) addressed the role of the pediatrician in transitioning children and adolescents with developmental disabilities and chronic illnesses from school to work or college. The responsibilities of the pediatrici an are described as providing anticipatory guidance and promoting self-advocacy and se lf-determination for these children and adolescents. Although this statement primar ily focuses on educational and training opportunities, there is mention of a transition plan mandate d by the Individuals with Disabilities Education Act Amendments of 1997 that includes discussion of a medical home. The medical home mode l is introduced as a center that promotes “accessible, continuous, comprehensive, family-centere d, coordinated and compassionate care” (p. 855) while partnering with the adolescent, the family, and other community health and human services professionals. A consortium of professional groups that included the American Academy of Pediatrics, the American Acad emy of Family Physicians an d the American College of Physicians-American Society of Internal Medi cine (Blum, et al., 2002) jointly presented a consensus statement that was approved as policy by the boards of each of the organizations. They concurred with previous policy statements and added the caveat that developmentally appropriate healthcare serv ices should continue uninterrupted as the individual moves from adolescence to adulthood. The groups iden tified six critical first steps to ensuring successful tran sitioning to adult-oriented health care. These steps are summarized in Table 1.

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13 Table 1 Critical Steps to Ensure a Successful Transition Ensure that all ASHCN have an identified health care professional who attends to the unique challenges of transition and a ssumes responsibility for current health care, care coordination, and fu ture health care planning. Identify the core knowledge and skills required to provide developmentally appropriate health care tran sition services to ASHCN a nd include them in training and certification requirements for primar y care residents and physicians in practice. Prepare and maintain an up-to-date medical summar y that is portable and accessible. Create a written health care transition pl an by age 14 with the young person and family. The plan should be updated annua lly and include what services are needed, who will provide them, a nd how they will be financed. Apply the same guidelines for primary a nd preventive care for all adolescents and young adults, acknowledging that those w ith special health care needs may require more resources. Ensure affordable, continuous health in surance benefits for all ASHCN. The insurance should cover compensation for transition planning and core coordination. Note. ASHCN= adolescents with special health care needs. The Society for Adolescent Me dicine revisited the issue of HCT for adolescents and young adults in a second position paper (Rosen et al., 2003). Questions persisted related to effective strategies to assi st adolescents while engaging in the adult health care system. During the ten years from 1993 to 2003, m odels had been proposed and some implemented, but outcome data was still lacking and no evidence-based

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14 recommendations were made. Th ey acknowledged the “paucity of meaningful data” (p. 309) but presented several fundamental prin ciples of transitio n. These principles emphasized the need for health car e transition services to be de livered at the level of both the adolescent’s chronological and developm ental age. Emphasis was also placed on issues of growth and development; sexualit y; mood and mental health disorders; substance abuse; and other health promoti ng or health damaging behaviors that are similar to both healthy adolescents and those with a chronic illness. At the same time, they acknowledged that many adolescents with chronic conditions are at higher risk than their peers for dependency, developmental di fficulties and psychosoci al delays. Rosen et al. (2003) posited that a successful transiti on experience might prevent some of these difficulties and delays by pr omoting autonomy, personal respon sibility and se lf-reliance. They stressed the importance of designating a single professional to act as coordinator and advocate, who would take responsibility for the transition process. This designated professional would work in partnership with th e patient and the family to facilitate and streamline the transition experience. This id ea of a designated professional responsible for coordinating HCT was also included in the consensus statement from the American Academy of Pediatrics, the American Academ y of Family Physicians and the American College of Physicians-American Society of In ternal Medicine (Blu m, et al., 2002). These organizations identified the first “critical st ep” in HCT is ensuring that all ASHCN have an identified health care professional who “a ssumes responsibility for current health care, care coordination, and future he alth care planning” (p. 1385).

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15 These position papers used visionary phrases such as family-centered, continuous, comprehensive, coordinated, compassionate, culturally competent, and developmentally appropriate. These phrases ar e now consistently seen th roughout the HCT literature. Transition of Adolescents with Chronic Illness and Special Health Care Needs Young adults with cystic fibrosis, cerebra l palsy, epilepsy, sickle cell disease, juvenile arthritis, juvenile diabetes and spina bifida were some of the first populations to be studied (Reis & Gibson, 2002; Sawin, C ox & Metzger, 1999). Historically, the transition of youth and young adults with di sabilities and special health care needs from child-centered health care to adult-centered health care has been problematic (Blum, 1993; Reiss, Gibson, & Walker, 2005; Rosen, et al., 2003) and ofte n unsuccessful (Reiss et al., 2005). Adolescents with chronic conditions often exhibit dependency, developmental difficulties, and psychosocial delays (Pumariega, Shugart, & Pumariega, 2006; Rosen, et al., 2003). Blum (1995) described the higher th an average prevalence of depression and suicide attempts in adolescents with chronic illnesses. He suggested that these problems were grounded in social isol ation and loneliness which would often result in delayed social maturation. He reported lo wer self-esteem, higher anxiety, lower selfperceived popularity and greater self-consciousness in patient s that felt overprotected by their parents. As the formative research surrounding th e transition of adolescents with chronic illness and special health care needs bega n to emerge, the studies were primarily descriptive, qualitative designs. The transition ne eds of the adolescents and families, their perceptions and expectations were explor ed in anticipation of transition program development.

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16 Adolescents, families, pediatric and adu lt providers have provi ded insights into the transition process from their own unique perspectives. Numerous studies have attempted to identify potential challenges a nd barriers to the process. A common theme expressed by all participant gr oups addressed the scarcity of adult provider s interested and skilled in the care required by chronical ly ill young adults ( Houser & Dorn, 1999; McDonough, Foster, Hall, & Chamberlain, 2000; Reiss et al., 2005; S cal, Evans, Blozis, Okinow & Blum, 1999; Scal, 2002; Schidlow & Fiel, 1990; Sinnema, Bonarilus, Laag, & Stoop, 1988). Both adolescent and adult providers expressed concern about their lack of expertise in providing transition services as well as and a la ck of available training and resources (O’Connell, Bailey, & Pearce, 2003; Patterson & Lanier, 1999; Peter, Forke, Ginsburg, & Schwarz, 2009). Additional barrie rs were identified related to time restrictions and inadequate reimbursement for transition program development and the requisite interaction between adolescent a nd adult providers (Callahan, Winitzer, & Keenan, 2001; Geenen, Power, & Sells 2003; Peter, Forke, Ginsburg, & Schwarz, 2009; Reiss et al., 2005; Scal, 2002). A second commonly expressed area of con cern was the difficulty terminating the long-standing relationship between the adoles cent, his or her family and the pediatric health care providers (Houser & Dorn, 1999; Schidlow & Fiel, 1990; Sinnema, Bonarilus, Laag, & Stoop, 1988). This problem with “l etting go” was described from both the pediatric provider and the patient-family perspective. Another frequently mentioned concern was related to perceived differences between the pediatric care model and the adult care model (Callahan et al., 2001; Houser & Dorn, 1999; Schidlow & Fiel, 1990; Sinne ma, Bonarilus, Laag, & Stoop, 1988; Rosen

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17 1995). Pediatric providers routinely rely on a nd include input from the patient’s family while adult providers are more likely to co mmunicate directly with their patient. Rosen (1995) suggested that adult providers may be viewed by their pedi atric counterparts as being cold, distant and inatte ntive to global patient needs. He suggests that these perceptions may unintentionally be communicated to both the adolescent and their family which would increase their reluctance to tran sition. Notably, one study suggested that adult providers were better and more comfortable discussi ng sex, drug and alcohol issues and topic surrounding reproduc tion. Nasr (1992) a nd Geenen et al. (2003) presented similar findings through a different lens. They described the discomfort expressed by pediatricians when talking about sex, drugs and alcohol. There have been attempts to identify the most ap propriate professional to facilitate an adolescent transition experi ence. Several groups have suggested that physicians trained in Medicine-Pediatrics (med -peds) are best suited for transitional care (Callahan, et al., 2001; Melgar, Brands, & Sh arma, 2005). Flum, Taylor, Anderson, Gray and Turner (2004) suggest that transition efforts are more su ccessful when coordinated by someone other than a physician. Telfair, Alexander, Loosier, Alleman-Velez, and Simmons (2004) while comparing providers who care for patients with sickle cell disease found that nurse practitioners were more likely than other health care professionals to provide transitioning care. Several noted aut horities in the domain of HCT suggest that nurses are in the best position to successful ly coordinate transiti on efforts (Betz, 1998; Flume et al., 2004; Hauser and Dorn, 1999; Viner, 2000). Betz (1998) proposed models of HCT that used the school nurse, the nurse in traditional health care settings or the nurse practitioner functioning in key roles within the transition team. She described the

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18 school nurse serving as a memb er of the transition team involved in developing the Individualized Transition Plan required by federa l law in the Individuals with Disabilities Education Act [IDEA] of 1997. The school nurse could provide an assessment of the actual and potential impact of the student’s h ealth status on future education and training efforts. She discussed how the skills of nurses in traditional health care settings could be used to facilitate an improved collaboration between the schools and the health care team members. She described nurse practitioners as the primary care pr ovider who would act as the coordinator of transition services a nd could advocate for accessible services for the adolescents and their families. The nurse practitioner would provi de information and suggestions concerning adult providers and co mmunity services while working with the adolescents to assure the development of competencies necessary to become selfsufficient in managing their ow n health care as an adult. Betz (1998) also explained how the nur sing process could serve as a useful framework to develop a plan of care that addressed the a dolescent’s preventive, primary and long-term health considerations in a manne r congruent with the values and culture of the adolescent and their family. It would begi n with an assessment of the adolescent’s skills and knowledge necessary to assume res ponsibility for his or her self-care and the adolescent’s developmental readiness to assume this responsibility. Transition of Adolescents with HIV disease The Society for Adolescent Medicine has more specifical ly addressed the topic of transition for adolescents with HIV inf ection and AIDS in two position papers (D’Angelo, Brown, English, Hein, & Remafe di, 1994; D’Angelo, Samples, Rogers, Peralta, & Friedman, 2006). It is reasonable that the original pos ition paper in 1994 did

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19 not address the issue of transi tion to adult medical care becau se at that time a child or adolescent with HIV disease or AIDS was not expected to survive until adulthood. The life expectancy of a 20 year old that is dia gnosed with HIV disease is now estimated to be greater than 60 years of ag e (Antiretroviral Therapy C ohort Collaboration, 2008). This improved prognosis is the direct result of triple drug therapy pr otocols that were introduced in 1996. It is interesting to note th at 10 years after the introduction of triple drug therapy for HIV disease th at transition to adult care wa s not thoughtfully addressed in the 2006 position paper. Health care transition for HIV-infected adolescents ma y also be complicated by stigma, discrimination, forced disclosure and social isolation and may hinder adolescents from seeking the support of un familiar providers (AIDS Education a nd Training National Resource Center, 2006; Brown, Laurie, & Pao, 2000; HIV/ AIDS Bureau, 1999; Weiner, Zobel, Battles and Ryder, 2007). An adolescent, when asked to list the three greatest problems in his life w ith HIV stated, “Stigma, side effects and transition-absolutely. It’s an extremely difficult process” (Vazauez, 2006) In addition, adol escents with HIV may have experienced parental illness and loss, depression and behavior al issues such as truancy, school drop-out, and drug use (B rown et al., 2000; Pumariega, 2006). The psychosocial stressors that come with having HIV disease can make HCT a complex process. This combination of unique character istics and additional stressors suggests the need to determine if informat ion related to the transition of other patient populations can be transferred to the HIV-in fected adolescent population. Five studies have been identified that address the HCT of adolescents with HIV disease and AIDS from child-centered care to a dult care. One of the studies was set in the

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20 United Kingdom, one in British Columbia and th ree in the United States. Only one of the U.S. studies has been published (Weiner et al., 2007). Another ha s been submitted for publication (Vijayan, Benin, Wagner, Roma no, and Andiman, 2008) and the last was presented in a poster presentation at the 2008 International AIDS Conference in Mexico City. (Wagner, Murphy, Holmes, and Romano, 2008, August). Miles, Edwards and Clapson (2004) are credited with the first study that addressed the experiences of adolescents with HIV following transition to an adult HIV/AIDS clinic. The ad olescents had been transferred fr om a clinic that manages the largest cohort (n=142) of HI V-infected adolescents in th e United Kingdom to an adult HIV clinic that provides care for >2000 adults with HIV/AIDS. Seven adolescents were interviewed in this qualitative study that expl ored their experiences of transition between the two clinics. The participants included five males and two females, ranging in age from16 to 22 years. Four were perinatally infected with HIV and three were infected from blood products. The median number of year s in care at the pediatric clinic was 16 years. A semi-structured inte rview was designed based on a tr ansition literature review and the authors’ knowledge and experience providing care for a dolescent with HIV disease. A number of similar opinions and ideas emerged fr om the interviews. Seven of the adolescents stated that being introdu ced and beginning a prof essional relationship with an adult provider prior to the transition helped facilitate the pr ocess. Two situations were identified as the primary sources of anxieties and fear. The anxiety provoking situations surrounded disclosure of personal histories and HIV stat us. The anxiety was heightened when combined with fears associ ated with the adult cl inic setting. Several participants mentioned a concern su rrounding meeting and disclosing personal

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21 information to a new provider, particularly if multiple specialty pr oviders were needed. Other common sources of anxiety were the a dult clinic setting and adult patients. The adolescents described feelings of discomfort in areas of the adult clinic. One young man explained how being in an adult HIV setting w ould “force him to confront the inevitable growing older with HIV, knowing well that th e older he got, the longer he would have HIV and the higher the chance of developing ill ness” (p. 308). Several participants were surprised by the “all-adult waiting room covered with HIV specific posters and information” when they were used to “cart oon covered walls, games, play therapists and other children” (p. 309). Other participants verbalized surprise and discomfort when “sitting in a waiting room with a predomin antly gay male population” (p. 309). Based on these concerns, recommendations for future transition progr ams included a visit to the adult clinic prior to the tran sfer and creation of a specific young person environment with youth focused magazines, music and computer access in the waiting room. The adult clinic partic ipating in this transition program has established a specialist adolescent clinic st affed by a dedicated group of professionals that offer an improved continuum of care from the pediatric to the adult clinic. This team works with the adolescents to develop skills for managing their h ealth more independently. Preliminary data cited from personal comm unications suggest that the specialist adolescent clinic is improving regular clinic attendance and follow-up. Fielden, et al. (2006) report ed results of a study that examined issues affecting a select group of older children (9-16 years old) with perina tally-acquired HIV in British Columbia. The participants included 10 childre n, 6 familial caregiver s, 5 foster parents and 11 service providers. Focus groups and in -depth semi-structured interviews were

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22 used to generate the personal views of this group of stake-ho lders. The three themes that emerged were social stigma, mental hea lth and sexual health. Social stigma was identified as a negative and destructive infl uence. The concept of stigma emerged from vignettes that described fear, secrecy and isolation surroundin g trust and disclosure. One older participant explained her apprehensions about disclosure by stating, “I don’t want to be the center of attention and everybody is like, Oh, lookit! [ sic ] There’s the girl with HIV…and I’d rather people see me as Lucy, than people see, Oh, Lucy with HIV” (p. 1051). Similar feelings were associated with discussions surrounding sexual health. Several of the older children revealed th ey had already had sexual experiences. Information related to whether or not they had disclosed thei r status was not included in this report. Concern was expre ssed that there was fear of ma intaining a relationship when their HIV status was disclosed to a boyfri end or girlfriend. One of the health care providers offered a different perspective by emphasizing the need for positive feelings surrounding sexuality. She state d, “I think [it’s important to ] to give them a positive approach to their sexuality…it can get tainted so easily” (p. 1051) The possibility of mental health prob lems originating with opportunistic infections, fetal alcohol syndrome and poor so cio-economic status wa s also suggested in the work by Fielden et al. (2006). Discussi ons were permeated with references to bereavement, loss of parents, feeling normal, security, self-esteem and the need for a positive attitude. Parents and care-providers e xpressed the need for the children to feel normal despite their HIV.

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23 Fielden et al. (2006) described this p opulation as being “in hiding” due to the experience and fears of HIV-associated stigma. They emphasize the need to identify strategies to build self-esteem and support h ealthy sexual development. They confirm the need for policy development and services th at address partner di sclosure and family planning. The authors acknowledged the lack of generalizability of the findings but suggest the finding may be useful to inform future research. Weiner et al. (2007) conducted an interv entional study that co mpared readiness to transition and anxiety associated with transition in a sample of HIV-infected adolescents enrolled in a National Institutes of Health (NIH) Clinical Research Program. At the time of the study, the announcement had been made th at the clinic would be closing within the year due to a funding reallocation. Interv iews were conducted with 51 families (39 parents or caregivers and 12 older adol escents between 18 and 25 years of age). Transition readiness and state anxiety were m easured in a nonexperimental pre-post test design. Transition readiness was measured using a ques tionnaire designed by the investigators based on obstacles to successful tr ansition that were prev iously suggested in the literature (Betz, 1998; Houser & Dor n, 1999). State anxiety was measured using Spielberger’s State/Trait Anxi ety Inventory for Adults. The intervention was designed to individually address any barrie rs that had been identified during the interviews. The barriers identified were related to needing a physician in their ho me community, lacking confidence in the home community physician, n eeding health insurance, lacking funds to cover out-of-pocket expenses, needing a social worker in their home community, needing a pharmacy in their home community, and a kno wledge deficit related to HIV disease or medications. Social workers attempted to address issues related to funding,

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24 transportation, and pharmacy access. The medi cal providers took responsibility to contact the future adult provider and addre ss any HIV-specific knowledge deficits. As hypothesized, poor readiness scores were associated w ith increased state anxiety levels and a lack of confidence in the medical providers in their home community. Approximately one third of partic ipants had poor or moderate scores of transition readiness at T1, while none scored in these categories at T2. By the time transition [or transfer of care] occurred, all participants scored in the good to excellent range of readiness. Thirty percent of participan ts scored above the clin ical cutoff for state anxiety at T1 and twenty per cent scored above the cutoff at T2. Concepts and feelings frequently mentioned in the in terviews included loss, upset, frightened about the future, feeling abandoned, concerned about receiving a lower leve l of care, lack of HIV knowledge elsewhere and lack of monitori ng of HIV patients at home. The authors concluded by suggesting that social work ers are uniquely qualified to address the psychosocial needs, emotional barriers, resi stance to transition, resource acquisition, and promotion of life-skills developmen t in this population of adolescents. Vijayan, Benin, Wagner, Romano, and A ndiman (2008) conducted a qualitative study to identify and describe issues surrounding the transiti on of adolescents attending the Yale-New Haven Hospital pediatric HIV clinic. The sample included 18 adolescents with HIV, 15 of their principal guardians, a nd 9 pediatric health care providers from the Yale Pediatric AIDS Care Program. Each participant was interviewed by a single investigator not affiliated with the clinic. Open-ended questi ons with probes to elicit feelings and ideas related to the transiti on of care were used. Additional information regarding history of sexual activity and dr ug use was collected using a confidential

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25 written questionnaire. Each participant also completed a health literacy test used to predict a level of potential self-efficacy and autonomy w ith regard to healthcare. Vijayan, et al. (2008) identified two ma jor themes during the analysis and were categorized as challenges cari ng for adolescents with HIV a nd barriers to transitioning adolescents to adult-oriented health care systems. Sub-categor ies emerged from each major theme and are presented in Table 2. Table 2 Challenges and Barriers to HCT in Adolescents with HIV disease Challenges to Caring for Adolescents with HIV Difficulties with adhering to medication regimens Difficulties managing adolescent sexuality Negotiating disorganized social environments Potential barriers to transitioning adolescents to adult-oriented health care systems Families’ negative perceptions of and experiences with HIV* Perceived lack of autonomy Difficulty letting-go Note. *= The authors attributed thes e specific difficulties to perceived stigma of HIV disease and disclosure of th e adolescent’s HIV status. The challenges of caring for adolescents with HIV disease emerged from each group of participants. Specific issues related to medication adherence were described by the adolescents themselves and included conf usion about the need to take medication when feeling well, feeling a constant remi nder of the diagnosis when taking medication and the fear of accident al disclosure of their status when taking medication around their

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26 peers. The challenges associated with adol escent sexuality were identified by both the adolescents and the providers. The feelings of the adolescents were primarily linked to disclosure of their HIV status. Four of the 18 adolescents reported having had sexual intercourse and none had disclosed their status to their last partner. Twelve of the adolescents confirmed an ongoing peer pressu re to have sex. The pediatric providers expressed concerns of their lack of experience with sexua l health matters, gynecologic care and the legal complexities of partner notification. The disorganized social environments of the adolescents were pr imarily related to witnessing drug abuse, incarceration and frequent death of a parent w ith AIDS as well as exposure to foster care and adoption services at an early age. The notion of stigma also emerged as a component of the potential barriers to transition to adult care. The adolescents and their guardians described multiple negative experiences surrounding the dia gnosis of HIV. The adolescen ts described experiencing stigma and discrimination with in their social networks, in cluding extended family, other clinic and school setting. They reported fear a ssociated with trusting in dividuals outside their immediate social circle. Unfort unately, this distrust and fear was also mentioned when discussing potential adult provid ers. Providers expressed con cerns about the adolescents’ lack of autonomy. These adoles cents were never encouraged to be independent because they were never expected to live to reach adu lthood. “They were never taught the life skills necessary to survive in an adult world” (Vijayan, et al., 2008, p. 11). Adolescents, guardians and providers desc ribed a difficulty of letting-go of the relationships that had developed, in many instances, over the entire lifetime of the adolescent. There was a fear that the adult cl inic setting and the adu lt providers would not

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27 provide a comfortable, non-pressured experience similar to that in a pediatric setting. The pediatric providers conveyed th e fear that the adult HIV clinic may be less welcoming and that the waiting room could be frightening for the adolescent. Another of the HIV-specific transition reports descri bes a transition program for perinatally and behaviorally HIV infected a dolescents that began in 2006. An abstract was presented in a poster exhibition at the In ternational AIDS Society meeting in August, 2008 describing the transition program at Yale -New Haven Hospital, an urban, academic tertiary-care hospital with both pediatric and adult HIV clinics (Wa gner, K., Murphy, A., Holmes, J., & Romano, S., 2008). The program includes a pediatric Nurse Practitioner who assesses the adolescent’s readiness to tr ansition, a single adult provider that accepts the adolescent into adult care, an introduction of the adolescent to the adult provider prior to the first appointment, a social worker who is shared by the pediatric and adult clinic to continue to manage the adolescent’s complex psychosocial needs, and a multidisciplinary team including clinic nurses and home nur ses who provide outreach and support for missed appointments and me dication non-adherence. The Panel on Antiretroviral Guidelines for Adults and A dolescents from the Department of Health and Human Services (DHHS) updated the Guidelines for the Use of Antiretroviral Agents in HIV-1-Infected Adults and Adolescents in November, 2008 (Panel on Antiretroviral Guidelines, 2008). Th ese guidelines are considered to be the standard of care for the management of HI V disease and AIDS. This revision contained the first discussion of transitioning adoles cents with HIV to the adult care setting. Differences between a teen-cen tered, multidisciplinary, pr imary care adolescent clinic and a larger adult clinic that uses a subspecialty model are contrasted. DHHS

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28 recommendations to facilitate a successful transiti on are listed in Table 3. No operational definition of successful transition was included. Table 3 Department of Health and Human Services Recommendations to Facili tate Successful Transition Optimizing provider communication betw een adolescent and adult clinics Addressing patient/family resistance cause d by knowledge deficits, stigma or disclosure concerns, and diff erences in practice styles Preparing youth for life skills develo pment, including counseling them on the appropriate utilization of a primary care provider a nd appointment management, the importance of prompt symptom recognition and reporting, and of the importance of self-effic acy with medication management, insurance, and entitlements Identifying an optimal clinic model fo r a given setting (i.e., simultaneous transition of mental health and/or case management versus a gradual phase-in) Implementing ongoing evalua tion to measure the succe ss of a selected model Engaging in regular multidisciplinary case conferences between adult and adolescent care providers Implementing interventions that may be associated with improved outcomes, such as support groups and mental health consultation Incorporating a family planning component into clinical care Note. Panel on Antiretroviral Guidelines fo r Adults and Adolescents, 2008 (p. 75).

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29 Current State of the Science As recently as 2008, Cecily Betz, Ph.D., a nurse researcher who has worked for over 35 years with children and their families who have special health care needs and disabilities reinforced the urgency of the problem and gr owing needs of this population when she stated: The critical mass of need evidenced by th e growing numbers of adolescents with special health care needs (ASHCN) requiri ng transition services from a system of care still unprepared to meet them can no longer be ignored or tolerated. Youth and families have long experienced the frust ration of this service inadequacy, are now being joined by increasing numbers of health care professionals, advocacy organizations, and health care institutions to effect the system changes needed (p. 13). Betz (2008) described the continued cha llenges in conducting research in the area of HCT. Cited were inconsistencies in the data published from national surveys conducted with CWSHCN and AWSHCN. Th ese inconsistencies included sample characteristics that varied based on different definitions of chronic illness and disability and data collected on multiple variab les with inconsistent definitions. Perhaps the most challenging issue involves the inability to track these individuals after they were transferred in to the adult health care syst em. As a general rule, data collected by one agency cannot be linked or accessed by another agency and there is no universal database pertaining to this population. Notable excep tions to this rule are found in countries with national registries of in dividuals’ health data associated with a

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30 nationalized health insurance program such as the United Kingdom, France, Denmark, the Netherlands, and Canada (Betz, 2008). Only one study was identified that re ported a definition and measure of a “successful” transition. A Canadian study reported on the successf ul transition from pediatric to adult health care of a cohort of young adults with congenital heart defects (Reid, Irvine, McCridle, Sanane s, Ritvo, Siu, et al., 2004). A cohort of patients with complex congenital heart defects was identifi ed from the database of the cardiology program at the Hospital for Sick Children in Toronto, Canada. The sample consisted of all patients (n=360) aged 19 to 21 years of age with complex conge nital heart defects. The Canadian Adult Congenital Health (CACH) Network define d successful transition as at least one follow-up appointment at a CACH center before the age of 22. In the total cohort of 360 young adults, 47% (CI: 42-52) met this criterion for successful transition. In a recent report, Lotstein et al. (2009) presented re sults from the 2005-2006 National Survey of Children with Special H ealth Care Needs. The Maternal and Child Health Bureau made receipt of transiti on services a core pe rformance outcome for community-based systems of care for youth w ith special health care needs. Parents or guardians of 18,198 youth with special health care needs (aged 12-17) were asked if specific topics had been discussed with thei r child’s health care pr ovider. These topics included four outcome measures that all must be met to meet the overall transition outcome. The topics included discussions about future adult providers, future adult health care needs, changes in health insurance, and encouraging their child to take responsibility for his or her care. Overall, 41% of youth with special health car e needs met the overall transition outcome. Individual indicators pr ovided a more detailed view of the survey

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31 results. Forty-two percent of respondents reported discussing transfer of care to an adult provider, 62% discussed their ch ild’s future health care need s, 34% discussed prospective changes in health insurance and 78% reported that their pediatric provider usually or always encouraged their child to take respons ibility for his or her own health. In this sample, the sub-populations of the children that included non-Hispanic black, Hispanic, lower income, non-English speaking and without a medical home were less likely to meet the transition outcomes. Notably, these outcome s were measured prior to the transfer of care to the adult setting and do not refl ect the “success” of the transition. Viner (2008) acknowledges the paucity of transition program evaluation but stresses: We should not wait for ri gorous evaluation evidence before instituting programs that ensure that adolescents are adequate ly trained is disease self-management and that a plan is in place to ensure their disease control or qua lity of life does not suffer in the move from pedi atric to adult services. Summary As noted in Chapter One, there are no reports that describe current transition processes and practices used in adolescent HIV clinics in the United States. This lack of empirical data combined with the increasi ng numbers of HIV-inf ected youth makes it imperative to examine the HCT process in this population. Furt her understanding how HCT affects both perinatally infected and behaviorally infected adolescents may ultimately allow providers to improve care for this vulnerabl e population. It is important to first describe the current practices of HCT and to attempt to iden tify facilitators and

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32 barriers to the process. This formative research is essen tial to provide a foundation for future studies that will attempt to identi fy and validate evidence-based practice models.

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33 Chapter Three: Methods Introduction The purpose of this chapter is to describe the research methodology and analytical processes that were used in this study. Sections addr essing the study design, bias and preconceptions, population and sa mpling strategy; data collection and management; data analysis and ATLAS.ti procedures are included. Design of the Study There are no reports in the literature th at attempt to describe the process of transitioning HIV-infected adolescents from child-centered care to adult-centered care. Qualitative data has often been advocated as the best strategy for “discovery, exploring a new area, and developing hypotheses” (Miles & Huberman, 1994, p. 10). Speziale and Carpenter (2007) contend that qualitative resear ch is appropriate to discover, describe, interpret and understand human experiences. A qualitative descriptive study design was used to begin to explore this phenomenon. Qualitative research is often able to capture some of the issues that cannot be captured by aggregate statistics and can provide ideas and hypotheses for future study (Robson, 2002). This project was a secondary analysis of data previously collected during a pilot study conducted in 2007 by this researcher A preliminary analysis of the data was completed and the findings reported. This secondary analysis was completed using ATLAS.ti, 5.5.9, a qualitative data management software program (Muhr, 2004). This

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34 secondary analysis, with the assistance of th e tools available in ATLAS.ti, facilitated a more thorough analysis of the data through a variety of computer assisted lenses. Bias and Preconceptions Potential conflicts exist when the researcher has the conc urrent role of participant and thus an insider to the research proce ss. Robson (2002) labels this position as the “researcher-as-instrument” (p. 217) and describes the roles of investigator, collaborator, facilitator, and participant. He describes th e significance of the researcher’s perceptions and how they can be affected by perspectives from the various roles. It is difficult to prevent bias in these perceptions and this potential for bias must be acknowledged. This researcher is an adult nurse pr actitioner who has provi ded primary care to adults with HIV disease in th is community for the past 10 y ears. During the last several years, the number of adolescents with HIV disease transferring from a pediatric childcentered setting to an adult health care sett ing has increased. During a standard admission to the adult clinic, this re searcher had no introductions or interactions with the adolescent’s clinic prior to the admission appointment. This researcher began to characterize some of these a dolescents as unmotivated and poorly educated about their disease and self-management. Assumptions we re made that the adolescents could not manage to get to appointments on time, if at all, and did not appear to be engaged in learning or practicing preventiv e health care appropriate for young adults. This researcher made the assumption that these behaviors may have been partially related to the unstructured pediatric environment and the pr oviders that coddled and pampered these adolescents and continued to treat them as children.

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35 During a portion of this time period, this researcher was working in a unique practice setting where she was invited to act as an informal liaison between the University Adult Immunology Clinic and th e University Pediatric HIV/AIDS clinic. Those two different experiences resulted in recognition of previous biases and preconceptions held by this researcher. Interacting with the adolescents in the pediatric/adolescent setting resu lted in the realization of th e extensive effort spent to educate and prepare these patients to manage their disease and to function independently. Some of these patients were very successful and others were not. This researcher attempted to bracket these biases, preconcep tions, and experiences on “both sides of the street” before initia ting this study. Study Population Currently an estimated 19,979 adolescents between the ages of 13 and 24 are currently living with HIV or AIDS (CDC 2008). The majority of HIV infected adolescents receive their medical care in a pediatric or child-cen tered medical setting (Adolescent Trials Network, n.d.). The population of interest is HIV-in fected adolescents who are transitioning or will be transi tioning from a child-centered health care environment to an adult-centered care envi ronment. Since the beginning of the HIV epidemic, HIV-infected children were cared for by universitybased clinicians as well as designated HIV specialty providers at the Natio nal Institutes of Health (Adolescent Trials Network, n.d.). The Department of Health and Human Services (DHHS) Panel on Antiretroviral Guidelines recently updated the recommendations for the treatment of HIV-1-infected adults and adolescents (Pan el, 2008). The guidelines continue to stress that better outcomes are ach ieved in HIV-infected outpatie nts cared for by a clinician

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36 with HIV expertise. The majority of HIVinfected adolescents, both perinatally and behaviorally infected, continue to be medically managed by HIV-specialists at universitybased clinics. Sampling Strategy Patton (2002) explains “the logic an d power of purposeful sampling lie in selecting information-rich cases for study in depth”, (p. 230). These information-rich cases can reveal important details about issues related to the purpose of this inquiry. This detailed information, frequently re ferred to as thick and rich, can provide insights and indepth understanding of the issues being investigated. The purposeful sample identified for this study was a selected group of repres entatives from clinics affiliated with the Adolescent Trials Network of HIV/AIDS In terventions (ATN). Representatives (key informants) from these clinics were selected becaus e of their knowledge, experience and expertise in developing systems of care for a dolescents with HIV. The ATN is a national, collaborative clinical trials network established by the Pediatric, Adolescent, and Maternal AIDS Branch of the National Institute of Child Health and Human Development in 2001. This group of clinics is affiliated with some of the most prestigious academic medical uni versities in the United States and represents the largest cohort of HIV-infected adolescents in the United States. Th e ATN conducts both independent and collaborative research, with co-funding from the National Institute on Drug Abuse, the National Institute of Ment al Health, and the National Institute on Alcohol Abuse and Alcoholism, through a cooperative agreement mechanism. The University of South Florida College of Medi cine, Department of Pe diatrics, Division of Infectious Disease is an Adolescen t Trials Network clinical site.

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37 All eligible ATN clinics were invited to participate. Due to language and transcription problems in Puerto Rico and the severe disruption of services at the Tulane clinic in New Orleans resulting from Hurrican e Katrina, these two sites were not included in the sample. The Principal Investigat or at each ATN site (Appe ndix A) was contacted and asked to identify one to three representatives from their site who they considered the most knowledgeable staff member (s) involved with their clinic’s transition practice as well as those having the most experien ce with their clinic’s prac tice related to transition. Data Collection and Data Management Tools and Procedures. Patton (2002) lists various type s of questions that can be used in interviews. He provides examples of questions that focus on experiences, activities, or behaviors; opinions and values; feelings; knowledge; background and demographic information. A 37-item semi-struct ured interview tool (Appendix B) was designed by a multidisciplinary team e xperienced in the comprehensive care of adolescents with HIV disease. The interv iew tool was designed in 2006 in preparation for a grant application. This team was designated PSC 060 by the ATN during preliminary funding efforts. The PCS 060 team members are academic clinicians and researchers at university-affilia ted clinics in the United States that include the University of South Florida, Johns Hopkins University and the Universi ty of Pennsylvania. Contact information for each of th e PCS 060 protocol team is found in Appendix C. The interview tool was designed to collect information about the ch aracteristics of the clinics, the patient populations served by the clinic and the practice models currently being used in the transition of their patie nts to the adult care setting. They were invited to share their

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38 personal and collective views of the concept of transition and to describe anything that might be considered a barrier or facilitator to the pr ocess. While interested in whether the ATN sites have written transition policies, it wa s also important to ga ther information not available in written documents that might include the use of additional practices or procedures or practices and pr ocedures that differ from those that appear in written documents. All interviews were conducted by this researcher. The designated representative/s from each of the ATN clinics was contacted by email to schedule a 60 minute block of time for the telephone in terview. The interview tool was di stributed electronically prior to the telephone interviews. Verb al consent for both particip ation and recording of the interview was obtained. Institutional Approval. Based on the Code of Fede ral Regulations, Part 46: Protection of Human Subjects, th is study was granted an exempt status by the University of South Florida Inst itutional Review Board (IRB). This exemption was granted based on Subpart B (4) which states that “Research involving the collection or study of existing data, documents, records, pathological speci mens, or diagnostic specimens, if these sources are publicly available or if the information is recorded by the investigator in such a manner that subjects cannot be identified, di rectly or through identifiers linked to the subjects”. The IRB also waived the need for informed consent based on this study as an internal quality improvement initiative that would not collect any personal identifying information on human subjects. IRB approval was obtained from the University of South Florida IRB on February 10, 2007 for the orig inal study (Appendix D). The IRB Exempt Certificate number is 105455F. The application was revised and resubmitted in July,

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39 2008. This revision reflects the extension of the project completion date to July 1, 2009. The revision was resubmitted and approved on August 6, 2008 (Appendix E). Collaborative Agreements. Relevant leadership groups within the ATN and respective site leadership agreed to this research collaboration. A Memorandum of Agreement (Appendix F) was initiated betw een the Adolescent Trials Network for HIV/AIDS Interventions and Patricia Gillia m, MEd, MSN, ARNP, Un iversity of South Florida, College of Nursing doctoral student Co-Principal Inves tigator; Diane Straub, MD, MPH, Associate Professor of Pediatrics and Chief of the Division of Adolescent Medicine, Co-Principal Investigat or and the PSC 060 Protocol Team. Consultative support. Nicholas Woolf, PhD provide d consultation related to ATLAS.ti during the design and analysis of th is project. Additional support was provided by members of PCS 060 protocol team. Data Management and Storage. The interviews were digitally recorded and copies of each recorded interview were stored on an external flash drive. Written policies and procedures as well as other documents specifically related to transition were requested and when received were electr onically scanned into PDF documents for analysis. These PDF documents were also stored on an external flash drive. The first four interviews were transcribe d verbatim by the primary researcher. The remaining 10 interviews were professiona lly transcribed by Hiredhand or Production Transcripts. Dr. Jon Ellen a nd Dr. Lori Leonard, members of the PSC 060 pr otocol team, assisted in the funding of thes e transcriptions. The transcribe d interviews were returned to the primary researcher electronically in WORD format. When each document was returned, its contents were reviewed and compared to field notes taken during that

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40 interview. Several of the transcripts containe d words and phrases that were marked by the transcriber as inaudible. These sections were reviewed and compared to the audio recordings to confirm thei r completeness and accuracy. Electronic copies of all transcripts were transferred to the external flash drive to se rve as a backup data source. A set of the electronic intervie w transcripts was retained by Diane M. Straub, M.D., who served as one of the secondary coders. Data Analysis The purpose of data analysis in qualitative research is to impose some order on the large volume of data that are collected. An alysis provides clarific ation of the essential interpretations of the raw data (Miles & Huberman, 1994; Speziale & Carpenter, 2007). The transcribed interviews were copied a nd abridged to include notes taken during and immediately following each interview. These notes included ideas that this researcher wanted to clarify or follow-up as well as any intuitions by the res earcher relating to the participants tone and feelings toward the interview question or the project in general. Attention was given to inconsistencies, subtle ties of tone or hesitancy to discuss certain topics. Accurate interpretation of qualita tive data is considered context dependent (Patton, 2002). An effort was made to assess factors such as the participants’ support of this project which was conducted by a resear cher who was not an adolescent provider and was not directly affiliated with an ATN clinic Thoughtful consideration to the data requires several “reads” according to Mason (1996). Literal reading of the data involves the “form, content, structure, style, layout…words and language used, the sequence of interaction, the fo rm and structure of the dialogue, and the literal content” (M ason, 1996, p. 109). A second interpretive read

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41 involves expanding beyond the literal content to allow inferences in an attempt to understand the meaning for each of the persons interviewed. Each of the transcripts was read through a minimum of th ree times prior to beginning di ssection and sorting of the data. An a priori coding framework was prepared prior to the preliminary analysis. This framework was generated using the research questions and interview schedule. It was reviewed by the researcher and two of the doctoral committee members and modified until a consensus was reached. These a priori codes are listed in Table 4. Table 4 A Priori Coding Framework Views of Transition Theo retical Constructs/ Framework Age-appropriate Self-efficacy Developmental Readiness Team approach Stigma Holistic Stages of Change Transition to adult life vs. adult care Health Beliefs Discipline Specific Notes Facilitators MD Guidelines/processes ARNP Charting Tools RN Patient Education Tools Mental health counselor Acces s to mental health services Case manager Access to social worker Social worker Established relationship with adult provider Health educator Location of adult clinic Decisions Points Barriers Age Financial/funding constraints Medical complexity Low availa bility of adult HIV care providers Gender Transportation issues

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42 Table 4 (continued) Decisions Points Barriers Sexual orientation Lack of social support or family support Cognitive/developmental delays Re sistance to transition: patient Psychosocial Resistance to transition: provider Mental health Substance abuse ATLAS.ti Becoming Familiar with ATLAS.ti. The researcher atte nded a 2-day training session in September, 2007 presented by Nichol as Woolf, PhD, a consultant and trainer in both qualitative analysis and ATLAS.ti soft ware. Immediately prior to beginning the analysis using the ATLAS.ti data management software, the researcher attended a 2-day refresher workshop also offered by Dr. Wool f. The workshop materials as well as the web-based ATLAS.ti Technical Manual were ac cessed during the initi al start-up of the analysis. Ongoing consultation regarding HU design, query, and output issues was provided by local experienced researcher s familiar with ATLAS and Dr. Woolf. Document Management. Electronic versions of each transcript were imported into a dedicated project folder within ATLAS.ti in the requisite rich text format (RTF). The location of the folder and its unique path se rved as the permanent location of these files for all future access by the functional component of ATLAS.ti known as the ”hermeneutic unit” (HU). Afte r importing into this project file, the individual RTF files were never re-opened to prev ent file corruption. The project HU was created and stored within this folder. Daily work in the HU was electr onically archived with a file name describing the analysis performed that day.

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43 Coding Methodology and Framework. The ATLAS.ti data analysis program provides tools to manage, extr act, compare, and explore vast amounts of data. The data can be partitioned into various text passage s and then reassembled to focus on specific themes or to answer specific research questions. There are two principal levels available for the analytical work performed in ATLAS.ti. There is the Textual Level that includes activities of segmentation of data file, coding text and writing memos. The second Conceptual Level focuses on combining c oncepts and model-building activities. “Families”, “supercodes” and “networks” are the ATLAS.ti tools that are used to filter data, combine concepts, identify patte rns, and build models (Muhr, 2004). The first step in this analysis consiste d of a Textual Level activity that segmented sections of the interview transcripts into unc oded text passages. These text passages were selected as representative of the priori themes and specific responses to the research questions in the study. These quotations were marked but not code d during this iteration. The selected text passages were marked to provide a document that was later coded by one of the researcher’s doctoral committ ee members proficient in ATLAS.ti. This additional coding provided a check on the repr oducibility of the coding framework. This activity provided investigator triangulation using two differ ent researchers (Patton, 2002). During this iteration, an ATLAS.ti “mem o” was used to catalog a list of codes that would be considered for use during the analysis. A code that is generated but no attached to a text passage is known as a “ free” code within the ATLAS.ti program. This list of “free” codes was populated with frequent ly used or provocative words identified during this read of the data set. The original list of “fr ee” codes totaled 122 and can be seen in Table 5. This list of “free” codes wa s compared to the a pr iori codes previously

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44 used in the manual coding of this data set. Any of the original codes that were not contained in this list of “free ” codes were added. These “fr ee” codes were then reviewed for relatedness and redundancy. Table 5 Original List of “Free” Codes (n =number of coded text passages) demographics (n=93) !description /models of care (n=86) !QUOTATION (n=51) !role (n=39) !social support (n=22) !view/opinions (n=26) $criteria for transition (n=29) $differences in transition (n=43) adherence/nonadherence (n=6) admi* (n=0) adult clinic (n=48) age of clinic population (n=1) anger (n=0) anonym* (n=18) ARNP (n=22) ARNP-Mary CHOP (n=8) ARNP Hannah & Donna (n=1) ARNP/LCSW (n=1) assist* (n=10) barrier* (n=15) cognitive (n=16) confidential* (n=1) counseling (n=51) ER (n=0) extra question (n=0) facilita* (n=10) Failed transition (n=21) find out (n=0) follow* (n=0) funding (n=4) gay (n=15) gender (n=2) guidelines (n=0) GUIDELINES:=guideline* (n=205) hand" off (n=0) Health Educator/outreach (n=1) hinder* (n=0) HIPAA (n=2) hold on (n=1) holding on (n=0) homeless (n=3) HOSPITAL:=hospital* (n=28) in the way (n=22) insurance (n=25) models of care (n=0) Motivational Interv (n=1) MSW (n=1) open door policy (n=4) option to transition (n=5) peer (n=4) perinatal/behavioral (n=24) pregnancy (n=23) prev for positives (n=1) PRIVACY:= priva* (n=28) procedure* (n=0) proceed* (n=0) process vs. event (n=5) process* (n=8) Program Manager, BS (n=1 protocol* (n=0) refer* (n=18) relationship, long (n=5) Research Coord.-BSN (n=1 return p transition (n=23) scale of 1 to 5 (n=14) sexual orientation (n=0) shame (n=0) Social Worker (n=2)

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45Table 5 (continued) criteria for transition (n=15) developmental (n=51) difference in adult and pediatric models (n=5) disclos* (n=1) disenfranch* (n=0) document* (n=3) drug use (n=10) ED (n=0) emergenc* (n=0) EMOTION:=abandon* (n=18) interest in the study (n=10) keep* (n=0)length of transition (n=8) let go (n=0) letting go (n=0) life skills (n=19) location (n=5) marginal* (n=1) MD (n=3) MD interview/ NP transition point person (n=1) medically complex (n=19) Mental Health Counselor (n=4) mental health problems (n=7) SW (LCSW) (n=3) SW (MSW/MPH) (n=1) stigma* (n=5) succes* (n=89) SW-LCSW (n=5) track* (n=16) transfer* (n=1) transgender* (n=9) unit (n=0) youth, not adol (n=0) Note. n = number of text passages captured using “autocoding” feature Several frequently occurring concepts were identified while reviewing the original list of free codes. The concepts we re discussed within the interviews using a variety of synonymous words and phrases An ATLAS.ti programming tool known as “supercoding” was used to identify all text passages that contained synonymous words or phrases for these concepts. “Supercodes” ar e formulas, similar to macros in other software applications that when activated will query all the HU documents (transcribed interviews) and retrieve text passages that contain any of the individual components of the “supercode” (Muhr, 2004). The primary researcher identifie d four frequently

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46 occurring concepts and constructed “super c odes” that were used to code for any variation in the presentation of the concept. These “supercodes” are listed in Table 6. The supercodes PRIVACY, HOSPIT AL, and EMOTION were cons idered emerging themes that did not directly relate to any of the research questions. Table 6 Super Codes GUIDELINES:=guideline*|process*|protocol* |document*|proceed*|track*|follow*|keep* PRIVACY:=priva*|HIPAA|confiden tial*|anonym*|disclos*|find out HOSPITAL:=hospital*|unit| emergenc*|admi*|ED|ER EMOTION:=emotion*|abandon*|disenfranchi*| marginal*|letting go|let go|holding on|hold on| fear|stigma*|anger|shame Note. is an ATLAS.ti programming symbol for a wild card or alternate endings to the root word that precedes the *. The pipe symbol, | is an ATLAS.ti programming symbol for the Boolean operator “or”. The “autocoding” feature in ATLAS.ti wa s used during the first pass of coding the data set of transcribed interviews. “Autocoding” system atically processes through the documents and assigns the code to any pass age that contains a specific word or a derivation of the root of the word followed by the sy mbol (Muhr, 2004). The volume of text contained in each automatically selected passage was defined by the researcher to include the entire paragraph that contained the word or its derivative. The documents were originally autocoded using each of the four “super codes” followed by “autocoding” using each of the individual codes.

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47 The frequency of text passages associat ed with any “supercode” or individual code ranged from 0 to 205. Twenty-two of the original codes did not attach to any text passages during the first iteration of “autocodi ng”. These codes were deleted from the list of active codes. Text passages associated with a code that identified less than ten passages were reviewed. In several instances the passage had also been autocoded with another more relevant code. In those cases the more relevant code was retained and the less frequently assigned code was “unlinked”. Note that this “unlinking” did not lose the passage, it simply left the passage “linked” to the more frequently applied and relevant code. Several of the codes that identified less than ten text passages considered relevant and/or unique ideas and were re tained with no modifications. After this consolidation of the code list, a more parsimonious list of 64 codes remained. The codes were then assigned to categories that represented an a priori theme, a research question or an emerging theme. The final list of codes and categories can be seen in Table 7.

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48 Table 7 Final Categories and Codes Role & Credentials Characteris tics of Transition Social Factors ARNP Criteria for tran sition Social issues MD Differences in tr ansition So cial Support MPH Documentation Support Groups MSW Length of transition Social Worker LCSW Transition as an option Social Medicine BS Social Work Models of Ca re Social Cognitive Theory BS Nursing Referral Sites BS Public Health Rank of difficulty Health Educator Program Description Mental Health Counselor Return after transition Peer GUIDELINES Case Manag* Nurs* Role Facilitators Barriers Miscellaneous Assist* barrier* Demographics Developmental adherence/nonadherence Gay Facilita* Adult clinic Homeless Life skills*** Cognitive delay Interest in the study Success* Drug use Motivational Interview Failed Transition Peer In the way Perinatal/Behavioral Insurance Prevention for Positives Medically complex Process* Mental health problems Transgender* Long standing relationshi ps View of transition Stigma Quotation Track* HOSPITAL*** EMOTIONS PRIVACY Note: is an ATLAS.ti programming symbol for a wild card or alternate endings to the root word that precedes the *. Supercode s are presented in all capital letters. *** = emerging theme.

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49 Each of the interviews was re-read a nd the most applicable code was manually assigned if that passage had not previously been coded. This occurred if the passage did not contain the exact word or a derivativ e that would code while operating in the “autocode” mode. It was during this pass of the data that any text passage that was considered particularly rich was identif ied by the code, QUOT ATION. Fifty seven quotations were coded and exported to a WORD document for later review and consideration for inclusion in to the discussion section. Rigor, Credibility, and Confirmability Lincoln and Guba (1985) suggested that quality in qualitative inquiry can be assured by credibility, transferability, depe ndability and confirmab ility. These concepts serve to replace the conventional positivist quality indicators of internal validity, external validity, reliability and objectivity. Patton (2002) similarly discussed credibility and rigor as the benchmarks for qualit y in qualitative research. Rigorous methods of both data collecti on and analysis were employed throughout this research study. Rigor ous investigation was supported by the credibility of the researcher, PCS 060 protocol team member s, and doctoral committee members who are all experienced researchers in their respec tive academic communities. Rigor in the data analysis was achieved through triangulation of both method and analysts. Triangulation of methods included use of both the interview transcri pts and supporting documents supplied by the clinic. Triangula tion with analysts incorporated an independent analysis by one members of the researcher’s doctoral committee. Member-checking of the data provide d credibility, confirmability and transferability to the conclusions drawn fro m this study. Member checking provided the

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50 participants or stake-holders an opportunity to correct errors in assumptions and provides an additional opportunity to volunteer additi onal information. A sub-set of the key informants were asked to ve rify whether the results and conclusions reached by the researcher reflected their own beliefs and e xperiences. These key informants included all ATN site representatives that attended presenta tion of these findings at meetings for Ryan White Title D funded sites in July, 2007 and ATN funded sites in October, 2007. Discussions during the formal question and answer sections of each of the presentations as well as informal conversa tions during these meetings s uggested agreement with the findings and conclusion. Summary Chapter 3 described the study design, bias and perceptions, population and sampling strategy; data collect ion and management and data analysis including ATLAS.ti strategies and operations. Methods used to insu re rigor, credibility, and confirmability were also described.

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51 Chapter Four: Findings Introduction The purpose of this study was to identi fy and describe th e characteristics, structured processes and practice models curre ntly being used in the transition of HIVinfected adolescents from child-centered me dical care to adult-cen tered medical care. This researcher believed that the transition and transfer of adolescents with HIV disease to an adult care setting could be improved if the current processes and practice models used in the Adolescent Trials Network (A TN) clinics were identified, compared and presented in a forum for disc ussion and future intervention development. This chapter presents findings from a secondary data an alysis of 14 in-depth interviews with key informants from each ATN clin ic and a document analysis of written policies, charting, or educational documents related to transiti on activities that were submitted for use in this analysis. The data was originally collected by this researcher for a pilot project in 2007. A preliminary data analysis was performed by the original PSC 060 research team to provide support for a grant application that continues in process. This secondary analysis provides a more thorough analysis using ATLAS.ti, a qualitative data management software program (Muhr, 2004). The findings presented in this chapter ar e discussed in sections that address the relationship of codes to st udy demographic data, the relationship of codes to research questions, and salient themes th at emerged during the analysis.

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52 Relationship of Codes to Study Demographic Data Demographic characteristics that were coll ected in the interviews as well as any other text passage that contained a numerical value were manually coded in the category of ‘demographics’. This code was assigned to 97 text passages. These text passages were transferred to a WORD document using an ATLAS.ti output feature. Related responses were reviewed and fre quency data reported. Fourteen Adolescent Trials Network (ATN) clinics were included in this study. These ATN sites were located in Chicago (2), Boston, Philadelphia, New York (2), Washington D.C., Baltimore, Memphis, Tampa, Ft. Lauderdale, Miami, Los Angeles and San Francisco. One to three sta ff members from each clinic were selected to participate in a single interview per clinic. Nineteen key informants were interviewed between March and December, 2007. Three key informants from the University of Miami clinic were interviewed. The group consisted of a cas e manager, social worker and nurse practitioner. Both St. Jude’s Hospital and Children’s Hospital of Philadelphia designated a social worker and a nurse pract itioner to participate in the interview from their site. The clinic at Washington D.C. Children’s Hospital designated a social worker and a registered nurse to participate in the interview. The clinic at the University of Maryland in Baltimore was represented by a health e ducator who functioned as a youth outreach worker and case manager. Site representativ es included social workers (n=7), nurse practitioners (n=7), physicians (n=3), a regi stered nurse (n=1), and a health educator (n=1). These site representatives were previ ously identified as being the staff involved in their clinics’ transition practice as we ll as those having the most knowledge and experience with the development of their clin ics’ transition practice. All but one of the

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53 ATN sites was represented by staff member s who met this crite rion. That site was represented by a physician who mentioned othe r staff members in th e clinic that were instrumental in planning and implementation of their transition efforts. Two requests were made to speak to those individuals and to obtain copies of their written materials. There was no response to these requests. At the time of this inquir y, the patients in this age gr oup who were currently in care at the fourteen clinics totaled approximately 1,775. The total number of adolescent patients (12 to 25 years of age) cared for at each s ite ranged from 31 to 266. Five clinics managed patients from infancy to age 25 and eight clinics exclus ively managed adolescents from 12 or 13 years to age 25. Two of the clinics ma naged patients of all ages (infancy to adulthood) with different provid ers managing specific age groups. The number of patients transitioned to a dult care per clinic ranged from 4 to16 per year. The interview tool reque sted information about the a nnual number of adolescents who had been transitioned and the annual number of those that had successfully transitioned during the previ ous 12, 24, 36 and 48 months. An swers to these questions could not be accurately or co mpletely provided. The notion that there was no standard definition of a successful transition became appare nt early in the course of the interviews. Only one of the key informants inquired about the definition of a su ccessful transition to guide her data collection. He r interesting response was: That was my question. Because it says su ccessfully started adult care, I took that as an appointment. So in that, which is a very lenient term of success, then in 12 months we had six; in 24 we had nine; 36 was 11; and 48 was 13. But again, that’s using just went to their first a ppointment in adult care. That’s not saying a

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54 lot about the success rate. Another respondent’s initial co mment in the interview addr essed her awareness of her inability to provide an accurate accounting of her clinic’s transition statistics. Some of the information you asked for, in terms of numbers of clients, etcetera. They’re a little bit loose. They’re not spot -on, because sometimes it’s a little bit hard to track, but we did the best that we could….And I guess sometimes defining success versus failure we feel lik e any time they make it to adult, even if it’s been two years, we’ll give them a li ttle bit of credit. There are some areas that are a little bit gray. Respondents did, however, provide an estimated number of transitioned patients and in some cases an estimate of successful transi tions based on feed-back from the adolescents themselves or through informal follow-up by a clinic staff member, usually acting in the role of a case manager. Another interview question addressed whet her or not the clinics had a system to track patients after they were transitioned to the adult clinic. This question provided additional insight into the inab ility to provide accurate number s related to transition. Only three clinics were able to track patients by appointment schedules or laboratory results through an intra-agency computer network. The remaining clinics relied on informal methods of tracking patie nts after they transferred out of the adolescent clinics. These informal methods frequently consisted of f eed-back from the adolescents themselves or through follow-up by a clinic staff member, usua lly acting in the role of a case manager. One of the respondents provided this insight:

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55 That’s the piece that we need to do some work on. That is the piece we hope will happen when [name] can dedicate some ti me to this project. We don’t have any really good tools to track them after they have transitioned. We have a plan. What is probably very common across the country is that these kids have addresses and phone numbers that seem to change some times weekly so they are difficult to access after they stop coming here. One of the interview questions elicited opinions on the preferred age range for an adolescent to transition to adult care. The que stion was posed in a multiple choice format offering choices of 18 to 20 year s, 20 to 22 years, 22 to 24 ye ars, older than 24 years or varies with the individual? The key informan ts from seven clinics opined that transition was best attempted between 22 and 24 year s. There was another group representing six clinics who suggested the preferred age for adolescent transition w ould vary with the individual. One clinic representative stated that she believed th e preferred age for transition to be 20 to 22 years of age. The site representatives were asked to rate the difficulty of transitioning adolescents on a scale of 1 to 5, with 5 being th e most difficult. It wa s interesting that at times the responses on the scale of 1 to 5 seem to contradict some of the imbedded quotations related to the difficul ty of the process. A key informant rated the difficulty of the process as “maybe a two. I don’t think it’s that difficult at all. No, it’s not very difficult. I’d say a two” He went on to say: Well, I do primary care too. And I woul d say probably for my primary care patients without chronic illness, it's pr obably a two. For my primary care patients with HIV or other serious medical and mental health conditions--because I think

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56 the ones that have mental health proble ms become the hardes t all the time--it's probably between a three and a four. Implementation of a struct ured transition process ma y decrease the perceived difficulty of transition as one respondent explained how her clinic’s process had evolved over time. She said, “I think if you had aske d me this question four years ago I would have told you about a 7, but now I would probably say a 2-3”. Relationship of Codes to Research Questions Research question one. How do ATN health care team me mbers view transition? This research question was synthesized from th e following three questions in the interview tool. Are there differences among me mbers of the health care team in terms of how you go about transition planning? If yes, could you describe these to me from your perspective and provide examples? Are there different opinions about how best to transition adolescents to adult care among the team members? If yes, can y ou tell me more about some of these differences? Can you tell me more about how provid ers at your site view transitioning adolescents to adult care? The ATLAS.ti “autocoding” function was applied using the codes differences in transition and view/opinions about transition that attached to 45 and 26 text passages respectively. To determine if any of these pa ssages were coded to more than one of these

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57 codes, the ATLAS.ti function known as “cooccurance” operator was used. There were no text passages co-occurring between these two co des. These 71 text passages were then transferred to a WORD document for review. All of the key informants reported th at staff members had similar views of transition. Phrases such as “we’re all on the same page”, “function as a team”, “collaborative, multidisciplinary approach” were mentioned frequent ly. Several of the informants reported a weekly interdiscip linary team meeting where patient issues, including transition, were discu ssed. The following is an exampl e of these shared views: But, you know, we meet as a collective team each week and talk about not just these cases but all the cases, so we ge nerally are all on the same page in terms of how we want to do these transitions…. I think everyone is pretty much on the same page. I mean, we think it is a ch allenge at times, but I don’t think there are real fundamental differences in opinions. In other cases a key informant would answ er one of the questions with a response that suggested some difference of opinion wi thin the team. Several examples of these discordant opinions were between the medi cal providers and the social workers. An example: I think we are pretty consistent because we are all at the same site…. Differences are how much hand holding. What the doctor expects, what I [social worker] expect. That is what is inconsistent. Our view of how much self-sufficiency should someone be at [ sic ]. There is no one size model. Not everyone is functioning at an adult level. I think there is a unified view that we are not

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58 transitioning appropriately, there is so mething missing, we have to learn how to do this differently or do it better….Case managers think they are holding their hands too much. They feel they are be ing asked to hold their hands when they shouldn’t because it’s not a realistic vi ew of what the young person is going to experience in adult services. So I think the differences may just come down to an individual preference, again, I mention the case managers may have a certain opinion abou t where clients may be more effectively served, and we may ha ve another but I thi nk, all in all, we’re pretty much on the same page, as far as where and how best to get a client linked with an adult program. There was a consensus of opinion that tr ansition to adult care was an important issue that was increasing in urgency as th e perinatally infected adolescents were approaching the age of 24. Six of the fourt een ATN clinics had written guidelines or written procedures that detaile d their transition model. The key informants from these six clinics provided a much more comprehensive and detailed view of transition. This group also described a similar philosophy that incorporated ideas such as beginning the transition process early, indivi dualizing the process, a gradual process, a process using adolescent development theory, and a holisti c approach that inco rporated patients’ psychosocial and medical need s. A Pediatric Nurse Practitioner who was responsible for beginning to develop the clinic’s process more than six years ago de scribed her view of transition: We view it as it needs to be someth ing that goes on from the beginning. I mean,

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59 even as a child--we take care of, you know, three-year-o lds now--even at five and six talking to them about taking their meds and just developmentally-appropriate information and developmentally-appropria te responsibility so that when they reach the teenage years th ey already have some of this, or when they reach adulthood. You know, it’s kind of a gra dual learning. So it should begin early, it should be ongoing education and, like I said, developmentally-appropriate information, developmentally-appropriate responsibility. And then it should be individualized. That is very important. it needs to be something that goes on from the beginning. There was also a spectrum of emotions described when discussing views about transition. Expressions of jo y and satisfaction surrounding tr ansition are contrasted to expressions of sadness and personal loss for bo th the adolescent and the providers. These feelings can be felt in the following passage: The bulk of us think of it as it's almost like a graduation. Like, congratulations, you're an adult now. And you're going to do great. We've hopefully prepared them for managing a chronic illness for th e rest of their life, and navigating the health care system…. I would say ther e's one or two who have, like I said, difficulty letting go. So to them, it's a loss. They feel a loss at losing those patients. So some of the times that gets --the patient picks up on that. So they feel like it's a negative thing… that they ha ve to leave us. Our attitude towards it makes a big difference.

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60 These feelings reflect the strength of the bonds between patient and providers. The emotions of sadness and loss are also consid ered in the discussion of barriers to transition. Research question two What do ATN health care t eam members perceive as facilitators to a successful transition to adult care? This research question was synthesized from the following two questions in the interview tool. Can you think of a specific example of a successful transiti on? If so, why was it successful? Are there things at your site that facili tate the transition proc ess? If yes, what are they? The codes used to identify text related to these concepts and their coding frequencies were success (n=89), assist* (n=7) and facilita* (n=12). There were a total of 108 text passages identified using the “autocode” function. To determine if any of these passages were coded to more than one of these codes, the ATLAS.ti feature known as “cooccurance” operator was used. There was only one text passage that co-occurred, resulting in a total of 107 passages that were coded to identify factors associated with a successful transition. These text passages were then transferred to a WORD document for review. During the initial review of the transcript s, life skill development was frequently discussed as a facilitator and predictor of transition success. A specific code, life skills was assigned during the first ite ration of open coding and 19 text passages were attached to this code fo r later analysis.

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61 Key informants agreed that successful tran sitions were facilitated in a patient who had strong social support, emotional maturity along with the ability and motivation to function independently. Maturity and inde pendence were also mentioned frequently during the discussions of life skill developmen t. The following text passages describe not only the specific skills but also methods for their instruction. We have a support group that meets but t hose are for the kids that come to the group and we do teach life skills, we do have an advocacy group, how to negotiate systems….like the welfare office, how to get your insurance, those kind of things which are really difficult to negotiate as an adolescent or young adult….But for those kids that are transitioning th at don’t come to group, we will work with them individually. Locally there is a lo t of education for consumers. There’s a program in Philadelphia called Proj ect Teach through an AIDS service organization. Project Teach is a class, I think it’s 8 weeks, and they have a curriculum and part of that curriculum is how to navigate the medical system as an HIV+ person. That class is really helpful and we refer kids to that class. We have had kids go through that class wh ich is invaluable training for our kids. What we’ve learned is that we really need to teach them [the adolescents] life skills, responsibility, skills around thei r medical issues… how to advocate for themselves within an adult care system because they are not going to get the coddling and the enabling the way they’v e had here… Children and adolescents are treated differently than adults and when they get to an adult facility, it’s on them. They will not be called every week to remind them to ta ke their meds, not

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62 going to be called for their a ppointments, so there is a lo t that they have to learn and those are the things that we have real ly learned ourselves in terms of what we need to prepare these kids to move to adu lt care. It’s a process and there is a lot of learning that they have to do. Another scenario describing a successf ul transition experience emphasized the importance of starting early, dealing with emotional issues and trust: The process was started early. The patie nt’s reaction to approaching transition (fears, anxieties) was worked th rough. Barriers were addressed and worked through. Based on our years of worki ng with the patient, we have built a relationship of trust so that they believe we are work ing for their best interests. Another passage highlights the importance of collaboration with patient to make the first visit to the adult c linic a comfortable, well-planne d visit. The importance of the adolescent’s support system, readiness to tr ansition, as well as communication between the adolescent and adult providers are also disc ussed as facilitators in this passage. This scenario also describes several of the sta ff interventions that were used during the transition process. And this person that was her support system at that time--the three of us just went and visited the site. And I think that th at whole collaborative kind of approach to transitioning… and, of course, I spoke w ith the agency on the other end, and they were expecting her so, when we got there, it was a positive experience. It was a

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63 welcoming experience. And it was more than just, “Here, here’s a referral. Here’s some place that you can go. And I think that that might’ve helped to make it successful. But I also think that, again, that trusting relations hip and the growth, the individual growth, that the person experienced, I think along with us working with her, helped to get her to a place where she was ready. The following account of a transition expe rience is particularly poignant to this researcher because this young lady is now one of my patients. This account again reinforces the importance of in cluding the adolescent in the planning process, listening to his or her concerns and individualizing the experience for each patient. References were made in several of th e interviews to the reassurance gi ven to the adolescent that the pediatric team will continue as a re source until transition is completed. She was one of the first that would have been tran sitioned from this program. Ultimately we iden tified with her what would be he lpful to her. She wanted to have somebody go with her to visit, so we did that. I thi nk why it was successful was because we listened to her and didn’t just say, “You’re an adult, you can go on and do this, you’re going to be fine.” We listened to her fears and her concerns and said, “Just because this is a good th ing that you’re movi ng on, look at what’s happened for you. Did you think you’d be doing this?” And just because we weren’t going to be her doctor, that we were here as a resource until she was comfortable in her new setting. Research question three. What do ATN health care team members perceive as barriers to a successful transition to adult care?

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64 This research question was synthesized from th e following three questions in the interview tool. Can you think of a specific example of a failed transition? If so, why was it a failure? Are there things at your site that ge t in the way of the transition process? If yes, what are they? Have any failures occurred which made your site reluctant to transition your patients? If so, can you tell me about that failure? Thirteen codes were used to identify text related to these concepts that are listed in 8. To determine if any of these passages were coded to more than one of these codes, the ATLAS.ti feature known as “cooccurance” operator was used. There were 28 text passages identified as co-occurring that result ed in a total of 177 passages associated with barriers to a successful transition. These text passages were then transferred to a WORD document for review.

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65 Table 8 List of Codes for Barriers to a Successful Transition (n=num ber of coded text passages) Barrier* (n=15) Insurance (n=27) Adherence/nonadherence (n=6) Me dically complex (n=17) HIV/AIDS adult clinic (n=51) Me ntal health problems (n=7) Cognitive Delay (n=16) Long-standing relationship (n=5) Drug use (n=11) Stigma (n=5) Failed transition (n=21) Tracking (n=16) In the way (n=22) Note. is an ATLAS.ti programming symbol for a wild card or alternate endings to the root word that proceeds the *. (n=X) repres ents the number of te xt passages assigned to each code. The following passage describes the diff iculty changing and terminating a longstanding relationship. Like yesterday, we had such a rich di scussion about one of our patients of how I held him back because I’ve had him si nce he was fourteen, and I keep treating him; it’s very hard to change. It’s the provider…my emphasis is really not on [sic] young people are going to grow up. It’s the responsibility of providers to really change their behavior in relationship to their patients. And there’s a big difference between a pediatric and adol escent and an adult model. Site representatives reporte d the adolescents’ perceptions and fears of the adult clinics as important barriers to HCT. Thes e clinics are known in many communities as the ‘AIDS’ clinic. Adolescents cited the lack of confidentiality w ith a fear of being

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66 recognized as ‘positive’. The following passages describe multiple barriers to transition that are associated with many adult clinics. These passages were coded to the supercodes of PRIVACY and EMOTION. The supercode PRIVACY comb ined the individual codes of priva*, HIPAA, confiden tial*, anonym*, disclosure, and find out. The supercode EMOTION combined the individual c odes of emotion*, abandon*, disenfranch*, marginal*, letting go, let go, holding on, hold on, fear, stigma, anger, and shame. The supercodes of PRIVACY and EMOTION identif ied 48 and 18 text passages respectively. Several of the most descriptive passages follow: Fear: One of the scariest things for the kids is that the adult cl inics sound scary .The adult patients look so sick and that…you know, [that is] what they're going to look [like] some day. And they're afraid of that. Disclosure: Some of them won’t go to th e program for people that’s [ sic ] identified as being an HIV-positive clinic, even though it’s no t called that, everybody knows what it is. They just refuse. Lack of privacy: She got really turned off, because it’s a very different system, a different clinic. It’s overcrowded, it’s not pretty, there’s no privacy. It’s the complete opposite of our clinic. You know, our clin ic is in a pediatric facili ty and it’s very friendly--or relatively friendly. We have front office st aff that respect confid entiality. So all of those things put together…

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67 Stigma: Unfortunately, that is true with the adu lt clinic here on campus. They just stand out as a person with HIV. You wouldn’t be sitting in that lobby or you wouldn’t go down that halfway, corridor D, that says “Special Immuno logy,” if you didn’t have HIV. Negotiating the Adult World: We can do everything right and then we’ ll send a patient to the adult clinic and it’s a different system. A client could maybe--their Medicaid card has expired, or they were ten minutes late and the front office person is not helpful, and then they get frustrated, and all of a sudden the patient just says, “Forget it,” and they leave. We could do everything right and sti ll have a transition failure based on something that had absolutely nothing to do with our transition process. Differences in Adolescent and Adult Care Models: Adult services are just so different, you ’re lucky to have a 10 minute appointment. I just don’t think they have the resources to provide the same level of care. We serve about 100 clients and some of them have 1000’s coming through. When we talk to them about how to a ssert themselves with doctor….Maybe you can write down some of your questions because the doctor is going to probably come in and going to probably have ten or fifteen minutes with you. So he’s going to have an agenda. He’s going to come i n, he’s going to rush, and that, if you’re really not prepared for that, he might come across as somewhat intimidating.

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68 There is evidence to support that transiti on of these adolescent s from adolescent care into adult care can be very problematic. The problems are intensified when multiple barriers and obstacles are occurring simulta neously. Several scenarios of a failed transition are examples of these co mplex issues. One example follows: She is also on our Community Advisory Board (CAB), in care with us since she was 2, in Peds clinic, transitioned to our clinic. In the process, she’s had 2 children both negative, and she’s also adopted 2 family members. She’s just an amazing woman. Not truly literate just keeping her family together. Strong skills [sic] life skills are great. Anyone that can raise 4 children [ sic ] she’s 25. Thinking of where she she lives, thinking about her children’s care, all her kids are seen at our hospital. We found a clin ic a block from us that specializes in women’s care, has a good reputation, star ted the conversation early. Whatever, it never happened. Her meds ran out and she still hadn’t seen a physician, Dr. [name] had to refill her meds. Failure to communicate on our part and the adult clinic [ sic ]. We use an information database in HIV care services funded through local health dept. In concept it’s grea t, people sign one consent, and it is good for all Ryan White clinics. The whole idea is that people can go from clinic to clinic. We didn’t have any type of paper system do we contact them, what do we expect her to do? What do we give her, what will she need to be successful. What will she really need to get through the regi stration processes? Un fortunately we had not given her what she needed. She was not very vocal about it, and she got very frustrated with the process. Like ma ny women she deferred her own care and focused on her kids. She never followed through Four months later, at a CAB she

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69 still hadn’t been seen [by a provider]. I don’t have a doctor stil l and they haven’t called me back. I needed this form from such and some case manager and I never got it. I really would have appreciated someone going w ith me to my first appt. Research question four. What are the similarities and differences among the clinics that have a structured transi tion program and those that do not? A comprehensive review of the data to discuss this research question could not be accomplished from a simple ATLAS.ti query. Th e first step included a manual review of each transcript and manually a ssigning codes to relevant text passages that addressed this research question. The two codes used were criteria for transition and differences in transition These codes were assigned to 41 and 45 text passages respectively. The next step was a manual review of the transcripts from clinics with and without a structured transition program to identify patterns of similarities and di fferences. Any new pattern that was recognized during this ma nual review was recorded using the ATLAS.ti “memo” function and later reviewed. Six of the 14 clinics had written policies and procedures that a ddressed such things as the age at which transition is initiated, the ages at which to certain behaviors are expected and accomplished; and staff assignments for tr ansition objectives, responsibilities and activities. The staff me mbers involved in transition often included a care manager, social worker, health care provi der, and a youth advocate or peer partner. Five of these clinics with written policies and procedures credited nurse practitioners, social workers or a combination of the two as either the formal of informal transition team leaders.

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70 Two clinics reported using a written test of HIV selfcare knowledge that includes disease specific information, transmission and secondary prevention information and treatment information. Both of these clinics included a pl an for a follow-up phone call at three months following th e transfer of care. Three clinics reported using documentation and charting tools that were specific to transition. These documents included a checklist of knowledge and skills for management of HIV and a transition specific pl an of care. The topics addressed in the knowledge/skills checklist and plan of care ar e listed in Table 9. Two clinics described the use of a Transition Workbook develope d by the Adolescent HIV/AIDS Workgroup from the National AIDS Education and Tr aining Center (AETC, 2006). This workbook uses a developmental approach to teach a nd reinforce various life-skills and health information. Table 9 Knowledge/Skills Checklist and Plan for Transition to Adult Care Topics Knowledge and Skills Required for Self-care Knowledge of health condition Medication management Preventive health behaviors Knowledge and Skills Required for Self-care Responsible sexual activ ity and family planning Community resources Education vocation and career plans Family support Housing or goals for independent living Transportation Funding sources

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71 The key informants from the clinics with the most comprehensive transition plans clearly articulated the need to use a deve lopmental approach in planning transition. Examples of this developmental approach with the intent to teach and reinforce life skill are highlighted in the following passages: We view it as it needs to be some thing that goes on fro m the beginning….You know, it’s kind of a gradual learning. So it should begin early, it should be ongoing education and, like I said, developmentally-appropriate information, developmentally-appropriate responsibility. And then it should be individualized. That is very important. The other conflict that we found is that if you do not understand adolescence as a developmental process itself then your expectations of each individual are beyond their capability. So what we have found out from the original chart review is that they actually are adolescents and did not have the life skills to follow-up after they were discharged. I mean it looked like we had tr ansitioned them, but the fact is they did not have the skills to successfully stay in care. We have a support group that meets but t hose are for the kids that come to the group and we do teach life skills, we do have an advocacy group, how to negotiate systems….like the welfare office, how to ge t your insurance, those kinds of things which are really difficult to negotiate as an adolescent or young adult.

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72 The most striking differen ce between the clinics with and without a structured transition process is the fundamental approach to transition as a process rather than an event. This difference in approach explai ns that those clinics with a process of assessment, planning, intervention, and education as a preparation for transfer to an adult care setting. The profound di fference in these two approaches is evident in the following passages. When queried about the length of th eir clinics transition process, the following replies were provided by the ke y informants from clinics wi thout a transition process in place: “Once we’ve identified th at we are going to transition the patient, it’ll be done at their next visit” or “We begin discussing transition at their 24th birthday”, or “six to seven months”. The responses from the clinic repr esentatives who had a transition process in place revealed a very different perspective: “With our old process it could be a year or more but with our new plan it can vary from 6 months to 2 years”, “t he process starts the day they come into our clinic”, and “we st art at age 16 and discuss at every visit”. Numerous scenarios described transition as a process. They illustrate that lessons are learned over time and that the process of transition is an iterative one that needs frequent evaluation and revision. An example: So I think all of our providers think it’s [transition planning] in credibly important, and we really have worked hard to create this protocol, fine-tune it. We’re constantly revising it, so I would say that for all of the provide rs, it’s one of our biggest priorities. Research question five. What strategies have ATN syst ems of care developed to assist patients in making a successful tr ansition to adu lt medical care? This research question was synthesized fro m the following four questions in the

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73 interview tool. Are there specific criteria th at your team uses when thinking about transitioning a patient to adult care? Are there any tests performed that fi gure in the decision about whether to transition an adolescent to adult care? Is there any documentation that is part of the transition process at your site? Are there things at your site that facilitate the transition process? If yes, would you describe? The codes used to identify text related to strategies used in ATN systems of care and are criteria for transition (n = 41), facilitators (n=12), assi st* (n=7), success* (n=89), life skills (n=19) and developmental (n=14). To determine if any of these passages were coded to more than one of these codes, the ATLAS.ti function known as “cooccurance” operator was used. There were 8 text passages identified as co-occurring which resulted in a total of 174 passages coded to factors associ ated with barriers to a successful transition. These text passages were then transfe rred to a WORD document for review. Representatives from several sites desc ribed practice models that serve to gradually orient the adolescent to his or he r future adult provid er and adult clinic environment. Several of the sites arrange tours of the potential adult clinics. The adolescents are accompanied on these visits, as well as first appointments, by either case managers or peer educators as well as a me mber of his or her fa mily or support group. Several of the site representatives commented on the benefits of cas e management for the adolescent entering adult care. They described benefits of continuing contact between the

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74 adolescent and his or her adolescent case mana ger during the first year following transfer to the adult clinic. Two sites employ an adult nurse prac titioner to manage the care of the transitioning patients during the la st year or two prior to transf er to the adult clinic. This adult provider would then beco me the adolescent’s provider following the transfer to the adult clinic. One site uses a psychiatrist that sees patients at both the adolescent and adult sites. One nurse practitioner that practices at both the adolescent and adult clinics describes her responsibilities in the following text passage: And everyone agrees, at least intellectua lly, that transitioni ng patients to me when they're twenty-four [is a good idea]….that they have a year to get used to me while still in the same c linic environment. And part of my job in that year is to teach them adult behaviors ar ound making appointments and keeping appointments and coming on time and how to talk to a pharmacy about your prescriptions, and stuff like that. Representatives from one clinic described a celebration that is enjoyed by patients, their families as well as the health care team. The other thing that we do is we have a graduation ceremony so, like, in May they wear a little cap and gown, and we get th em a plant, and we have a big ceremony for the people who are graduating, which is really nice for people because it gives them a sense of accomplishment and closure.

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75 Salient Themes Two themes emerged from the data that did not directly relate with any of the research questions. One of the emergent th emes involved differences in the transition experience for various subpopulations of adoles cents with HIV disease. This inquiry was framed around the following interview questi on: Have you noticed any differences in how your team transitions pa tients based on variable X? The variables of interest included age, developmental delays, cogn itive limitations, medi cal complexity, and membership in a sexual or ge nder minority group, or pregna nt. Respondents from 13 of the 14 sites reported that more attention and time devoted to skill development would be provided to those adolescents with develo pmental or cognitive delays. Informants representing 12 of the 14 sites described a difference in planning and more extensive communication between the adolescent provider and adult provider if the patient was considered medically complex. Six of the informants specifically mentioned that transition would be delayed dur ing a medical or so cial crisis and not attempted if the adolescent’s prognosis was poor. However, it was noted by informants fro m seven sites that pregnant adolescents seemed to experience an easier transition to a dult care. This informat ion is of interest because some of the explanations may be in structive in planning transition interventions for other adolescent groups. Pregnant adolescen ts were frequently reported to be referred to other providers during their pregnancy. They were often refe rred to adult OB/GYN providers and could opt to stay in the adult clin ic or return to the a dolescent clinic after the birth. Several site representatives expre ssed the belief that women appeared to have

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76 an easier transition to adult care if they had experience with a different provider during pregnancy. The following passage describes such an experience: The obstetrician, who had taken care of her during her pregnancy, also works as a primary care provider in the adult clin ic. And she wanted to go to him; she already knew him. And she is in car e on antiretroviral therapy with an undetectable viral load and she’s twenty-five. It was also noted that females with ch ildren received Medicaid benefits and other entitlements that would not only increase the number of available adult providers but might also assist in other expenses necessa ry to stay in care, such as money for transportation, co-pays, and stable housing. Another set of issues that was frequent ly mentioned surrounded hospitalizations and emergency visits to hospitals for a dolescents and young adults with HIV/AIDS ranging in age from 15 to 25 years. The fundament al issues relate to age restrictions at specific health care locations and scope of practice for pediatric, adolescent and adult providers. The medical settings most often mentioned as problemat ic were children’s hospitals and emergency departments. Probl ems occur when there are hospital policies related to age restrictions for admission to specific units, scope of professional practice and reimbursement issues. From a patient persp ective, if admitted to a children’s hospital, he or she begins to become uncomfortable in the child-centered environment. Other problematic situations were reported that involved either a recently transitioned adolescent or an adolescent who was transitioned in the past but is now lost to follow-up. In both of these situations, it is common for the young person to provide the name of their previous pediatric or adolescen t provider as their contact. Another reported concern was

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77 an inconsistency of policies related to a dolescents with congenital illnesses when compared to adolescents with HIV disease. The following passages describe several of these dilemmas: Children’s Hospital Emergency Room: B ecause they start rea lizing that they're the oldest person…that when they go to the emergency room, they're the oldest person there who is not a parent. And they also start getting rejected at various specialty clinics. Responsibilities during a hospital admission : I am a pediatric nurse practitioner, Dr. [name’s] a pediatrician, so it’s no t only difficult in terms of what we are licensed to do in our clinic, but it al so becomes an issue when you have to hospitalize a patient and you can no longer put them on the pedi atric floor. Then you have to turn their care over to th e adult providers, which becomes very difficult to manage. Aging out of pediatric services: …as they get too old for certain Children's Hospital services, and the first one of those where it happens is mental health. Our Psychiatry Department at Children's Hospital will not accept referrals of anyone over the age of 18 because of some kind of reimbursement issues. Child-centered Culture: It’s a major probl em because largely they are uninsured. And it is also a problem because a lot of them are like gay or transgender youth that, for whatever reason, and I’m not making a judgment about this, they don’t fit the culture of sort of a pediatric in-patient hospital facility. Inconsistency: There isn't a firm age cuto ff that's consistent across the hospital. And the kid who is told when she's ad mitted for PCP at 24, that she can't get

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78 admitted here anymore, she's too old, by the resident who admits her, when she's in a bed next to a 40-year-old with cys tic fibrosis, it feels to them inconsistent. Post-transition responsibilit ies:…and many of them don’t ca ll us to say, hey, that guy you transitioned to us last year [ sic] he stopped coming. We don’t realize it. And when they pop up in someone’s emergency room, often times, we are the name that they give. Who can provide optimal care for a 24 year old with HIV? We can’t admit them. They get admitted to adu lt….[after the age of] twenty-one. So the medically complicated, I think, are the most co mplicated because you feel such a [dilemma]…are you abandoning your patie nt? It’s an ethical conflict. And sometimes you just have to get past it and just do it. Chapter Summary This chapter presented the findings that were obtained in this qualitative analysis. The actual findings were presented through di scussions of the relationship of codes to study demographic data, relationship of codes to research questions, and salient themes that emerged during the analysis. It was inst ructive to present demographic information that described the population of patients, th e composition of care team members and frequency data related to pa tients in transition from each clinic. The significance and implications will be discussed in Chapter Five.

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79 Chapter Five: Discussion Introduction The purpose of this final chapter is to provide a summary of the study and a discussion of the research find ings presented in the previous chapter. A discussion of the strengths and limitations of the study, plan s for dissemination, implications for nursing practice and recommendati ons for future studies are also presented. Summary of the Study The purpose of this secondary data analys is was to describe the characteristics, processes and practice models used by the Adolescent Trials Network (ATN) systems of care to assist adolescents with HIV disease to transition from child-centered care to adultcentered care. This secondary analysis, with the assistance of th e tools available in ATLAS.ti, offers an analysis of the data th rough a variety of comput er assisted lenses. The population of interest was adolescents with HIV disease who are or soon will be transitioning from child-cen tered medical care to adult-cen tered care. This study used health care providers affiliated with the Adolescent Trials Ne twork of HIV/AIDS Interventions (ATN) as key informants who we re most familiar with the phenomenon of transition in this population. One to three representatives from each site considered to be the most knowledgeable staff member(s) involved with thei r clinic’s transition were interviewed. Nineteen representatives from 14 AT N sites participated in the study. These designated key informants were invited to sh are their personal and collective views of the phenomenon of transition and to describe anything that was considered a barrier or

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80 facilitator to the process. Th e data set consisted of 14 audi o-taped interviews as well as clinic documents that were submitted for review. An a priori coding framework was prepared prior to the initial preliminary an alysis based on the study research questions and the interview questions. This initial codi ng framework was refined using the constant comparative method and subsequent coding disc repancies in the remaining analysis were resolved by consensus. Transcripts and clin ic documents were analyzed using content analysis within an ATLAS. ti data management system. This research provided valuable info rmation related to the phenomenon of transition together with anec dotal information about the ad olescents with HIV disease that are currently experiencing or have recentl y experienced this transition to adult care. Current policies and practices of the ATN clin ic health care teams were discussed as well as factors that were perceived as barriers a nd facilitators to the transition process. The study is unique in that no known investigat ions have previously described transition practices across a geographically diverse gr oup of clinics in the United States. The significance of this study relate s to the fact that this is the first report to describe transition practices from the ATN network clin ics whose care teams manage the largest cohort of adolescents with HIV disease in the United States. Implicati ons of these finding and suggestions for future study were explored. Discussion of the Findings Relationship of codes to study demographic data. At the time of this inquiry, patients between the ages of 12 and 25 year s enrolled in care at the 14 ATN clinics totaled approximately 1,775. The numbers of adolescents within this age group ranged from 31 to 266 across the fourteen sites. The annual number of adol escents transitioned

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81 during the last 1248 months ranged from 4 to16 per site. While inquiring about the number of adolescents who had transitioned pe r year and the number of those transitions that were considered successful, an im portant finding emerged. The numbers of adolescents who had been successfully transitione d to adult care could not consistently be determined because there was no standard definition of a succe ssful transition and because there was no mechanism in place to track patients from one site to another. Ultimately the measure of success fo r any transition program would require specific outcomes by which “success” could be measured. The meas ures might include behavioral outcomes such as showing up for the initial appointment attending a specific number of appointments in one year or adherence to antire troviral therap y. Measures might also include clinical outcomes such as an undetectable HIV viral load. Blum et al. (1993) acknowledged the need for and lack of controlled st udies of transition models and the lack of criteria to evalua te success. They propose that the success of adolescents with chronic diseases transitioni ng into adulthood must include a variety of measures such as disease-sp ecific measures, functional stat us and sense of well-being. Furthermore, even with a standard definition and defined outcomes, there are obstacles to measurement that include the lack of fo rmal tracking mechan isms to follow the adolescents after they leave the adolescen t care setting. Other considerations are the restrictions created by the Health Insura nce Portability and Accountability Act of 1996 (HIPAA). Research question one: How do ATN health care team members view transition? All of the key informants agr eed that staff members shared similar views of transition. When describing these similar views, wo rds such as teamwork, collaborative and

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82 multidisciplinary were frequently used. Thes e cooperative approaches addressed aspects of transition models that ha ve been described by various agencies and professional organizations (MCHB, 1 989; Blum et al., 1993, Blum 2005; Rosen et al., 2003). Collaboration among a multidisciplinary team would offer a holistic approach to the adolescent’s chronic physical developmental, behavioral or emotional needs. The key informants from the six clinics that incorporated a structured transition process provided a much more comprehensiv e and detailed view of transition. Their views together with propositions previously noted in the literature can be considered the foundations for development of a structured tr ansition program. Blum et al. (1993) in the original position paper from the Society of Adolescent Medicine encouraged a gradual approach to purposeful, planne d movement toward independe nce. Rosen et al. (2003) posited that a successful transi tion experience would promote an adolescent’s sense of autonomy, personal responsibilit y and self-reliance. One outco me criterion in the Healthy People 2010 program for children with special health care needs addresses the ability of the child or adolescent to take charge of his or her own health care (CDC, 2000). Descriptors such as family-centered, continuous, comprehensive, coordinated, compassionate, culturally competent, a nd developmentally appropriate are now consistently seen throughout the HCT litera ture. Proposed foundations for a structured transition program are listed in Table 10.

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83 Table 10 Foundations for a Structured Transition Program Application of adolescent developmental theory Consideration of developmental age together with chronological age Early initiation of transiti on planning (ages 14 to 16) or when admitted to adolescent care clinic Gradual transition process Individualization of the transition plan Use of a holistic approach to medical and psychosocial needs Planned learning activities during transition to enhan ce the adolescent's sense of autonomy, personal respons ibility and independence. Care provided by culturally competent staff Key informants from the 11 of the 14 ATN clinics described a spectrum of emotions when discussing view s about transition. Expressions of joy and satisfaction surrounding transition are contra sted to expressions of sadness and personal loss for both the adolescent and the providers. These feeli ngs reflect the strengt h of the bonds between patient and providers. These emotions of sadness and loss are considered in the discussion of barrie rs to transition. Research question two: What do ATN hea lth care team members perceive as facilitators to a successful transition to adult care? Characteristics iden tified as possible facilitators to a successful tr ansition were extracted from anec dotal reports of successful transitions. These characteristics can be distinctly categorized as intrinsic or extrinsic to the adolescent. These intrinsic characteristic s included emotional ma turity along with the ability and motivation to functi on independently. External factor s perceived to facilitate a successful transition included a strong soci al support system, uninterrupted health insurance benefits, available transportation system and stable housing. Key informants were asked several questions about their prefer red adult referral sites. As these questions

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84 were answered, a picture of th e ideal adult clinic began to emerge. Characteristics of the ideal adult clinic that were commonly reporte d as desirable and perceived to facilitate successful transition are listed in Table 11. Table 11 Characteristics of Adult Clinics A ssociated with Successful Transition A single contact person assists the adolescent in transition The new provider is introduced to the a dolescent at the start of the transition process Comprehensive services are provided including primary care, pharmacy, and dental services Psychosocial services such as case ma nagement, mental health, and support groups, are provided. Flexibility is provided as the adolescent adjusts to the adult clinic environment The staff is culturally competent and lesbian, gay, bisexual and transgender (LGBT) friendly Follow-up is facilitated by the case manager from the pe diatric clinic Adult providers deliver age and deve lopmentally appropriate care for the adolescent Communication between provide rs from the adolescent a nd adult sites is shared and timely The characteristics of preferred clinic referral sites mirror the suggestions for transition programs previously identified in th e literature. A single professional acting as a coordinator and advocate who would take re sponsibility for the transition process was

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85 included as a necessary component of a tran sition program. This designated professional would work in partnership with the patient a nd the family to facili tate and streamline the transition experience. This idea of a designa ted professional respons ible for coordinating HCT was also included in the consensus st atement from the Am erican Academy of Pediatrics, the American Acad emy of Family Physicians an d the American College of Physicians-American Society of Internal Medi cine (2002). These organizations identified the first “critical step” in HCT is ensuring that all ASHCN have an identified health care professional who “assumes responsibility for current health care, care coordination, and future health care planning” (p. 1385). Research question three: What do ATN health care team members perceive as barriers to a successful transition to adult care? Representatives from 10 of the 14 ATN sites reported that adolescents frequently sh are perceptions of th e adult clinics that created barriers to HCT. These clinics were known in many commun ities as the ‘AIDS’ clinic and adolescents cited the lack of confid entiality with a fear of being recognized as ‘positive’. Negative emotions such as fear, shame and a nger were often mentioned as characterizing adolescents who were unsuccessf ul in transition. Shame was discussed in relation to the stigma of HI V disease that can result in marginalization and social isolation. These barriers have b een considered somewhat uni que to HIV disease and have been previously predicted in the litera ture (AIDS Education and Training National Resource Center, 2006; Brown, Laurie, & Pao, 2000; HIV/ AIDS Bureau, 1999). Reports from interviews with adolescents with HIV disease corroborate these perceptions (Miles and Clapton, 2004; Fielden, et al. 2006; Weiner et al., 2007; Vazauez, 2006; Vijayan, et al., 2008).

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86 Representatives from nine of the 14 site s representatives included drug abuse and mental health issues when asked to identif y barriers to transition. Examples of failed transitions similarly containe d frequent reference to ‘cryst al meth’, ‘crack cocaine’, heroin as well as untreated depression and bipol ar disorder. Difficulti es associated with adolescents participating in treatment fo r drug abuse and mental illness were also described. Similar difficulties have been reported in the literature both for the general population of adolescents with chronic illne sses as well as the more specific population of adolescents with HIV disease (Blum, 1995; Reiss et al., 2005; Brown et al., 2000). Nasr (1992) and Geenen et al. (2003) reporte d that pediatricians expressed discomfort when discussing sex, drugs and alcohol with adolescent patients. This body of knowledge would suggest that staff specializing in prev ention as well as treatment of substance use and mental health issues would be a bene ficial component of transition programs. The spectrum of emotions experienced by adolescent providers and patient at the ATN clinics included expressions of sadness and personal loss when terminating their long-standing therapeutic relationships. Th ese emotions often re sulted in delay of transition and difficulty term inating the relationship. Key informants reported that adolescents who had been transferred to a dult care would often return and ask for assistance. There was varia tion in the clinics’ respons es to adolescent requests. Difficulties associated with terminating long-standing provid er-patient relationships are commonly reported in the literature (Hous er & Dorn, 1999; Schidlow & Fiel, 1990; Sinnema, Bonarilus, Laag, & Stoop, 1988). The problems frequently referred to in the

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87 literature as “letting go” wa s described from both the pediatric provider and the patientfamily perspective. Lastly, there were the references to vari ous funding issues that have interfered with a successful transition. Th ey are summarized in Table 12. Table 12 Access and Funding Barriers to Successful Transition Lapses in health insurance at ages 18 and 21* Lack of access to affordable transportation Lack of affordable and safe housing* Inability to fund out-of-p ocket medical expenses Lack of adult HIV specialist providers* No confidence in the home community physicians* Shortage of HIV social workers and case managers* Need for a pharmacy in home community* Note = Barriers also included in Weiner et al. (2007) study. Research question four: What are th e similarities and differences among the clinics that have a structured tr ansition program and those that do not? Six of the 14 clinics had structured transition programs. Four of these clinics submitted written documents (policies, procedures, guidelines, patient information, a nd templates for chart documentation) for review and use in this study. Items addressed in these documents included the age when transition planning and pa tient education are initiated; ages when certain behaviors are expected and accomplis hed; and staff assign ments for transition

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88 objectives, responsibilities and activities. Checkli sts were used to asse ss certain skills and behaviors thought to be essen tial to independent functioni ng with a chronic disease. Deliberate attention was given to knowle dge and management of HIV, wellness behaviors, responsible sexual activity, and he alth insurance and community resources. Only one key informant used the term “preven tion for positives” that is the name of the CDC initiative aimed to reduce the risk of HIV transmission from individuals infected with the virus (CDC, 2003). The key informants from the clinics with the most comprehensive transition plans consistently articulated the need to use a developmental approach to plan an indivi dualized transition experience. The staff members involved in transition of ten included a care manager, social worker, health care provider, and a youth advocate or peer partner. Five of these clinics with written policies and procedures credited nu rse practitioners, social worker s or a combination of the two as either the formal of info rmal transition team leaders. These clinics that acknowledged a transition team leader appear to be moving toward the recomme ndation that a single health care professional assume responsibility for current h ealth care, care coordination, and future health care planning during the transi tion to adult care (Blum, et al., 2002; Rosen et al., 2003). A significant difference identified betw een the clinics with and without a structured transition process wa s a fundamental diff erence in approach to transition as a process rather than an event. The clinics that used a structured tr ansition program viewed transition as a process that occurs over time. The clinics that were not using a structured program often spoke about tran sition as an event or th e actual transfer of care. After identifying this differe nce, a literature search pr ovided a better understanding of the use of these terms in prac tice. Transition is an anticipat ed, coordinated process where

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89 transfer is an event: the movement to a new health care settin g, provider, or both (Callahan, et al., 2001). “First, th e transition should be a proce ss, not an event, and should involve the entire family as a s upport system. It would also be gin early, even as early as diagnosis, ensuring that by young adulthood, yo uth are fully prepared to assume more responsibility for their lives.” (Blum, Wh ite, & Gallay, 2005, p1). Numerous scenarios illustrated this difference in approach that was distinguished those clinics that used a structured approach to tran sition and those that did not. Representatives from both types of clinics recognize a continued need to im prove practice related to transition. It is instructive to note that this recogniti on comes from anecdotal issues surrounding individual patients’ experiences and not actual measures of transition outcomes. Research question five: What strategies have ATN system s of care developed to assist patients in making a successful transition to adult medical care? The six ATN clinics that have developed a structured transition program included a mechanism that provided introductions or gradua l exposure of the adolescent to their prospective adult provider. These six sites also include a t our of the potential adult clinics during the transition process. The adolescents were acco mpanied on these visits, as well as first appointments, by either case managers or peer educators as well as a member of his or her family or support group. These program com ponents were described as key elements in a program that would assist in a smoothe r transition to adulthood (Blum, et al., 2005). Representatives from four site s commented on the benefits of continuing contact between the adolescent and his or her adolescent cas e manager during the first year following transfer to the adult clinic.

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90 Two sites employed an adult nurse pr actitioner to manage the care of the transitioning patients during the la st year or two prior to transf er to the adult clinic. This adult provider would continue as the adolescent’s provider following the transfer to the adult clinic. One site employs a psychiatrist th at manages patients at both the adolescent and adult sites. Miles and Clap ton (2004) reported that six of the seven adolescents with HIV disease who were previously transferred to an adult clinic later reported a perceived benefit from being introduced a nd working with the adult prov ider prior to transfer. The adult clinic that participat ed in this transition prog ram in the United Kingdom had established a specialist adolescent transition clin ic that offered care with an adult provider during the period during and af ter transition. Wagner et al. (2008) described a transition program that assigned each patient to a pe diatric Nurse Practitioner who assessed the adolescent’s readiness to transition, an introduc tion of the adolescent to the adult provider prior to the first appointment, a single adult provider that accepted the adolescent into adult care, a social worker who was shared by the pediatric and adult clinic and a multidisciplinary team including clinic nur ses and home nurses who provided outreach and support for missed appointments and medi cation non-adherence. Evaluation of this program is ongoing. Salient themes. Two salient themes were identified during the analysis that were not directly related to any of the research questions. A series of questions were used to determine if there were differences in the approach or experience of transition based on age, developmental delays, cognitive limitati ons, medical complexity and membership in a sexual or gender minority group, or pregnanc y. ATN clinic policy allows patients to remain in care until their 25th birthday. Efforts to initiate transition and tr ansfer did not

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91 occur unless requested by the adolescent at an earlier age. There was no discussion surrounding the choice of this pa rticular age for transfer to adult care. The literature suggests that developmental age be considered along with chronological age when planning transition (Blum, et al., 2002; Rosen et al., 2003) Representatives from 13 of the 14 sites acknowledged special considerat ion during transition fo r those adolescents with cognitive or developmental delays yet onl y one site reported using any psychometric tools to assess the adolescents’ cognitive func tion or readiness to transition. Another entire domain within the transition literature focuses on readiness to transition and the development of psychometric instruments to measure and evaluate this construct. Research efforts in the domai n of transition for adolescents with HIV disease would be enhanced if readiness to transition were include d as a variable of interest. No differences in any aspect of transition were noted for gay, lesbian, tr ansgendered or other minority groups of adolescents other than attempting to identify adult referr al sites that were culturally competent and “friendly” to these groups of adolescents. Another interesting perception described by key informants from seven of the sites related to pregnant a dolescent females experiencing a smoother and more successful transition to adult care. The rationale cited for this perceived diff erence was the exposure during pregnancy to different a medical provider in a differen t setting prior to the actual transfer of care to an adult HIV provider. Th is observation may have also been related to the additional support that is provided to all pregnant adol escents through programs such as WIC and Medicaid which provided additiona l exposure to differ ent individuals and different agencies. This additional support might also provide intangibl es that assist with expenses necessary to stay in care, such as money for transportation, co-pays, and stable

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92 housing. The transition experiences of these a dolescent females offer several models that may instructive for futu re investigation. The second salient theme that was iden tified addressed various issues surrounding age-related professional competencies, hosp ital policies and reim bursement concerns. The fundamental issues relate to age restri ctions at specific hea lth care locations and scope of practice for pediatric, adolescent and adult providers. Problems can occur when hospital policies regulate age restrictions for admission to specific units, scope of professional practice and reimbursement issu es. Key informants described scenarios involving personal experiences with these probl ems. Particularly problematic were the emergency medical situations following discharge from the a dolescent clinic. Many times an adolescent has not established care with an adult provider and when admitted through the emergency department will provide the name of the previous adolescent provider. That pediatric or adolescent provider is unable to manage a patient admitted to an adult unit and patient care is compro mised. Alternatively, adults cared for by pediatricians exceed legal scope of practice and raise lia bility concerns. These issues cannot be resolved through transition research but certa inly warrant discussions of institutional policy and professional practice standards. Strengths and Limitations of the Study The strengths of this stud y include a high voluntary pa rticipation rate from this purposeful sample of clinics as well as representatives from several professional disciplines. The clinics were geographically diverse and the provided comprehensive care to adolescents from all subpopulations livi ng with HIV. The ATN clinics’ Principal Investigator, location, academic affiliation are listed in Appendix A. As previously

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93 noted, these clinics are those that successful ly competed for the primary NIH funding in this area and are likely representative of th e most experienced acad emic programs in the United States. Potential limitations identifie d include researcher bias, a social desirability bias in the key informants and a lack of generalizab ility. This researcher recognizes her own unique construction of reality as a nurse practitioner who provides medical care to HIVinfected adults and who frequently encounters these adolescent duri ng their transfer and admission to adult care. A social desirability bias may also exist due to the lack of anonymity of participants. The participants may have embellished their clinics transition program and alternatively found it difficul t to be completely forthcoming when discussing less than ideal practices. Alternativ ely, staff members may have declined to participate or were not selected to participate by the clinic’s Principal Investigator if he or she had different experiences or opinions about their clinics transiti on programs. There is a lack of generalizability to clinical sites outside the ATN clinic network. The data and findings from this research represent the policies and pr actices of clinics of the Adolescent Trials Network for HIV/AIDS In terventions. In many cases, the adolescent population cared for in these clinics are thos e who are indigent or have government provided health insurance such as Medicar e or Medicaid. Adoles cents whose parents have commercial health insurance and older adolescents who are employed in jobs that provide health insurance may prefer a private practices setting for th eir HIV care. This subset of adolescents with HIV would be expected to have a different set of characteristics that has the potential to affect the success of transition.

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94 Dissemination The first analysis and preliminary results were presented and discussed at two meetings attended by representatives of th e Adolescent Trials Network for HIV/AIDS Interventions. These results were presente d by invitation at a Ryan White Title D program conference in July, 2007 and an Adoles cent Trials Network biannual conference in October, 2007. Poster presenta tions were offered at the 20th Annual Conference of the Association of Nurses in AI DS Care in November 2007 and at the Annual Meeting of the Society for Adolescent Medicine in April 2008. This more extensive data analysis and find ings will be disseminated locally to the staff at the ATN site at the University of South Florida as well as the Ryan White funded adult clinics in Hillsborough a nd Pinellas counties. An abbrevia ted report of these finding has been prepared for submission to AIDS Car e, a peer-reviewed HIV specialty journal. Implications for Nursing Practice The findings of this stud y support the role of nurs es in the transition of adolescents with HIV in pediat ric, adolescent, and adult practice as well as in both inpatient and out-patient settings. Nurses are educated to consider the holistic individual together with his or her famil y and environment. Nurses c onsistently use developmental theory to provide the most appropriate level of care. Nurses often have more contact with the patient than any other member of the health care team and are in a pivotal position to assess, plan and provide interventions to assi st the adolescent in acquiring the education and skills necessary for a successful transition. There was consensus in the literature re garding the scarcity of adult providers interested and skilled in the care require d by chronically ill young adults (Houser &

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95 Dorn, 1999; McDonough, Fo ster, Hall, & Chamberlain, 2000 ; Reiss et al., 2005; Scal, Evans, Blozis, Okinow & Blum, 1999; S cal, 2002; Schidlow & Fiel, 1990; Sinnema, Bonarilus, Laag, & Stoop, 1988). Nurse practition ers (NPs) are one of the largest groups of providers of primary care for children, adolescent and a dult patients with HIV disease in the United States. A nurse practitioner certi fied in family or adult practice possesses the skills and credentials to provide care to adolescents with HIV during these young adult years. A nurse practitioner would be the ideal provider to act as the identified health care professional who assumes responsibility fo r current health care, care coordination, and future health care planning for these a dolescents both in the adolescent setting and the adult setting. Nurses are known for their ab ility to successfully function in multiple roles within complex healthcare environm ents. Strengths in communication, patient education, health promotion, and patient advo cacy combine to make nurses ideal project directors for transition progr ams. Nurse researchers ar e active in adolescent HIV prevention, treatment and transiti on research and continue to contribute to this growing body of knowledge. Recommendations for Future Studies Respected leaders in the fi eld of qualitative research methodology acknowledge that qualitative research is most appropri ate when discovering and exploring a new area (Corbin & Strauss, 2008; Miles & Huberman, 1994; Patton, 2002). Additional qualitative investigations of the adolescents with HI V disease both during transition and following transition (transfer) are critical to a better understanding of th e current state of transition practice and to obtain a more comprehensive idea of elements to include in transition programs.

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96 It would seem apparent that adult provider s of HIV care need to be represented in this formative research to de termine their perspective on the status of adolescents that have transitioned as well as their expectations in terms of knowledge and skills that are needed for HIV self-care. This essential know ledge and skills could be compared to those being emphasized during adolescent transition experiences. Identification of the requisite set of knowledge and skills would logically l ead to the development of a psychometric tool for assessment. Stakeholders in the success of transiti on that include the adolescent providers, adult providers but most impo rtantly the patients should collectively discuss and decide what are acceptable and meas urable outcome criteria fo r a successful transition. From the perspective of this researcher who has a special interest in health communication and patient-provide r relationships, it would be interesting to assess if the strength of the relationship and qualities of the relationship between patient and provider can affect transition experiences as suggested in the literature rela ted to HIV medication adherence. Summary The purpose of this study was to identi fy and describe th e characteristics, structured processes and practice models curre ntly being used in the transition of HIVinfected adolescents from child-centered me dical care to adultcentered medical care within the ATN systems of car e, a unique network of pediat ric HIV clinics that manage the care of the largest cohort of children a nd adolescents with HIV in the United States. Examples of practice models that were used in several of clinics that had a structured transition program were described. Ideas for future research were suggested. From these

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97 and other data, clinical care-based deliv ery systems can be designed, implemented, evaluated, and an evidence base can be estab lished that addresses the transition needs of this unique population. In summary, research in the domain of transition from chil d-centered care to adult-centered care began in th e 1980’s. Efforts have been made during these twenty years to improve the transition for children with special hea lth care needs but successful models for transition programs remain elusive. Betz (2008) declared “t he critical mass of need evidenced by the growing numbers of adolescents with special health care needs requiring transition services from a system of care still unprepared to meet them can no longer be ignored or to lerated” (p. 13). Professionals who care for children, adoles cents and adults with HIV disease and AIDS are now addressing this issue as adolescents with HIV disease are beginning to transfer to adult care. Cervia (2006) commented that “few diseases better illustrate the potential complexities of transitioning th an does HIV/AIDS” (p. e1). Based on the transition literature and the findi ngs from this study, this re searcher would like to propose a definition of health care tr ansition that may serve as a template upon which a model program can be designed. Health care transiti on is a process of l earning, developing and maturing that promotes the change of an adolescent with special health care needs into an adult that is capable of self-care and successf ul interaction with adult systems of care. The process begins early and occurs over a period of time. Transi tion is individualized and planned to be developmentally and culturally appropriate. This learning process facilitates the development of a young adult who possesses the knowledge, skills, motivation and self-efficacy to begin to function independently as an adult.

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98 This researcher recently received an ema il from one of the Prin cipal Investigators in the ATN network. With his permission to quote, he asked, “Could you update me as to the status of your “Transiti ons” protocol? Our issue is becoming ever more acute and I’d appreciate ANY evidence based help I can ge t (L.J. D’Angelo, pe rsonal communication, February, 2, 2009). There is much work yet to be done.

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99 References Cited Adolescent Trials Network for HIV/AIDS Interventions (ATN). (Updated, August 22, 2006). National Institutes of Health, Na tional Institute of Child Health and Human Development. Retrieved November 16, 2008 from http://www.nichd.nih.gov/re search/supported/atn.cfm AIDS Education & Traini ng National Resource Center (2006). Adolescent HIV/AIDS workshop training excha nge. Adolescent HIV/AIDS workshop training exchange. Retr ieved October 8, 2008 from http://www.aids-ed.org/ai dsetc?page=cf-adolte-00 American Academy of Pediatrics. (2000) The role of the pediatrician in transitioning children and adolescents with developm ental disabilities and chronic illnesses from school to work or co llege. Pediatrics, 106, 854-856. Antiretroviral Therapy Cohort Collaboration. (2008). Life e xpectancy of individuals on combination antiretroviral therapy in high-income countri es: A collaboration analysis of 14 cohort studies. Lancet, 372 (9635), 293-299. Betz, C.L. (1998). Facilitating the transition of adolescents with chronic conditions from pediatric to adult health care and community settings. Issues in comprehensive pediatric nursing, 21, 97-115. Betz, C.L. (2004). Transition of adolescents with special health care needs: Review and analysis of the literature. Issues in Comprehensive Pediatric Nursing, 27 179-241.

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100 Betz, C.L. (2008). Health care tr ansitions of youth with special health care needs: The never ending journey. Communicating nursing research, 41 13-29. Blum, R.W., Garrell, D., Hodgman, C.H., Jorisse n, T.W., Okinow, N.A., Orr, D. P. et al. (1993). Transition for child-centered to a dult health care systems for adolescents with chronic conditions: A position paper of the Society of Adolescent Medicine. Journal of Adolescent Health, 14 (7), 570-576. Blum, R. W. (1995). Transi tion to adult health care: Setting the stage. Journal of Adolsecent Health, 17 3-5. Blum, R. W., Hirsch, D., Kastner, T.A ., Quint, R.D. & Sandler, A.D. (2002). A consensus statement on health care tran sitions for young adu lts with special health care needs from the American A cademy of Pediatrics American Academy of Family Physicians, and the American College of Physicians, American Society of Internal Medicine Pediatrics, 110 1304-1306. Blum, R., White, P.H., & Gallay, L. (2005) Moving into adulthood for youth with disabilities and serious health concer ns. Network on Transitions to Adulthood: Policy Brief. Retrieved February 2, 2009 from http://www.transad.pop.upenn.edu/downloads /blum%20disabilities%20final.pdf. Brown, L.K., Lourie, K.J., & Pao, M. (2000). Children a nd adolescents living with HIV and AIDS: a review. Journal of Child Psychiatry, 41 81-96. Callahan, S.T., Winitzer, R.F., & Keenan, P.K. (2001). Transi tion from pediatric to adultoriented health care: a challenge for patients with chronic disease. Current Opinions in Pediatrics, 13, 310-316,

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102 D’Angelo, L., Brown, R., English, A., Hein, K., & Remafedi, G. (1994). HIV infections and AIDS in adolescents: a position paper of the Society for Adolescent Medicine. Journal of Adolescent Health, 15, 427-434. D’Angelo, L., Samples, C., Rogers, A.S., Peralta, L., & Friedman, L. (2006). HIV infections and AIDS in adolescents: An update of the position paper of the Society for Adolescent Medicine. Journal of Adolescent Health, 38, 88-91. Fielden, S.J., Sheckter, L., Ch apman, G.E., Alimenti, A., Forb es, J.C., Sheps, S., et al. (2006). Growing up: Perspectives of children, families and service providers regarding the needs of older child ren with perinatally-acquired HIV. AIDS Care, 18 (8), 1050-1053. Flum, P.A., Taylor, L.A., Anderson, D.L., Gray, S., & Turner, D. (2004). Transition programs in cystic fibrosis cente rs: perceptions of team members. Pediatric Pulmonology, 37 4-7/ Futterman, D.C. (2004). HIV and AIDS in adolescents. Adolescent Medical Clinics, 15 (2), 369-391. Futterman, D.C. (2005). HIV in adolescen ts and young adults: half of all new infections in the United States Topics in HIV Med 13 (3), 101-105. Geenen, S.J., Powers, L.E., & Sells, W. (2003) Understanding the role of health care providers during the transiti on of adolescents with disabi lities and special health care needs. Journal of Adolescent Health, 32 (3), 225-233. Greenwood, D.J., & Levin, M. (1998 ). Introduction to acti on research: Social research for social change Thousand Oaks, CA: Sage Publications. Hall, H. I., Song, R., Rhodes, P., Prejean, J., An, Q., Lee, L. M., et al. (2008). Estimation

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103 of HIV incidence in the United States. Journal of the American Medical Association, 300 (5), 520-529. HIV/AIDS Bureau. Health Resources and Services Administration. (1999.) Serving adolescents: The fundamentals. Retrieved October 8, 2008 from http://www.hab.hrsa.gov/publications/hrsa1299.htm Houser, E.S., & Dorn, L. (1999) Transitioning adolescents with sickle cell disease to adult-centered care Pediatric Nursing, 25 479-488. Koop, C.E. (1989). Surgeon General’s Conf erence, “Growing up and getting medical care: Youth with special h ealth care needs”. In P. R. Magrab & H.E.C. Millar (Eds), A summary of conference pro ceedings. Retrieved January 18, 2009 from http://www.profiles.nlm. nih.gov/NN/B/C/Z/T_/nnbczt.pdf Lincoln, Y.S., & Guba, E.G. (1985). Naturalistic inquiry Newbury Park, CA: Sage Publications, Inc. Lindegren, M.L., Byers, R.H., Thomas, P., Davis, S., Caldwe ll, B., & Rogers, M. (1999). Trends in perinatal transmission of HIV/AIDS in the United States. Journal of the American Medical Association, 282, 531-538. Lotstein, D.S., Ghandour, R., Cash, A., Mc Guire, E., Strickland, B., & Newacheck, P. (2009). Planning for health care transi tions: Results from the 2005-2006 national survey of children with special health care needs. Pediatrics, 123 145-152. Mason, J. (1996). Qualitative Researching Thousand Oaks, CA: Sage Publications. Maternal and Child Health Bureau. (n.d.). Achieving and measuri ng success: A national agenda for children with special heal th care needs. Retrieved January 22, 2009 from http://mchb.hrsa.gov/programs/sp ecialneeds/measuresuccess.htm

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104 McDonagh, J.E., Foster, H.E ., Hall, M.A., & Chamberlai n, M.A. (2000). Young adults with special health care n eeds: prevalence, severity, and access to health services. Pediatrics, 86 674-682. Melgar, T., Brands, C., & Sharma, N. (2005). Health care transition. Pediatrics, 115 1449-50. Mertens, D. (2004). Research and evaluation in education and psychology: Integrating diversity with quantit ative, qualitative, and mixed methods ( 2nd ed.) Thousand Oaks: Sage Publications. Miles, K., Edwards, S., & Clapson, M. ( 2004). Transition from paediatric to adult services: experiences of HIV-positive adolescents. AIDS Care, 16 (3), 305-314. Miles, M., & Huberman, A. (1994). Qualitative data analysis, 2nd Ed. Thousand Oaks: Sage Publications. Muhr, T. (2004). User's Manual for ATLAS.ti 5.2 ATLAS.ti: GmbH, Berlin:Scientific Software Development. Nasr, S. Campbell, C., & Howatt, W. (1992). Transition program from pediatric to adult care in cystic fibrosis patients. Journal of Adolescent Health, 13 682-685). Panel on Antiretroviral Guidelin es for Adults and Adolescents (2008). Guidelines for the use of antiretroviral agents in HIV-1-in fected adults and adolescents. Department of Health and Human Services. Nove mber 3, 2008, 1-139. Retrieved February 2, 2009 from http://www.aidsinfo.nih.gov/Guidelines /GuidelineDetail.as px?MenuItem=Guideli nes&Search=Off&GuidelineID=7&ClassID=1

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105 Patterson, D., & Lanier, C. (1999). Adolescent health transitions: Focus group study of teens and young adults with special health care needs. Family and Community Health, 22 43-58. Patton, M.Q. (2002). Qualitative research and evaluation methods. (3rd ed.). Thousand Oaks, CA: Sage Publications. Peter, N.G., Forke, C.M., Gi nsburg, K.R. & Schwarz. (2009). Pediatrics, 123 417-423. Pumariega, A.J., Shugart, M.A., & Pumari ega, J.B. (2006). HIV/AIDS among children and adolescents. In F. Fernandez & P. Ruiz (Eds.) Psyc hiatric aspects of HIV/AIDS (pp. 259-266). New York: Lippincott, Williams & Wilkins. O’Connell, B., Bailey, S., & Pearce, J. (2003) Straddling the pathway from paediatrician to mainstream health care: Transition issues experienced in disability care. Australian Journal of Rural Health, 11 57-67. Reid, G.J., Irvine, M.J., McCr indle, B.W. Sananes, R., R itvo, P.G., & Siu, S.C., et al. (2004). Prevalence and correlates of successf ul transfer from pediatric to adult health care among a cohort of young a dults with complex congenital heart defects. Pediatrics, 115 (3), 197-205. Reiss, J. & Gibson, R. (2002). Health care transition: Destinations unknown. Pediatrics, 110 307-1314. Reiss, J.G., Gibson, R.W., & Wa lker, L.R. (2005). H ealth care transitions: Youth, family and provider perspectives. Pediatrics, 115 112-120. Robson, C. Real world research: A resource for social scientists and practitionerresearchers. (2nd ed.). Malden, MA: Blackwell Publishers.

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106 Rosen, D.S., Blum, R.W., Britto, M., Sawyer, S.M., & Si egal, D.M. (2003). Transition to adult health care for young adults with chronic conditions: Position paper of the Society for Adolescent Medicine. Journal of Adolescent Health, 33, 309-311. Rosen, D. (1995). Between two worlds: Bridgi ng the cultures of child health and adult medicine. Journal of Adolescent Health, 17 10-16. Sawin, K.J., Cox, A.W., & Metzger, S.G. (1999). Transition planning for youth with chronic conditions. National Academies of Practice Forum, 1 (3), 183-187. Scal, P., Evans, T., Blozis, S ., Okinow, N., & Blum, R. (1999) Trends in transition from pediatric to adult health care services for young adu lts with chronic conditions. Journal of Adolescent Health, 24, 259-264. Scal, P. (2002). Transi tion for youth with chronic cond itions: Primary care physicians’ approaches. Pediatrics, 110 (6), 1315-1321. Schidlow, D., & Fiel, S. (1990). Life bey ond pediatrics: Transition of chronically ill adolescents from pediatric to adult health care systems. Adolescent Medicine, 74 (5), 1113-1120. Sinnema, G., Bonarilus, H., Laag, H., & Stoop, J. (1988). The development of independence in adolescents with cystic fibrosis. Journal of Adolescent Health Care, 9, 61-66. Speziale, H., & Carpenter, D. (2007). Qualitative research in nursing: Advancing the humanistic imperative (4th ed.). New York: Lippi ncott Williams & Wilkins. Telfair, J., Alexander, L.R., Loosier, P.S ., Alleman-Valez, P.L., & Simmons, J. (2004). Providers’ perspectives and beliefs regarding transition to adult care for

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107 adolescents with sickle cell disease. Journal of Health Care for the Poor and Underserved, 15 443-461. The Antiretroviral Therapy Cohort Collabor ation. (2008). Life expectancy of individuals on combination antiretrovir al therapy in high -income countries: A collaboration analysis of 14 cohort studies. Lancet, 372 293-299. Valleroy, L.A., MacKellar, D.A., Karon, J.M., Janssen, R. S. & Hayman, C.R. (1998). HIV infection in disadvantaged out-of school youth: prevalence for U.S. Job Corps entrants, 1990-1996. Journal of Acquired Immunodeficiency Syndrome Human Retrovirology, 19, 67-73 Vazauez, E. (2006). No longer a child: Transitioning into a dult care terrifies youth with HIV. Positively aware, July, 19-20. Vijayan, T., Benin, A.L., Wagner, K., Romano, S., & Andiman, W.A. (2008). We never thought this would happen: transitioning care of adolescents with perinatallyacquired HIV infection from pedi atrics to internal medicine. Manuscript submitted for publication. Yale Universi ty and the University of California-San Francisco. Viner, R. (2000). Effective transitio n from pediatric to adult services. Hospital Medicine, 61 341-343. Viner, R.M. (2008). Transition of care from paediatric to a dult services: one part of improved health services for adolescents. Archives of Disabled Children, 93 160163.

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108 Wagner, K., Murphy, A., Holmes, J., & Romano, S. (2008, August). Transitioning adolescents to adult HIV care. Post session presented at the biannual meeting of the International AIDS Soci ety, Mexico City, Mexico. Weiner, L., Zobel, M., Battles, H., & Ryde r, C. (2007). Transiti on from a pediatric HIV intramural clinical research program to adol escent and adult communitybased care services: Asse ssing transition readiness. Social Work Health Care, 46 (1), 1-19.

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109 Appendices

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110 Appendix A Adolescent Trial Network Clinical Sites and Principal Investigators University of South Florid a Children’s Hospital Tampa, FL Philadelphia, PA Dr. Patricia Emmanuel Dr.Bret Rudy University of Miami Montefiore Medical Center Miami, FL Bronx, NY Dr. Lawrence Friedman Dr. Donna Futterman Children’s Diag. & Treatment Center Mount Sinai Medical Center Ft. Lauderdale, FL New York, NY Dr. Ana Puga Dr. Linda Levin Children’s Hospital Univ. of Maryland Boston, MA Baltimore, MD Dr. Cathryn Samples Dr. Ligia Peralta St. Jude’s Research Hospital Children’s National Med. Ctr. Memphis TN Washington, D.C. Dr. Patricia Flynn Dr. Lawrence D’Angelo Children’s Memorial Hospital and Univ. of California Howard Brown Health Ce nter San Francisco Chicago, IL Dr. Barbara Moscicki Dr. Rob Garofalo Cook County Hospital Children’s Hospital Los Angeles Chicago, IL Los Angeles Dr. Jaime Martinez Dr. Marvin Beltzer

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111 Appendix B Transitional Care Coordi nator Interview Schedule 1. Does your ATN site care for children of all ages with HIV or adolescents only? 1=All ages, up to ______ yrs. 2=Adolescents only, up to _____ yrs. How many total adolescent patients do you care for in your clinic? ______ 2. Does your ATN site have a specific ag e range that is considered adolescence? 1= NO 2= Yes If yes, what is the age range? _______________ 3. Is transition from adolescent care to a dult care an option at your care site? 1=No 2=Yes If NO, why is it not an option? 4. Is a specific member of the health care team at your site the point person or the main one responsible for initia ting the transition process? 1=No 2=Yes If yes, what is the official role of that person? Case ma nager, RN, ARNP, MD, other? 5. Do you have written guidelines regarding transition from adolescent to adult care as of January 2007? 1=No 2=Yes If yes, Could you please send it to us if you haven’t already done so. If NO, Could you tell me why your site does not have a policy? Since there is no policy, c ould you describe how your s ite approaches transitions? 6. Are there differences among members of the health care te am in terms of how you go about transition planning? 1= NO 2= Yes If yes, could you describe these to me from your perspective and provide some examples? 7. Can you tell me more about how providers at your site view tr ansitioning adolescents to adult care?

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112 Appendix B (continued) 8. Are there different opinions about how be st to transition adolescents to adult care among the team members? 1=No 2=Yes If yes, Can you tell me more about some of these differences? 9. Are there specific criteria that your team uses when thinking about transitioning a patient to adult care? 1=No 2=Yes If yes, what are these? 10. Are there any tests performed that figure in the decision about whether to transition an adolescent to adult care? 1=NO 2=Yes If yes, what are they? 11. Is there any documentation that is part of the transi tion process at your site? 1=No 2=Yes What are these documents? And did you send us copies? 12. How long does transition us ually take at your site? 13. Can you think of a specific example of a successful transition? If so, why was it successful? 14. Can you think of a specific example of a fa iled transition? If so, why was it a failure? 15. Are there things at your site that facilitate the transition process? 1=No 2=Yes What are these? 16. Are there things at your site that get in the way of the transition process? 1=No 2=Yes What are these? 17. On a scale from 1 to 5, with 1 being the eas iest and 5 being the mo st difficult, could you tell me what your experience has been in terms of being able to transition adolescent patients to adult care? 18. How many adolescent patients has your s ite attempted to transition in the last 12 months? _____ 24 months? _____ 36 months _____ 48 months _____ 19. How many adolescents have successful ly started adult care in the last 12 months? _____ 24 months? _____ 36 months _____ 48 months _____

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113 Appendix B (continued) 20. Does your site have a way to track transitioned patients? 1=No 2=yes If yes, could you describe how you do this? 21. How many of your patients that you know of have been lo st to follow-up or regular care during the transition to adult care? _____ number _____ in what time period? 22. Can you tell me more about the referral sites: Where do you refer most of your patients? Specific name___________________________________________________________ 23. What type of care site is this? 1=University Affiliated Site 2=Public Care Site 3=Community-Based Program 4=Private Provider 5=Other_____________ 24. Do different patients get referred to different sites? 1=No 2=Yes If yes, What affects how you refer a patient to a specific site? 25. Do you believe that the adult site that y ou refer your patients to cares for your patients as well as, better as or worse than your site? 1=Same 2=Better 3=Worse What is it about their care that makes y ou evaluate it as worse/better than the care that you provide? 26. How many adolescents have returned to your site after attempting to transition to adult care in the last 12 months_____ 24 months _____? 27. When an adolescent re turns to your site after attempti ng to transition to an adult care site, what does your site do? Does your site provide care or refer again? 1=refer again 2=provide care 3=other Can you tell me more about this? 28. Have any failures occurred which made your site reluctant to tran sition your patients? 1=No 2=Yes Can you te ll me about that failure?

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114 Appendix B (continued) Thinking about the transitioning at your site: 29. Is it better for an adol escent to transition between? 1=18-20yrs, 2=20-22yrs, 3=22-24yrs, 4= >24yrs, or 5=varies with the individual. If the answer is 5, what are so me of the individual variati ons that would influence the decision to transition? 30. Have you noticed any differences in how your team transitions patients based on their age? 1=No 2=Yes If yes, how does age a ffect the way you transition patients? 31. Have you noticed any differences in how your team transiti ons a patient who has developmental delays or cognitive limitations (meani ng an adolescent who cannot make age appropriate health decisions)? 1=No 2=Yes If yes, how doe s this affect the way you transition patients? 32. Have you noticed any differences in how your team transitions a patient who is a member of a sexual minority or is gay? 1=No 2=Yes If yes, how does th is affect the way you transition patients? 33. Have you noticed any differences in how your team transitions a patient who is a member of a gender minority or is transgendered? 1=No 2=Yes If yes, how doe s this affect the way you transition patients? 34. Have you noticed any differences in how your team transiti ons a patient who is medically complicated? 1=No 2=Yes If yes, how does this affect the way you transition patients? 35. Have you noticed any differences in how your team transitions a patient who has cognitive changes related to HIV? 1=No 2=Yes If yes, how does this affect the way you transition patients? 36. Have you noticed any differences in how your team transitions a patient who becomes pregnant? 1=No 2=Yes If yes, how does this affect the way you transition patients? 37. Have you noticed any differences in how your team transitions a patient who has a long-standing therapeutic relationship with the team? 1=No 2=Yes If yes, how does this affect the way you transition patients? Do you have any further questions, comments concerns, or storie s you would like to share?

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115 Appendix B (Continued) Thank you so much for your participation. This information will be collated, analyzed, and will be available to the ATN as a whole and to each ATN site in aggregate form. If you have any further ques tions or concerns, please f eel free to contact me at (727) 9341728 or by email at pgilliam@health.usf.edu Thank you! Mailing address: Patricia Gilliam, MEd, MSN, ARNP, BC 1131 Mistwood Drive Tarpon Springs, FL 34688 01.29.2007

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116 Appendix C PSC 060 Protocol Team Contact Information Patricia P. Gilliam, MEd, MSN, ARNP, BC Doctoral Candidate College of Nursing University of South Florida pgilliam@health.usf.edu Diane M. Straub, M.D. M.P.H. Associate Professo r of Pediatrics Chief, Division of Adolescent Medicine University of South Florida dstraub@health.usf.edu Jonathan M. Ellen, M.D. Professor of Pediatrics Deputy Chief of Adol escent Medicine Johns Hopkins University College of Medicine jellen@jhmi.edu Lori Leonard, ScD Associate Professor Bloomberg School of Public Health Johns Hopkins University Lleonard@jhsph.edu Sara B. Kinsman, M.D. Ph.D. Assistant Professor of Clinical Pediatrics Division of Adol escent Medicine Children’s Hospital of Philadelphia kinsman@email.chop.edu

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117 Appendix D Original IRB Exempt Certification

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118 Appendix D (continued)

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119 Appendix E Revised IRB Exempt Certificate # 105455F

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120 Appendix E (continued) We appreciate your dedication to the ethical conduct of hu man subject research at the University of South Florida and your continued commitment to human research protections. If you have any questions regarding this matter, please call 813-974-9343. Sincerely, Paul G. Stiles, J.D., Ph.D., Chairperson USF Institutional Review Board Cc: Anna Davis/cd, USF IRB Professi onal Staff SB-EXEMPT-MOD-0801

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121 Appendix F Memorandum of Agreement

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122 Appendix F (continued)

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123 Appendix F (continued)

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About the Author Patricia Pyland Gilliam has a B.S. degree in Chemistry Education, an M.Ed.degree in Exercise Physiology and an M.S.N. in Nursing. She has a Ph.D. from the University of South Florida in Nursing Science. She is cu rrently employed by St. Joseph's Hospital's Tampa Care Clinic where she practices as a nurse practitioner in Adult HIV/AIDS care. She holds certifications as an Adult Nurs e Practitioner with the American Nurses Credentialing Center and as an HIV Specialist with th e American Academy of HIV Medicine.


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Transitional care for adolescents with HIV :
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ABSTRACT: Background: Advances in antiretroviral therapy have resulted in a significant increase in life expectancy for HIV-infected individuals, with more pediatric patients transitioning to adult care. The transition process from pediatric to adult care for adolescents with chronic diseases, such as HIV, is always a challenge. Purpose: The purpose of this secondary data analysis was to describe the characteristics, processes and practice models used by the Adolescent Trials Network (ATN) systems of care that assist adolescents with HIV disease to transition from child-centered care to adult-centered care. Method: This study used health care providers affiliated with the Adolescent Trials Network of HIV/AIDS Interventions (ATN) as key informants. One to three representatives from each site considered to be the most knowledgeable staff member(s) involved with their clinic's transition practice were interviewed.Analysis: The data set consisted of fourteen audio-taped interviews with nineteen key informants, as well as clinic documents that were submitted for review. An a priori coding framework was prepared prior to the initial preliminary analysis based on the study research questions and the interview questions. This initial coding framework was refined using the constant comparative method and subsequent coding discrepancies in the remaining analysis were resolved by consensus. Transcripts and clinic documents were analyzed using content analysis within an ATLAS.ti data management system. Results: Interviews were conducted with 19 staff members (7 social workers, 7 nurse practitioners, 3 physicians, 1 registered nurse, and 1 health educator) from 14 ATN clinics. There was a general consensus from site representatives as they described perceived facilitators of a successful transition and barriers to a successful transition. Descriptions of practice models were provided.Conclusion/Discussion: Two unanticipated findings were the lack of a consensus on the definition of "transition" and what constitutes a "successful" transition. Anecdotal evidence seemed to provide a consensus of opinions from the key informants when asked to describe facilitators and barriers to a successful transition. Examples of practice models that were used in several clinics with a structured transition program were described. Ideas for future research were suggested. A definition of health care transition is proposed.
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