Valenzuela JM, Buchanan CL, Radcliffe J et al. Transition to adult services among behaviourally infected adolescents with HIV – a qualitative study. Journal of Pediatric Psychology 2011; 36 (2): 134-140
Country: USA
Relevant to review questions: 3 Study design: Qualitative study Method of data collection
e.g. 15 Semi structured interviews & 2 focus groups
Semi-structured interviews conducted with 10 young adults ranging from 24 to 29 years old. Themes were derived from coding participant interviews.
INTERVENTION Description of model/ intervention
All participants had previously been treated at the same HIV clinic in a pediatric hospital with interdisciplinary primary and HIV speciality care for adolescents. A team of physicians, nurse practitioners, nurses, social workers and mental health professionals provided comprehensive care for HIV-positive youth, including individualised transition preparation.
Theoretical model (if given) Not given.
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e.g. diabetesComparator? None.
Setting Multiple adult care settings including hospital-based and community practice-based settings, with care from nurse practitioners and HIV physician specialists.
Who delivered it? A team of physicians, nurse practitioners, nurses, social workers and mental health professionals.
POPULATION
Target recipients (who it was
aimed at) e.g. age, sex, health condition
Study inclusion criteria for participants were: older than 18 years, previously treated at the adolescent clinic for at least 1 year within the prior 5 years, now receiving HIV care by an adult health-care provider and available by telephone. Those with perinatally acquired HIV and/ or with cognitive or health difficulties were excluded. The 10 included participants were aged 24 – 29 years, seven were female. Seven were African-American, two Caucasian and one biracial. Age at diagnosis ranged from 14.9 years to 21.5 years. Time since transition ranged from 2 months to 5 years. Age at transition ranged from 24 to 27 years. Length of time treated by adolescent care providers ranged from 2 years t 11 years.
Outcomes for individuals:
List outcomes, how each was measured (e.g. scale), who measured it and when it was measured.
60 minute semi structured interviews were conducted in a private room and included the following questions:
1. How does your adult HIV care experience compare to your previous pediatric experience?
2. What helped you during your transition?
3. What are some things that have made it harder to transition from pediatric to adult HIV care?
4. What changes would you like to see in place in order to create the ideal transition experience for other young adults with HIV?
Clinical/ health outcomes Not reported (see key issues for young people)
Service delivery,
organisational outcomes.
List outcomes
Theme 4: Recommendations for improving the transition process. Participants recommended early communication and preparation for transition, options and control in the process and assistance with coordination and linking of services.
Adult care
Theme 5: a significant change in the experience of care. Descriptions of adult care centred on differences in both the health care setting and the health care system. Young adults described increased concerns related to dealing more independently with insurance requirements, longer waits and/ or less time with providers.
Whose perspective? List whose views, if any, are reported (e.g. patients, parents, caregivers)
Patients.
Costs/economic matters
State whether paper contains any economic info.
No.
Key process issues - Barriers Insurance referral system; relationship with adult provider; adult clinics displaying indications of infectious disease care; childcare
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issues.Key process issues – facilitating factors
See ‘recommendations’?
Key issues for young people Six broad themes emerged, two in each phase of experience. Adolescent Care
Theme 1: Providers as family. Almost all participants indicated a strong relationship with the adolescent care team. Strong feelings were particularly evident among participants who had disclosed their status to few of their family and friends. Several participants indicated that they developed trust or faith in adolescent team members over time and some continued to communicate with adolescent team members about disease related concerns as well as life events and stressors.
Theme 2: Adolescent care as a time of disease-related learning and growth. Individuals emphasised that they learned about their disease and how to both care for it and themselves and cope with their diagnosis.
Transition
Theme 3: A time of multiple challenges to navigate. Most participants described feeling unprepared for transition and described anxiety and specific worries during the transition process. Participants indicated that the change was overwhelming. Worried included concerns about privacy and health status during transition. Theme 4: Recommendations for improving the transition process. Participants recommended early communication and preparation for transition, options and control in the process and assistance with coordination and linking of services.
Adult care
Theme 5: A significant change in the experience of care. Descriptions of adult care centred on differences in both the health care setting and the health care system. Young adults described increased concerns related to dealing more independently with insurance requirements, longer waits and/ or less time with providers.
Theme 6: Opportunities for personal growth. Participants also experienced adult care as marking a change in provider expectations and interactions. Many felt they were expected to be more responsible with making their appointments, arriving on time and making medical decisions, as compared to adolescent care. Adult care providers spoke more bluntly about their disease, lifestyle and treatment. They were described as less paternal and less flexible. Many of those interviewed felt that as adults they were making healthier choices and/ or had a more positive attitude about their health than when they were younger.
Recommendations for successful transition
Several participants recommended early communication about and preparation for transition, including a time period when both adolescent and adult care providers were being seen.
Participants recommended that youth receive more options and control around choosing a new provider. They emphasised patients
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should be able to try different settings before settling on one. Priorities for adult care differed: some participants cared most about clinic location, while others were more concerned about privacy issues and others wanted to attend a clinic providing childcare or care to both mothers and children with HIV. Participants also indicated that options for care providers were important.
All participants recommended that patients receive assistance coordinating the transition process, including hep enrolling in mental health support and case management ad assistance with the transfer of information between providers.
Any negative impacts reported?
Yes/ No
Individual/ organisational etc.
No.
Limitations/weaknesses of study
As reported by authors
Use of a small predominantly female convenience sample, and retrospective. Young adults in this study had successfully transitioned to adult care form a speciality pediatric clinic in an urban setting. Therefore these findings may not be applicable to those who do not transition to adult care.
Vijayan et al 2009. We never thought this would happen: transitioning care of adolescents with perinatally acquired HIV infection from paediatrics to internal medicine, AIDS Care, 21 (10), 1222- 1229.
Country: USA
Relevant to review questions: 2, 3 Study design: Qualitative study Method of data collection
e.g. 15 Semi structured interviews & 2 focus groups
Individual open-ended interviews with 18 adolescents/ young adults (ages 12-24 years), 15 parents (12 adoptive parents) and 9 paediatric providers (5 attendings , 1 fellow, 1 nurse practitioner, 1 social worker and 1 research nurse) at the Yale-New Haven Children’s Hospital Paediatric AIDS Clinic between November 2005 and April 2006
Interviews lasted 30-60 minutes, were conducted by a single investigator not affiliated with the clinic and were open-ended questions and probes.
Used a written questionnaire (completed after interview) regarding history of sexual activity and drug use as well as a health literacy test, Rapid Estimate of Adult Literacy in Medicine (REALM) which calculates a grade equivalent.
INTERVENTION Description of model/ intervention
No intervention for transition in place – study relates to young peoples’ experiences of transition as it happened.
Theoretical model (if given) None Condition
e.g. diabetes
HIV
Comparator? n/a
Setting Yale Pediatric AIDS Care Programme, New Haven, Connecticut Who delivered it? n/a
Description of model/ intervention
n/a
POPULATION