Table 2 Qualitative studies
Authors | Location/Design | Population | Themes |
|---|---|---|---|
Hussen et al., 2019 [46] | • United States • Qualitative semi-structured focus groups | • N = 24 • Providers in four groups (2 from pediatric clinic, 2 from adult clinic) | Three types of HCTs were described: • Ideal transitions would include HCT planning a year in advance and prepare ALWH for a major shift. • Abrupt transitions that result from medical needs are linked to treatment non-adherence • De Facto transitions where adolescents disengage in care and then re-engage in care after turning 25 years old Poor engagement in pediatric care was linked to poor engagement in adult care. |
Bundock et al., 2011 [12] | • Australia, UK • Cross-sectional study comparing patient satisfaction at a U.K. HIV transition clinic and an Australian diabetes transition clinic | • N = 21 PHIV in UK • Sex = 57% female • N = 39 young people with diabetes in Australia • Sex = 56% female | • 18/19 PHIV reported an easy transition process compared to 34/39 of those with diabetes who felt their transition to adult care was easy. • 13/19 PHIV and 28/39 diabetes patients reported their HCT had a positive impact on their health. • All PHIV reported the transition clinic to be preferable to the adult clinic • The most important concerns were the staff’s ability to communicate with young people, preparation for the physical transition and transition in responsibility, and feeling comfortable discussing personal health. |
Katusiime et al., 2013 [47] | • Uganda • Thematic analysis of semi-structured interviews with adolescents post-transition | • N = 30 • Patients at least 1 year after HCT | The study identified six major themes: • Adjustment to health care providers • Adult clinic logistics • Positive attributes of adult clinic, like specialized care • Transfer to other health centers • Perceived sense of stigma • Patient recommendations for staff in adult clinic such as gaining experience working in transition or pediatric clinic |
Machado et al., 2016 [48] | • Brazil • Thematic analysis of semi-structured interviews with adolescents | • N = 16 ALWH who were part of transition protocol • Sex = 50% female • Median age = 17 years | • Participants noted turning points in their lives related to their transition and identified social support as a pivotal factor to dealing with it. • The bond between pediatric providers and patients was another important aspect of care, so HCTs brought concerns about disruption and abandonment. • Adult care was negatively perceived. • ALWH recommended more time to adapt during the HCT process and more communication between providers in both settings. |
Miles et al., 2004 [49] | • UK • Thematic analysis of semi-structured interviews with adolescents | • N = 7 • Median age = 16 years | Themes were identified based on transition phase (pre, during, post) with subthemes identified for each. • Pre-transition: Participants identified the benefit of introductions to adult-care providers and anxieties about care coordination and the adult environment • The actual transition: Four participants found the transition easy, while three delayed their transition due to greater trust in pediatric clinic • Post-transition: All participants identified benefits of transition, most identified importance of losing relationships with pediatric clinic physicians, and recommendations were made about pre-transition visits and youth-friendly environments. |
Sharma et al., 2014 [50] | • USA • Grounded theory analysis of structured interviews with adolescents and their guardians | • N = 15 youths, 8 caregivers • Mean age of patients = 18 years | Three major themes were identified: • Lack of preparation for the HCT expressed by both youth and caregivers • Anxiety about changing providers and health care settings • Concerns about increase in responsibility with time |
Valenzuela et al. 2011 [51] | • USA • Thematic analysis of semi-structured interviews with adolescents | • N = 10 patients who completed HCT • Mean age = 26.7 years | Six themes were identified: • Providers acting as family in adolescent care • Adolescent care as a time to learn about the disease and grow • Anxiety and lack of preparation for HCT Recommendations for improving HCT • Change in experience of care with shift to adult care • Opportunities for growth in adult care |
• France • Thematic analysis of semi-structured interviews with health providers | • N = 18 | Three major problems during transition that were identified included: trouble accepting the disease, communication challenges in linking from pediatric to adult care, and difficulty navigating the new health care environment. |