UNLABELLED: Managing the transition of adolescents from paediatric to adult care is complex and remains an important challenge. This aim of this study was to synthesize studies on perspective on transition to adult care among young people with diabetes or chronic kidney disease. We conducted a systematic review of surveys and qualitative studies that explored adolescent perspectives on transition to adult care in diabetes and chronic kidney disease. Searches were conducted to week 4, June 2010. For quantitative questionnaires, all items were mapped into a domain schema. Thematic synthesis of the qualitative findings was performed. Fourteen studies involving 854 respondents were included. The majority of participants felt somewhat prepared but had reservations about transfer. Five major themes were identified: (1) preparedness (timing of transfer, access to providers, parental involvement), (2) overwhelmed by an impersonal environment in adult service (sterile and unwelcoming, navigating new processes, feeling displaced), (3) independence (developing self-esteem and an adult identity, taking responsibility and ownership), (4) valuing familiarity (building trust, peer support) and (5) service and information needs (leniency, lack of access, efficiency, information needs). CONCLUSION: Holistic and adolescent focussed transition programs are needed which address adolescent needs by providing adequate access to health services, encouraging independence and ownership of health management, promoting trust in providers, giving comprehensive information about what to expect and how to navigate adult services and facilitating interaction with younger patients.
UNLABELLED: Managing the transition of adolescents from paediatric to adult care is complex and remains an important challenge. This aim of this study was to synthesize studies on perspective on transition to adult care among young people with diabetes or chronic kidney disease. We conducted a systematic review of surveys and qualitative studies that explored adolescent perspectives on transition to adult care in diabetes and chronic kidney disease. Searches were conducted to week 4, June 2010. For quantitative questionnaires, all items were mapped into a domain schema. Thematic synthesis of the qualitative findings was performed. Fourteen studies involving 854 respondents were included. The majority of participants felt somewhat prepared but had reservations about transfer. Five major themes were identified: (1) preparedness (timing of transfer, access to providers, parental involvement), (2) overwhelmed by an impersonal environment in adult service (sterile and unwelcoming, navigating new processes, feeling displaced), (3) independence (developing self-esteem and an adult identity, taking responsibility and ownership), (4) valuing familiarity (building trust, peer support) and (5) service and information needs (leniency, lack of access, efficiency, information needs). CONCLUSION: Holistic and adolescent focussed transition programs are needed which address adolescent needs by providing adequate access to health services, encouraging independence and ownership of health management, promoting trust in providers, giving comprehensive information about what to expect and how to navigate adult services and facilitating interaction with younger patients.
Authors: Susan M Fernandes; Joanne O'Sullivan-Oliveira; Michael J Landzberg; Paul Khairy; Patrice Melvin; Gregory S Sawicki; Sonja Ziniel; Lisa B Kenney; Katharine C Garvey; Amy Sobota; Rebecca O'Brien; Peter A Nigrovic; Niraj Sharma; Laurie N Fishman Journal: J Pediatr Rehabil Med Date: 2014