OBJECTIVE: To identify the strengths and limitations of health care and related services provided to young adults with a disability during the period of transition from the care of a paediatrician to the mainstream health system. DESIGN: A descriptive design was used to address the study objectives. SETTING: Barwon and south-western region of Victoria. SUBJECTS: Twelve focus group discussions, with young adults with a disability, carers of young adults with a disability and health care service providers. Each focus group involved eight to 10 participants. RESULTS: The findings revealed a number of problems with the transition period. All participants acknowledged the supportive, coordinating role of the paediatrician. In the absence of this type of role, carers felt they lacked the knowledge and support to manage the adolescent with a disability. Communication problems between all service providers were identified as being problematical. The general lack of continuity of care between providers made it difficult for individuals to negotiate the transition period and increased the burden of care on carers. CONCLUSION: There is a need for policy makers to address these transition problems and develop appropriate services that improve the situation for young adults with a disability and their carers.
OBJECTIVE: To identify the strengths and limitations of health care and related services provided to young adults with a disability during the period of transition from the care of a paediatrician to the mainstream health system. DESIGN: A descriptive design was used to address the study objectives. SETTING: Barwon and south-western region of Victoria. SUBJECTS: Twelve focus group discussions, with young adults with a disability, carers of young adults with a disability and health care service providers. Each focus group involved eight to 10 participants. RESULTS: The findings revealed a number of problems with the transition period. All participants acknowledged the supportive, coordinating role of the paediatrician. In the absence of this type of role, carers felt they lacked the knowledge and support to manage the adolescent with a disability. Communication problems between all service providers were identified as being problematical. The general lack of continuity of care between providers made it difficult for individuals to negotiate the transition period and increased the burden of care on carers. CONCLUSION: There is a need for policy makers to address these transition problems and develop appropriate services that improve the situation for young adults with a disability and their carers.
Authors: Katherine Bailey; Stephanie Lee; Thomas de Los Reyes; Lisha Lo; Jan Willem Gorter; Alene Toulany Journal: BMJ Open Date: 2021-11-01 Impact factor: 2.692