STRADDLING THE PATHWAY FROM PAEDIATRICIAN TO MAINSTREAM HEALTH CARE: TRANSITION ISSUES EXPERIENCED IN DISABILITY CARE

Abstract

ABSTRACT 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. What is already known: It is well documented that the transition period from paediatrician to adult health care services is problematic for the young adult with a disability and their carer. The difficulties experienced are attributed to poor communication between service providers and a lack of continuity of care. What does this study add: This study provides insights from a number of different consumer and health care professionals’ perspectives. The findings identify service delivery gaps and a need to develop health care services that could assist the young adult with the disability negotiate this transition from the paediatric services to mainstream health care services in rural and regional settings in Victoria.