NSW Brain Injury Rehabilitation Forum May 2011

 

Back to: PROGRAMME : ABSTRACTS : VIDEOS

 

Transition from paediatric to adult brain injury services:
a survey of the family's experience
MARIE NAZAR, Children's Hospital Westmead

 

Title: Transition from paediatric to adult brain injury services: a survey of the family's experience

Authors: Mary-Clare Waugh, Juanita Noronha, Marie Nazar, Elizabeth Nguyen, Patricia Murphy, The Children's Hospital at Westmead

Objective: During adolescence, youth with acquired brain injuries (ABI) will transition from paediatric to adult health services. Identifying facilitators and barriers to successful transition is essential for developing effective transition programs. Empirical studies of ABI transition programs are lacking. Suitable programs need to accommodate the behavioural, social and cognitive impairments of the youths. The study evaluates a transition program which includes, amongst other strategies, information packages, transition planning commencement at 15-16 years of age, and joint meetings with adult services.

Participants and Methods: Case-series design, examining family and client transition experiences before and after implementation of a formalised transition process in the Kids Rehab Dept. Brain Injury Service. The department database identified youths discharged before (Group A -no program), and after (Group B - formalised program) program implementation. Randomly selected participants were telephone interviewed using standardised questionnaires covering areas such as availability and uptake of adult services, parent opinions, and user satisfaction. Forty-one questionnaires (31 family, 10 client) regarding 32 cases (Group A; n=14, Group B; n=18) were collected.

Results: Data was qualitative and collated in tables. The program was found to have greater impact on family than on client perceptions. Feedback and improvement suggestions varied between and within groups. In general, Group B reported better transition experiences and greater awareness of adult services than Group A.

Conclusions: Families are now better informed, though concerns regarding service availability for ABI youth in the adult sector remain. The study identifies tacilitators and barriers to transition from which service providers for youth with special health care needs will benefit. The program has moved some way in improving transition however further research is required.