Young people with an acquired brain injury: Development of a pilot program to support their transition to adulthood

Abstract

The transition into adulthood is one of significance as societal expectations require a person to participate in adult occupations that contribute to their community. While the significance of transition has been well recognised, consideration is still being given to how this process can be best supported. Health care transition is seen as the planned movement of young people with chronic conditions from paediatric to adult orientated care systems. Processes surrounding transition to adult health services became topical when it was realised that young people have a heightened risk of being lost to medical follow up during this time, impacting their long term health outcomes. Discussion regarding what is best practice to facilitate transition between services has resulted in a number of guiding principles being advanced. The need to prepare and guide families through a gradual process, and address the medical, psychosocial and vocational needs of young people, underpins many of these principles. Acquired brain injury (ABI) can be described as any injury sustained to the brain and may be the result of trauma, stroke, hypoxia, surgery or infection. It has been identified that people who sustain an ABI during childhood are at risk of having poorer outcomes with respect to health, employment and lifestyle compared to their peers and as a result, may require support well into adulthood.The overall aim of this thesis was to ascertain the effectiveness of a formal transition program for young people with ABI. In order to answer the proposed question, two distinct studies were undertaken. The first study focused on program development. This study was exploratory in nature, and sought to gain an understanding regarding the complexities associated with transition for young people with ABI. The specific aims of Study 1 were to: The pilot was successful in meeting the third objective as participants reported overall high levels of satisfaction and client centred care. There were no significant improvements with respect to iv increased knowledge of services available during adulthood or in the level of functional independence of the young person during this period.This study provides insights into the complexities associated for young people with ABI at the time of transition. It indicates that a transition program is required to support these young people navigate these complexities. Preliminary findings indicate that the proposed transitional care program provides client centred care. Non significant change in performance and knowledge related outcome measures however, indicate that further research is required to refine this program.