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: 1. understand the life circumstances of young people with ABI following transition to adulthood, in relation to their living arrangements, support structures utilised, health care management, and participation in work, education, and leisure activities 2. ascertain the current transition practices utilised by the primary paediatric rehabilitation service in a state of Australia (Queensland), and their impact on young people with ABI and their families 3. understand the environmental, social and health context of young people with ABI who are in the process of transitioning from paediatric services 4. identify specific content that could inform a transition program for young people with ABI 5. identify specific transition processes required within a transition program targeted towards young people with ABI.  Data from Study 1 were utilized to develop a transition program. Study 2 was an evaluation of the implementation of this program, with the overarching question: Does the proposed transition program facilitate the transition of young people with ABI and their families as they exit from paediatric rehabilitation services? Transit ion was considered successful when the young person with ABI and his/her family were aware of the adult services available to them after transition. Transition was also considered successful when the young person demonstrated an improvement in the skills necessary to engage in adult life. It was anticipated that this would occur through the provision of client-centred care and the appropriate, timely communication of information on the topics relevant to transition. Therefore, increased awareness, skill development and perceived client-centred care were the markers against which the transition program was evaluated. Study 1 employed a concurrent mixed methodology. Perspectives were gained from 109 stakeholders including young people with ABI aged 18-22 (n =19), their family members (n =26), paediatric rehabilitation clinicians (n =25), adult rehabilitation clinicians (n =23) and community support service providers (n =16). A combination of questionnaires, semi-structured interviews and focus groups were used. Data were analysed using descriptive statistics and content analysis. Within Study 2, 21 young people with ABI and their families participated in a pilot transition program. Quantitative methods using standardised measures and customised questionnaires were used to measure change. Outcome measures included the young person’s and his/her family’s awareness of services available to support young people during adulthood and their independence in skills relevant to adulthood. The specific components of the transition program and the resources developed for use within it were evaluated and the clinical resources required in implementing this program within a paediatric rehabilitation service was explored. Study 1 identified that transition was identified as a complex issue, influenced by the interaction between multiple factors derived from the individual with ABI, their family, the environment and health care setting. Specific content and strategies including goal setting, skills training, family support, education and interagency collaboration were identified as important elements of a transition program for young people with ABI. 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 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. Insights into clinical resources required to provide transitional care services may assist in providing support to service planning.