From Hospital to Home: Transition Experiences and Outcomes following Acquired Brain Injury.

After the onset of severe acquired brain injury (ABI), individuals often experience a prolonged period of hospitalisation as they engage in an intensive inpatient rehabilitation process. This intensive rehabilitation process has been shown to assist individuals with ABI in achieving significant functional gains in preparation for their eventual discharge to the community. While numerous studies have examined longer-term (i.e., greater than two years post discharge) community integration outcomes for individuals with ABI, little is known about the initial period of transition from hospital to home. This thesis aims to investigate the transition experiences and outcomes from hospital to home of adults with ABI and their family caregivers. Specifically, the thesis presents the findings of a series of empirical studies including a literature review, a qualitative pilot study and a multiple methods prospective longitudinal study. First, a comprehensive critical review of the literature was conducted that analysed 50 empirical articles, all of which were identified as presenting findings directly related to individuals with ABI from the time of discharge to one-year post-discharge. The findings of the review highlighted that the transition phase is typically perceived as an exciting yet difficult period for individuals and their families and as such, post-discharge support is critical. Two main transition-based intervention approaches, namely transitional living programs and post-discharge follow-up support programs, were also highlighted from the review. The review concluded that further transition-specific research is necessary to develop a more advanced conceptualisation of the transition phase and to facilitate the development and validation of tailored intervention approaches. Second, a retrospective qualitative pilot study was conducted to explore the transition experiences from hospital to home of a purposive sample of individuals with ABI. This study included 13 individuals with ABI and 11 family caregivers, who were on average 15.2 months post-discharge from inpatient rehabilitation. Participants completed separate semi-structured interviews about their experiences of the transition process. Through inductive/thematic analysis of participant interview transcripts, a summary coding framework was developed that included the following eight main categories: the hospital experience; the transition process; the role of family caregivers; post-discharge services; friendship networks and community involvement; meaningful activities and time management; physical and psychological wellbeing; and barriers and facilitators. The findings of the pilot study provided evidence to support the existence of a distinct transition phase within the ABI rehabilitation continuum; one that is additional to and closely associated with the acute, post-acute and community reintegration phases. However, the need to examine the process of transition prospectively and in more depth (i.e., prior to and following discharge) was also identified. In response to the outcomes of the literature review and pilot study, a multiple methods prospective longitudinal study was conducted to examine key transition outcomes and explore the lived experiences of individuals with ABI and their family caregivers during transition. The first phase of the prospective longitudinal study involved a quantitative investigation to profile early outcomes during the first 3-months following discharge. Based on a consecutive recruitment approach, participants included 26 individuals with ABI and their family caregivers, who were assessed on measures of global functioning, psychosocial reintegration, health-related quality-of-life and emotional well-being at three time points: pre-discharge, 1- and 3-months post-discharge. Changes in outcomes over time and between-group comparisons were examined using repeated measures ANOVAs and post-hoc analyses. The results indicated that participants demonstrated improved global functioning and psychosocial reintegration during the transition period with closer alignment of perspectives (i.e., comparisons between self-ratings of participants with ABI and ratings of family caregivers) at the 3-months post-discharge assessment. Additionally, levels of depression and stress reported by participants with ABI were found to significantly increase over time. The study concluded that the transition phase is a critical time for psychosocial reintegration and emotional adjustment and further emphasised the need for holistic approaches to transition-specific interventions. The second phase of the prospective longitudinal study involved a qualitative exploration of the lived transition experiences of 20 individuals with ABI and their family caregivers. These participants comprised the first 20 participants with ABI who were recruited during the quantitative phase of the multiple methods prospective longitudinal study (i.e., participants completed both phases concurrently). However, the sample size for the second phase of the study was determined by data saturation, which was identified as the point at which no new themes emerged from the data collection processes. All participants involved in the second qualitative phase completed separate semi-structured interviews at three time points; pre-discharge and at 1- and 3-months post-discharge. The primary method of data analysis entailed thematic analysis of the interview transcripts through a process that incorporated open, axial and selective coding techniques. The open and axial coding components of the thematic analysis yielded 34 main categories, which collectively represent the most salient issues that emerged over time during the transition phase from the perspectives of both participant groups. Further in-depth analysis of the 34 main categories during the selective coding component of the thematic analysis process resulted in the formulation of nine primary themes, each with associated secondary themes. These primary and secondary themes form the basis of three separate articles that are included in the thesis. The first article explores the process of recovery during transition and examines the concepts of adjustment and self discovery. This article highlights that while returning home was perceived as a key milestone in the recovery process and an important catalyst for continued functional improvement, managing one’s emotional state in conjunction with adjusting to a changing sense of self, posed a key challenge for participants during transition. The second article explores the process of re-engagement in meaningful occupations during the transition phase and highlights the discrepancy between desired and actual occupational participation. This discrepancy, along with various perceived formal and informal restrictions, presented significant challenges to participants’ pursuit of independence during the transition phase. The third article investigated the service and support needs of individuals with ABI and their family caregivers during transition and highlighted that access to adequate information and advice, post-discharge community rehabilitation, and caregiver support were the most commonly identified unmet needs of participants. It was recommended that the scope of existing service models be extended to more adequately meet the rehabilitation and family support needs of individuals with ABI and their families during transition. The concluding discussion of the thesis provides an examination of the findings with respect to transition-specific intervention approaches and presents a new conceptual framework for transition-based service delivery. The proposed conceptual framework provides an overview of the key elements influencing successful transition. Specifically, the framework highlights the dynamic interaction between service and system-related facilitators, and personal/injury-related indictors and outcomes of transition success. The holistic nature of the framework is designed to guide the development of tailored transition-based services for individuals with ABI and their families. Future recommendations arising from the thesis therefore relate to the application of the conceptual framework for the development of transition-based service approaches. Specific recommendations include exploring the utility of the proposed framework for service delivery across a range of service contexts and examining how new or modified service approaches arising from the application of the framework impact upon the transition experiences and outcomes of individuals with ABI and their families