Social inclusion following childhood acquired brain injury (ABI) has never before been researched. Related concepts, such as friendship and participation, have received attention during the last decade. However, these studies have mainly been small-scale quantitative efforts, relying on caregiver report and neglecting children's perspectives. This research aimed to explore the social inclusion of children with ABI from multiple perspectives and employing multiple methods. A second aim of the study was to ascertain if two current psychometric measures of social functioning could be utilised to capture the children's experiences of social inclusion. A purposive sample of nine children with ABI, mothers (n=9), teachers (n=9) and peers (n=100) were recruited through a charity in Northern Ireland. The children and their mothers participated in semi-structured interviews, which were analysed using Interpretative PhenomenologicaI Analysis. Analysis of the children's interviews generated five super-ordinate and nine subordinate themes, and focused on their experiences of social inclusion, rejection and conflict, and the personal impact of ABI on the self-concept and on coping. The analysis of the mothers' data yielded four super-ordinate and twelve subordinate themes, which described the impact of ABI on the family, the changes to the child, protection after ABI, and the child's return to social life. In addition to the interviews, children, mothers and teachers completed two psychometric measures of social functioning, the Child Behaviour Checklist and the Strengths and Difficulties Questionnaire. The children's peers participated in a sociometric task, which aimed to act as a measure of their popularity among their classmates. A comparison of the findings of the psychometrics and the sociometric with the interview data revealed that the measures of social functioning do not adequately assess social inclusion in children following ABI. Subsequently, recommendations about the formulation of a new measure of social inclusion for children with ABI are made.

Significant proportions of carers for those with a brain injury have been found to be clinically anxious and depressed. Subjective carer burden (SCB) has been defined as the distress experienced as a result of the observed changes in the person with the brain injury. No research has looked at the individual psychological characteristics, or intrapersonal aspects, of the carer in brain injury in relation to SCB and psychological distress. Very few studies have addressed apparent methodological problems regarding the measurement of SCB; no study in brain injury has explored the meanings carers have found in their role; and very few studies have included positive elements of caring in their research. This study used a non-experimental, non-randomised, cross-sectional design. A theoretically based measure of SCB was used, in combination with a Personal Construct Psychology methodology, to investigate the relationship between the intrapersonal aspects of carers and their relationship to SCB and psychological distress. Positive appraisals of caring and meanings the carers derived from their role were also investigated. Few predicted study hypotheses were supported. Results showed that a significant proportion of carers were anxious and or depressed and that the majority of carers were shown to have very tight construct systems reflective of having limited flexibility in thinking. Novel findings included the previously unreported relationship between perceived burden, a measure of SCB, and anxiety. The manner in which carers construed the brain injured person was found to be related to the appraisals they form, thus adding to the evidence of the importance of the role of construing of the brain injured person by family members. Meanings derived from caring emerged in a number of themes. 60% of carers' meanings could be categorised in the following three themes: life circumstances, emotional states and health and illness. Carers generated positive as well as negative meanings. Findings were considered in relation to previous SCB and Personal Construct Psychology research. Clinical implications of the structure of construct systems in this population were considered. Suggestions for future research with an emphasis on the development of clinical practice were included.

This PhD thesis explores issues around acquired brain injury, focusing particularly on changing relationships between patients and carers and the trajectories they follow from the point of injury or diagnosis as a reconstructed life unfolds. Patients are identified as having strategies of adaptation and carers as taking on levels of agency, both of which shift according to time, context and other complex interactions. Each impacts on the other to produce an internal dynamic, the functionality of which is explored. Issues of care delivery are also raised, including the effects of mismatched expectations and of sharing or restricting information. This research is qualitative and based on the principles of grounded theory. 62 interviews were conducted involving 82 people (52 patients and 30 carers) and additional evidence was gathered from professional records, media reports and personal diaries. Themes were developed that can be linked together to form a trajectory of care, inside of which there is a finely balanced ecology. It is proposed that this trajectory although developed around data from people with brain injury is also applicable to other chronic conditions.