Occupational gaps after acquired brain injury : An exploration of participation in everyday occupations and the relation to life satisfaction

Sammanfattning: Participation in everyday occupations and life satisfaction is often reduced after acquiring a brain injury. The everyday life situation is altered and life satisfaction is also decreased for persons who are close to those who have acquired a brain injury, for instance partners. The overall aim of this dissertation was to explore and identify what people do and want to do in everyday life over time after acquiring a brain injury, with focus on their perceptions of gaps in their everyday occupations and the relation to their perceived functioning and life satisfaction. The joint life satisfaction among couples, where one person has had an acquired brain injury, and the relation to their perceived functioning and participation in everyday occupations were also explored. Furthermore, the aim was to initiate the development of methodology capturing the perceived occupational gaps, and to understand how occupational gaps were characterised in the lived experiences of performing everyday occupations. This dissertation comprises four studies that focus on the participants perceptions of everyday occupations. The joint life satisfaction among 55 couples and the influence the perceived functioning and disability had on their life satisfaction was explored (Study I). The concept of occupational gaps was identified; an occupational gap is defined as the gap that occurs between what an individual wants and needs to do and what he or she actually does. The Occupational Gaps Questionnaire was developed, which is considered to measure to what extent an individual does/does not what he or she wants to/wants not to do. Perceived occupational gaps before and after injury and the relation to impairments and time lapse since injury were explored among 187 participants who had acquired their brain injury 1-4 years earlier (Study II). The relation between perceived occupational gaps and life satisfaction in a subsample (n=116) of the previous study sample was also explored (Study III). Finally, the phenomenon of occupational gaps was explored by identifying how the occupational gaps were characterised in the participants (n=4) lived experiences of performing everyday occupations the first year after stroke (Study IV). The findings showed that the majority of the couples in which one person had acquired a brain injury perceived a low joint life satisfaction that was mainly influenced by their restricted participation in everyday occupations. The studies of occupational gaps showed that the participants that perceived occupational gaps increased by 25% after acquiring a brain injury, and the extent of perceived occupational gaps was mostly related to the participants perceived executive and motor impairments. In addition, the time that had elapsed since injury, i.e. whether one year or four years had passed since onset, had no effect on the extent of gaps. Furthermore, the extent of occupational gaps was shown to have a definite relation to life satisfaction, where low extent of occupational gaps related significantly to a high life satisfaction. The phenomenological study identified five main characteristics that described participants experiences in their everyday doings. They strove to narrow gaps in symbolic occupations; experienced themselves as being the persons they were before or modified their sense of self through doing; encountered occupational gaps in former taken-for-granted activities; created strategies enabling doing; and had a sense of being competent despite the disruption. In conclusion, participation in everyday occupations is often restricted in the long term for persons who live with an acquired brain injury as well as for their partners. Consequently, access to client-centred and occupation-based rehabilitation interventions, even in the long-term, is required for clients with acquired brain injuries and persons close to them who have unmet needs. Life satisfaction had a definite relationship with participation in everyday occupations (Study I) and perceived occupational gaps (Study III), which implies that by enabling persons or couples to do what they want to do in everyday life their satisfaction with life might be enhanced.