Adults with acquired traumatic brain injury – the changeover process and consequences in every day life : a study of fifteen persons' experience of living with acquired traumatic brain injury

The overall purpose of this study is to illuminate the changeover process experienced by individuals who as adults acquired a traumatic brain injury (TBI), to increase the knowledge and the understanding of this process, and describe the meaning of support in every day life. Persons who acquired a TBI as adults were administered a semi-structured interview covering six areas: consequences of TBI, family and social networks, working life and occupation, life-changes, support from society and everyday life. The interviews were qualitative and in-depth. A total of 15 informants participated, aged between 19-53 years when injured. Data were structured and underwent two phases of analysis. In the first phase, data underwent latent content analysis, underpinned by a hermeneutic approach, and in the subsequent phase, reanalysed within a framework derived from the theory of social recognition. Findings from the first phase of inductive analysis elicited key themes: (i) the meaning of care, a question of formal and/or informal support; (ii) the meaning of action, a question of activity versus inactivity; (iii) autonomy, a question of dependence versus independence; (iv) social interaction, a question of encounter and/or treatment; (v) the theme of changes, a question of process versus stagnation; and (vi) emotions, an oscillation between hope versus hopelessness. After the construction of the six themes each of them were, through a discursive analysis, connected with theories, earlier studies in the field of brain injuries and important interview quotations from the empirical material. During this phase, an interest developed to study the material from a new theoretical point of view. The second phase of analysis therefore involved the development of a framework derived from Honneth’s (1995) theory of social recognition. The central construct of ‘recognition’ was analysed from three different dimensions proposed by Honneth: the individual dimension, the legal dimension, the value dimension. Using this framework, the data were reanalysed. The scientific term for this process of re-contextualisation and re-description of data is abduction inference. Reported consequences were negative as well as positive. Significant others (e.g. next of kin) had an important function as a driving force for training and preparation for life-situation after injury. A majority of the informants were satisfied with support from society, such as hospital-care, rehabilitation and community support. Such support, initially, proceeded without problems but as time passed, the responsibility shifted to the person with TBI to take the initiative in arranging longer-term services. Long-term support which addresses physical, cognitive as well as psychosocial consequences of the TBI is important for outcomes. The majority of the informants had difficulties in returning to working life after the injury. The outcomes and recovery seemed to be a prolonged process, probably never ending, but which gradually over time becomes integrated as a part of life. The informants gave varying accounts of the extent to which they experienced social recognition