Living With a Severe Acquired Brain Injury as an Inpatient in a Neuro-Rehabilitation Unit: An Interpretative Phenomenological Analysis

Abstract

Background: Until recently, qualitative researchers have avoided interviewing participants with brain injuries because of the ethical and practical dilemmas which may arise and because it has been argued that they may not be able to reflect and accurately report upon their experiences. Therefore, little research has been produced which explores the personal experience of living with a brain injury. Recently, however, some researchers have challenged the view that people with brain injuries are unsuitable as interviewees in qualitative research and have, through their own research, highlighted the importance of understanding their views and perspectives in order to provide them with the best care and rehabilitation. Aims: With this in mind, and in line with current calls for more research gaining the brain injured person’s perspective, this study attempted to gain an in depth understanding of what it is like from the brain injured person’s perspective, to live with an acquired brain injury. The study focussed upon the experience of gaining consciousness following a brain injury, the experience of living with permanent memory loss, the experience of gaining awareness of deficits, the experience of losing an identity and adjusting to a new identity, the impact on relationships with friends and family and experiences as an inpatient in a Brain Injury Unit. Sources of strength and coping mechanisms were also explored. Method: Semi-structured interviews were conducted with six individuals who had severe acquired brain injuries and were inpatients in a post-acute neuro-rehabilitation unit. The verbatim transcripts of the semi-structured interviews were then analysed using Interpretative Phenomenological Analysis (IPA). Results: The analysis produced four master themes. These were: ‘Piecing together the past and becoming aware of the present’, ‘The transition from old self to new self’, ‘Sources of strength and survival’ and ‘Experiences in rehabilitation’. A description of these themes is presented with the corresponding subordinate themes. Conclusions: The clinical implications of the research and guidance for future research are discussed. The study produced a valuable insight into the personal experience of living with a severe acquired brain injury that could be used to inform rehabilitation interventions. The results also indicated that people with acquired brain injuries may experience Post Traumatic Growth.