An odyssey: families' experiences living with acquired brain injury

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Date
2019
Authors
Karpa, Jane
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Abstract
Notoriously known as the ‘silent epidemic’, Acquired Brain Injury (ABI) has reached worldwide epidemic proportions. While ABIs are manifested in individuals, families’ lives are dramatically affected by ABIs. These post ABI changes can directly impact individuals’ and families’ experiences and include a sense of loss. To date, the majority of evidence on how ABI affects families has been provided by examining individual family members who present their views of the “family perspective”. The science on ABI and families is limited in examining the family group perspective of their experiences living with ABI. The purpose of this research study was to examine families’ experiences living with ABI. This narrative inquiry study, informed by the life-stage approach of Lieblich, Tuval-Mashiach and Zilber, and the narrative analysis model by Riessman, and guided by ambiguous loss theory, used a research approach that included both the affected individual family member and the family together as a family group. Transactional data were collected through individual family group face-to face interviews with six different families. Data were also collected through ethnographic methods. Data analysis included an in-depth within case analysis and an across case analysis to identify themes that reflected families’ experiences living with ABI. Centered on the life stages of before the ABI event, now living with the ABI, and the future, thematic findings included: Families, a grounding force; Losses, individual and family; Family adaptive capacities; Experiences with the health care system-hospital to home; and A patchwork future-entering the unknown. The thematic findings from this study affirmed the significant impacts of ABI on individual and family members and acknowledged ABI as an ambiguous loss event. However, the findings also illuminated families’ strengths and resiliencies in coping with living with ABI. The study findings suggest minimal supports exist for families impacted by ABI and health care professionals need to acknowledge and attend to the entire family system and not just the individual and primary care giver. The study results suggest by THINKING FAMILY health care professionals can contribute towards a health care model that focuses on ‘family’ as the central unit of care.
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Keywords
acquired brain injury, family research, families, experiences, ambiguous loss, health care
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