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Living with Acquired Brain Injury

Brandon University Health Studies Research Spotlight

Families’ Experiences Living with Acquired Brain Injury:  A Narrative Inquiry Study

 

Brandon University Health Studies faculty often partner with Prairie Mountain Health as an organization or with staff to make research happen. The goal is to improve the health of the community.

IT can happen in a split second – a motor vehicle injury, a fall, an assault, a sports injury, stroke, aneurysm, infection of the brain, or a tumour. Your loved one is rushed to the hospital - the diagnosis is acquired brain injury (ABI). While ABIs occur in individuals, families’ lives are dramatically affected by ABIs. Individuals with an ABI can experience a range of cognitive, behavioural and emotional impairments, often not visible, that may cause significant disruptions and changes. These post ABI changes can directly impact individuals’ and families’ experiences and include an overwhelming sense of loss.

The purpose of this research study was to examine families’ experiences living with ABI. The research question was: How do families make sense of their experiences living with ABI?

In a western Canadian province, six family units which included the person with the brain injury and family members were interviewed together. During the interviews, families were asked to talk about their lives before the acquired brain injury event, now living with the brain injury and then their thoughts about their futures. Participants were all over the age of 18. The severity of brain injury ranged from moderate to severe. Families were diverse in their make up; from dual and single parent families to a mixture of step and blended families. The stories the families told fit into the following themes.

Recovery Journey

The recovery journey focuses on the trauma of the ABI and the continuing impact. This theme is also about the families’ experiences with the health care system. In the immediacy of the health crisis they experienced support, however, leaving the hospital often meant they were on their own. Families experienced a health system that provided patient focused episodic care.

Individual and Family Loss

Individual and family losses is about the multiple loss experiences. The person with the ABI experienced loss of: identity, memory, quality functioning, quality of health and independence. Families experienced the ongoing loss of the person they once knew or the loss of the person who could have been. Families also experienced financial and social loss. The emotional impact of these losses included: stress, grief, depression, shame and embarrassment.

For these families’ huge amounts of energy went towards the shifting and adaptation to different roles: from partner to caregiver, grandparent to parent and child to parent. However, families were transformed in their abilities to positively cope and grow through these challenges. Families exhibited acceptance, understanding and empathy for changes demonstrated by their loved ones. Families strove to educate themselves, heal themselves, and became closer and more connected to each other. Family beliefs changed to viewing the ABI event as a blessing and a stronger value in family.

A Patchwork Future

The theme a patchwork future depicts the families’ ambiguity about their future: positive yet uncertain. As families continue to think about the future (i.e. retirements, marriages, grandchildren), and while there is hope for continued recovery there is a cautiousness, worry, uncertainty and fear of either regression or the return of another ABI event.

Implications

These families’ stories tell us that the impact of the ABI event on their loved one and family has been significant and is ongoing. Family supports they experienced from the health care system are missing from their stories. It appears that minimal supports exist for families and that health care professionals need to acknowledge and attend to the entire family system and not just the individual and primary care giver. The first step is for health care professionals to purposefully ‘think family’ and then adopt intentional actions to assist individuals and their family units throughout the stages of recovery.

Jane Karpa is an Assistant Professor and the Masters in Psychiatric Nursing Coordinator in the Department of Psychiatric Nursing at Brandon University, located at the Winnipeg site. She is currently completing her PhD with the University of Manitoba. Her PhD. Advisory Committee Chair is Dr. Wanda Chernomas, RN, PhD, and her PhD. Advisory Committee members are Dr. Kerstin Roger PhD, and Dr. Tuula Heinonen PhD.