Community Caring for a Family Member With Brain Injury: Women’s Lived Experiences

Abstract

Individuals with a brain injury often require a caregiver to live safely in a community-based setting. This role typically defaults to a woman family member. Under the auspices of a constructivist interpretive tradition that honors a desire-based approach, this study blended narrative inquiry and grounded theory to explore the lived experiences of women caring for loved ones with brain injury. Twenty women completed the semi-structured interview, electing to participate either via videoconferencing or telephone. Employing a constant comparative method, three consecutive rounds of interviews, coding, and analysis occurred. Findings revealed an overarching theme surrounding the intractable challenges and enduring triumphs of caregiving. This discovery further sub-divided into four themes. Two themes focused on traversing a fragmented system of care and managing the burden of caregiving. The remaining two entailed finding supports in family and friends and leveraging professional skillset(s) to optimize caregiving. The recommendations garnered from the women’s experiences included enhanced caregiver education with follow-up post-medical care, expanding services into the community to support caregivers and their family members appropriately, and building compassionate networks of women living the caregiving experience. Consistent with a desire-based paradigm, leveraging relationships to triumph over the challenges provided this group of women a voice to promote effective care for self, loved ones, and others.