Grief and Loss Associated With Stroke Recovery: A Qualitative Study of Stroke Survivors and Their Spousal Caregivers

Abstract

Despite a focus on physical and cognitive outcomes, stroke survivors are also impacted by emotional and mental health challenges. Additionally, their caregivers may experience decreased well-being due to increased burden and role adjustment. A small body of literature characterizes this experience as a form of grief and loss. This study seeks to explore experiences of grief and loss reported by stroke survivors and caregivers, using Holbrook’s 4-stage bereavement model. This cross-sectional, qualitative study was conducted among adult stroke survivors (n = 9) and their spousal caregivers (n = 5). Focus groups on experiences of recent hospitalizations and transitions home were transcribed, coded, and thematic analysis was conducted, identifying a major theme of loss. Data were reanalyzed guided by Holbrook’s model. Common themes were losses and changes experienced by patients/caregivers, disbelief, and lack of understanding. Subthemes of denial and confusion were present. Less prevalent themes were loss of existing support systems and silver lining. Stroke survivors and caregivers experienced a range of negative emotions, impacting behaviors, self-perception, roles, and social support. Awareness of these issues can improve practice with those affected by stroke.