Starting over: Grief and Loss Experienced By Stroke Survivors and Their Spousal Caregivers

Background and Purpose:  Stroke survivors and caregivers in the community struggle with post-stroke depression and anxiety.  Despite the awareness of an increased risk for mental health outcomes, negative emotional and social outcomes are, in many cases, overlooked in favor of recovery of physical functioning.  Some literature on stroke survivors compares the experience of loss of physical functioning to “a small death”.  The experiences of stroke families have been examined using a staged bereavement model; the first stage is crisis, the second is treatment, followed by realization of disability, and finally by acceptance.  The aim of this study was to explore the experiences of grief and loss reported by stroke survivors and their spousal caregivers, using the framework of the four stage bereavement model.

Methods: In this cross-sectional study, we utilized focus groups to collect data from stroke survivors and their family caregivers.  Participants were purposively sampled from acute inpatient stroke services at four hospitals.  Inclusion criteria: acute stroke requiring hospitalization in the previous three months, functional impairment, discharged to home, and able to communicate in English.  Thirteen stroke survivors and eight caregivers participated.  Survivors reported a range of functional difficulties and residual effects of stroke from moderate to severe.  Participants were asked to tell the story of their recent stroke experience and their current challenges.  The groups were recorded and transcribed verbatim.  Data were coded by two independent coders following thematic analysis with the assistance of Atlas.ti software.  Consistency in coding was checked throughout this iterative process, and transcripts were re-coded after discussions of agreement/disagreement.

Results:  Analysis of the data revealed five themes that correspond with the stages of the bereavement model.  The most common were loss and change for the patient and the caregiver.  For example: loss of physical ability, such as inability to use a hand, as well as loss of role such as no longer being able to manage the household finances.  For the couples in our sample the meanings that they ascribed to these losses were often affecting their relationships negatively.  Several couples talked about the difficulty of having to adjust to a new reality, essentially starting over.  It was evident that participants, particularly stroke survivors, were in denial about the full impact of stroke on their lives.  The overestimation of ability often coincided with an increase in the stress and strain experienced by their caregivers, as they had to take on the role of “holding the patient back”.  Participants also discussed loss of social support; after the stroke their friends, and in some cases, families withdrew and did not offer support or assistance.  Very few of our participants exhibited signs of acceptance; when present it tended to be among caregivers, rather than patients.

Conclusions and Implications:  Using a bereavement framework may help patients and families understand their reactions to acute stroke.  Beyond physical loss stroke survivors and caregivers experience social and emotional losses as well.  There is a clear role for social work involvement in helping to move families affected by stroke toward acceptance.