Are Caregivers of Stroke Survivors Well?

PURPOSE: The wellness of stroke survivor caregivers often decreases over time (Kokorelias et al 2020). Demands of caregiving can negatively impact the caregiver’s relationships, participation in work and community activities, self-care, and physical health. (Caro, et 2018). Because the well-being of the survivor often depends on the wellness of the caregiver (Cheng et al 2018), there is a need for stroke rehabilitation occupational therapists (OTs) to focus on both the survivor and caregiver. It is important to seek input from caregivers to guide these efforts. The purpose of this project was to gather data to inform a future caregiver educational workshop and/or peer support group.

DESIGN: This Quality Improvement project involved a Needs Assessment which was conducted via a virtual anonymous survey (RedCap). A link to the survey was posted on a moderated Facebook stroke caregiver support group for 2 weeks and was available to group members who self-identified as a caregiver of a stroke survivor.

METHOD: The survey contained 7 closed-ended questions and 2 open-ended, free-text questions. The closed-ended questions collected information on participants’ relationship to the survivor. The close-ended questions had the caregiver use a 5-point Likert scale (Strongly Agree, Agree, Neutral, Disagree, and Strongly Disagree) to score their perceptions of self-care, life balance, confidence, skills, anxiety, and physical complaints. The open-ended questions probed the caregivers for more depth on specific difficulties and educational needs. Quantitative data were tabulated and the frequency of participant responses to Likert Scale categories was reported. Qualitative data were informally analyzed for recurring themes.

RESULTS: Sixty caregivers responded, with 97% fully completing the survey. Respondents were spouses (46%), daughters (30%), parent (12%), other family member (7%), friend (3%), and paid caretaker (2%). Participants strongly agreed/agreed to having confidence in their overall abilities to assist the survivor (68%) and perform specific skills (e.g., transfers, 63%). However, participants also strongly agreed/agreed with experiencing anxiety (88%), a sense of being overwhelmed (78%), limited time taken for self-care (68%), challenges to life balance (88%), and physical complaints (e.g., pain, 70%). Qualitative data revealed recurrent themes of anxiety, stress, depression, “care for the caregiver,” and a need for resources.

CONCLUSION: This survey indicates that there is a dire need for resources, support, and care for the caregivers of stroke survivors. If stroke rehabilitation OTs seek to improve stroke survivors’ quality of life, the caregiver must also be a deliberate focus of OT practice. A focus on the caregiver could improve stroke recovery by comprehensively addressing the wellness of both the survivor and caregiver.

References

Kokorelias, K. M., Lu, F., Santos, J. R., Xu, Y., Leung, R., & Cameron, J. I. (2020). ‘Caregiving is a full-time job’ impacting stroke caregivers’ health and well-being: A qualitative meta-synthesis. Health & social care in the community, 28(2), 325–340. https://doi.org/10.1111/hsc.12895

Caro, C. C., Costa, J. D., & Da Cruz, D. (2018). Burden and Quality of Life of Family Caregivers of Stroke Patients. Occupational therapy in health care, 32(2), 154–171. https://doi.org/10.1080/07380577.2018.1449046

Cheng, H. Y., Chair, S. Y., & Chau, J. P.-C. (2014). The effectiveness of psychosocial interventions for stroke family caregivers and stroke survivors: A systematic review and meta-analysis. Patient education and counseling, 95(1), 30–44. Ireland: Elsevier Ireland Ltd.