While caring for stroke survivors can be highly stressful for some families, many families feel little or no strain from caregiving, and even report that being a caregiver can be personally rewarding, according to research published in Stroke: Journal of the American Heart Association.
In a study of 75 stroke caregivers:
- 90 percent reported that caregiving enabled them to appreciate life more;
- 44 percent reported “no strain;” and
- 41 percent reported “some strain.” Furthermore, average depression scores were well below depressive symptom levels typically reported in similar studies recruited from clinical settings, researchers said.
The findings came from a population-based study of the stroke care experience that the authors said includes caregivers who may be coping well and who may not seek out professional assistance.
“Epidemiologically based studies of stroke caregiving provide a unique picture of caregiver strains and benefits compared with clinical studies, which tend to over-represent more impaired patients,” said William E. Haley, Ph.D., lead author of the study and professor at the School of Aging Studies of the University of South Florida, Tampa.
Researchers studied 75 people caring for stroke survivors enrolled in the Reasons for Geographic and Racial Differences in Stroke (REGARDS) study, an epidemiologic investigation of stroke incidence and mortality including a large, racially diverse national sample of adults over age 45. They gathered caregiver reports of the prevalence and stressfulness of patient impairments through an ancillary project, the Caring for Adults Recovering from the Effects of Stroke (CARES) study. Both REGARDS and CARES are based at the University of Alabama at Birmingham.
Among the caregivers in the study:
- The average age was 64; 79 percent were female and 21 percent male.
- Fifty-six percent were white and 44 percent African American.
- About half (53 percent) were spouses of the survivor, while 31 percent were the survivor’s child and 16 percent were another relation.
- They provided an average of 36.9 hours of care per week.
Among the patients, 85 percent had suffered ischemic strokes (caused by blocked arteries) and 15 percent had survived hemorrhagic strokes (caused by bleeding in the brain).
For the study, the caregivers completed a comprehensive telephone interview eight to 12 months after the strokes and researchers measured caregiver appraisals of the stressfulness of patient problems and perceived benefits of caregiving.
While 82 percent of caregivers reported their stroke patient having at least one problem, no individual problem was cited by 50 percent or more of caregivers. Caregivers rated patients’ problems with mood (depression, loneliness and anxiety), memory, and physical care (dressing and bowel control) as their most stressful issues. But the reported prevalence of these formidable problems “was lower than those reported previously in studies using clinical samples,” Haley said.
Care providers also reported an average of nine benefits from their efforts including increasing their appreciation of life, “feeling needed” and “developing a more positive attitude toward life.”
Most research on problems faced by stroke caregivers comes from patients selectively recruited through clinical settings, Haley said.
“These patient samples and their caregivers likely have greater impairment and distress than those not seeking care and include very few ethnic minority participants, even though African Americans have higher rates of stroke than whites.” In addition, Haley said that “the results show that, even in the face of challenging caregiving roles, many families are resilient and find personal benefit and meaning from providing assistance to a loved one.”
This is the first epidemiologically based study to identify the most common stroke-related problems reported by caregivers. The study’s limitations include its relatively small sample size and lack of representation from other minority groups.
“Support for caregivers should include interventions to aid their coping with highly stressful mood, physical care and cognitive problems of stroke patients, but should also attend to perceived benefits of caregiving,” Haley said.
Co-authors are Jessica Y. Allen, B.A.; Joan S. Grant, D.S.N.; Olivio J. Clay, Ph.D.; Martinique Perkins, M.A.; and David Roth, Ph.D.
The National Institute of Neurological Disorders and Stroke funded the study.
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