Problems and Benefits Reported by Stroke Family Caregivers

Abstract

Background and Purpose-Stroke symptoms can be very stressful for family caregivers, but most knowledge about the prevalence and stressfulness of stroke-related patient problems is derived from convenience samples. In addition, little is known about perceived benefits of the stroke caregiving experience. The purpose of this study was to determine the prevalence and stressfulness of stroke-related problems, and perceived benefits of caregiving, as reported by an epidemiologically derived sample of caregivers of stroke survivors. Methods-Stroke survivors (Nϭ75) from a prospective epidemiological study of stroke, the REasons for Geographic and Racial Differences in Stroke (REGARDS) study, and their family caregivers were followed. Caregivers were given a comprehensive telephone interview 8 to 12 months after the stroke, using measures of stroke patient problems, caregiver appraisals of the stressfulness of these problems, and perceived benefits of caregiving. Results-Caregivers rated patient problems with mood (depression, loneliness and anxiety), memory, and physical care (bowel control), as the most stressful, but reported prevalence of these problems was lower than those reported previously in studies using clinical samples. Caregivers also reported many benefits from caregiving, with over 90% reporting that caregiving enabled them to appreciate life more. Conclusions-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. 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.

Long-term impact of stroke on family caregiver well-being

“…Once stroke survivors are identified by REGARDS they are recruited, along with a primary family caregiver, to participate in the ancillary Caring for Adults Recovering from the Effects of Stroke (CARES) project. [7][8][9][10] The present analyses are based on 235 family caregivers of REGARDS stroke survivors and a matched control sample of 235 noncaregivers who were also recruited through the RE-GARDS project. After the CARES project was initiated in 2005, REGARDS participants who reported a stroke event were potentially eligible to participate.…”

Does Caregiver Well-Being Predict Stroke Survivor Depressive Symptoms? A Mediation Analysis

“…The coefficient alpha for this scale is 0.92. 7 Caregiver depressive symptoms-Caregiver depressive symptoms were assessed with the Center for Epidemiologic Studies Depression Scale (CES-D), 15 a 20-item Likert-type scale. The CES-D has been used in numerous studies, 6,14 supporting adequate psychometric properties ( = 0.89, in our sample).…”

“…The CARES project is an epidemiologically based study that comprises Caucasians and African Americans. 7,13,14 Participants were recruited between 2005 and 2010 and consisted of 146 communitydwelling residents who were stroke survivors from the REGARDS project who also participated in the CARES project and who met the following criteria: (1) were 45 years of age or older; (2) had medical records for a stroke event; (3) were community-dwelling residents an average of 9 months after the stroke event; and (4) designated a family member or close friend who was serving as an informal caregiver or had served previously in this capacity after the stroke event. Potential participants were excluded if reported strokes could not be confirmed by medical records or were adjudicated as transient ischemic attacks or other nonstroke medical problems or if they were residents of nursing homes or other residential care facilities.…”

“…5 Stroke survivor impairments and problems affect many aspects of daily living for caregivers, but data also suggest that caregivers who have a positive well-being, including few depressive feelings 6 and higher life satisfaction, 7 may be better emotionally equipped to handle the stresses of caregiving 5 and potentially reduce stroke survivor depressive symptoms. 8 Although stroke survivor impairments and problems, caregiver depressive symptoms and life satisfaction, and survivor depressive symptoms appear to be related, the direction of these relationships remains unclear.…”

The everyday life of adult family members of working aged survivors of stroke during the first year after the stroke – an integrative review

“…Family members realized at some point that the continuation of life for the whole family was important. They also gained strength when caring for the loved one as they felt the value of life enjoyed the feeling of being needed, strived for a positive attitude on life, and learned new skills [23,33,52] . It was demanding to adapt to life as a caregiver, including giving physical help to the loved one and adapting to a new role regarding making decisions inside of the family.…”