Family caregiving: Effects of activity participation on well-being and burden

Stroke is a leading cause of long term disability. Many survivors return home with help from family, helping to control health and social service expenditures. This savings may extract a toll. New, unfamiliar, and unpredictable caregiving responsibilities require time and energy. Caregivers may enjoy tremendous fulfillment, yet the demands can disrupt other valued activities and undermine caregivers' health. Several studies show physical and psychological problems related to lifestyle changes for caregivers. Although nearly one third of people who have strokes are age 65 or under, there is little understanding about the effects of caregiving on their younger spousal/partner caregivers. This pilot study is based on Pearlin's stress process model of caregiving with a focus on secondary strains from activity limitation and constricted social life. It explores the empirical relationship of activity restriction to well-being and strain among family caregivers for partners or spouses who have survived strokes. Change in activity participation is correlated with with burden as measured by the Zarit Burden Interview and with health and well-being from SF-36. Findings can help to develop caregiver services, educate health professionals, and guide policy.