Experiences of Caregiving, Satisfaction of Life, and Social Repercussions Among Family Caregivers, Two Years Post-Stroke

Abstract

Cerebrovascular diseases are a public health and social policy priority in Europe due to their high prevalence and the long-term disability they may result in (as the principal cause of handicap). Increasingly, family caregivers take over the care at home of these patients. Two years post-stroke, our study analyzed the feelings of family caregivers from Luxembourg and northeastern Portugal toward their experience of caregiving and its repercussions on social and couple relationships, life satisfaction, and socioeconomic characteristics. Participating hospitals identified survivors and consent was sought by letter. Patients (n = 62) and their main caregivers (n = 46 pairs) were interviewed at home. The mean life satisfaction of caregivers was similar, but the experience of providing care differed in terms of family support, and disruptions of the caregivers' family responsibilities. More Portuguese respondents gave activities up, found little time for relaxation, and estimated that their health had deteriorated; more Luxembourgers felt strong enough to cope. More Portuguese spouses reported an impact on their sex lives. Family caregivers represent a “population at risk.” Social workers can help them by providing domestic assistance, undertaking coaching activities, fostering favorable attitudes, and offering reassurance. Home-based rehabilitation in Europe involving family care must take account of cultural lifestyle issues.

Keywords:

• experiences of caregiving
• family caregiver
• care provision setting

Acknowledgments

Thanks to Etienne Le Bihan (University of Luxembourg, Research Unit INSIDE) who conducted the statistical analyses and Marie-José Gomes (University of Minho, Department of Sociology, Portugal) who organized the survey in the North-eastern of Portugal. The project “Living in the Grand-Duchy of Luxembourg after a stroke: family repercussions and quality of life. Equality of access to healthcare and social resources” was financed by the National Fund for Research, Luxembourg FNR/VIVRE 06/06/06, the University of Luxembourg, and the Research Centre for Health.