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Dr. Kniepmann is Instructor in Occupational Therapy and Neurology, Washington University School of Medicine, St. Louis, Missouri.
The author has no financial or proprietary interest in the materials presented herein.
Stroke is a leading cause of disability worldwide, and even with mild stroke, most survivors face difficulties with community reintegration and social participation (Tellier, Rochette, & Lefebvre, 2011; Wolf, Baum, & Connor, 2009). These difficulties impact families in a variety of ways (Palmer & Glass, 2003).
The majority of people with stroke return home where relatives provide guidance and support (Palmer & Glass, 2003; Tellier et al., 2011). Stroke effects extend far beyond the diagnosed individuals to change lifestyles and challenge the health of primary caregivers. While caregiving can provide a sense of reward and accomplishment, many relatives also report difficulties (Greenwood, Mackenzie, Cloud, & Wilson, 2009; Kinney & Stephens, 1989; Palmer & Glass, 2003). Most research about caregivers of people with stroke has been about older adults, but a large and growing proportion of survivors are working age (Wolf et al., 2009). Family caregivers for these younger people face challenges that may disrupt life trajectories with detrimental effects on social participation and health. Much less is known about this population.
Little or no preparation is provided for family caregivers of people with stroke, as they are confronted with many new responsibilities and altered routines (Coombs, 2007; Perry & Middleton, 2011; Tooth, McKenna, Barnett, Prescott, & Murphy, 2005). In one study, over half of family caregivers reported spending 40 or more hours weekly to help relatives with stroke (Perry & Middleton, 2011). Another study found that, besides personal assistance, spouses often performed household activities that were previously done by the person with stroke (Coombs, 2007).
Demands of caregiving can limit caregivers' time for themselves and restrict participation in other activities, particularly leisure (Cao et al., 2010; Forsberg-Wärleby, Möller, & Blomstrand, 2004; Rudman, Hebert, & Reid, 2006). Caregivers whose spouses with stroke used wheelchairs reported experiencing a "restricted occupational world;" they were reluctant to do things without their spouses even if it meant dropping enjoyable, valued activities (Rudman et al., 2006, p. 141). Another study found that wives focused on therapeutic needs of their husbands with stroke and reduced their own high-demand leisure or fitness activities...