Spousal Caregivers: Caregiving in Their Own Words

157 p.Thesis (Ph.D.)--University of Illinois at Urbana-Champaign, 2006.This qualitative study included interviews with six spousal caregivers in one community to examine the narratives produced by spouses actively caring for their partners with dementia. The spousal caregivers were interviewed multiple times over approximately 12 months. Their narratives were analyzed using a phenomenological approach that allowed development of descriptions of identity, social support, coping with uncertainty, and sharing their stories with a specialized audience. The study also incorporated the researcher's knowledge of the social service community from 15 years of social work experience, a survey given to caregivers receiving services from the county health department, and statistical information from national and local resources. Caregiver identity, evaluation of social support, the duality of uncertainty in illness, and the significance of the audience were described. The participants identified themselves primarily as spouses as opposed to being a caregiver. The support provided to their spouses was described in terms of the responsibility and reciprocity of marriage. Participants clearly communicated reasons for satisfaction or dissatisfaction with both formal and informal social support. The caregivers provided nuanced evaluations of social support and effective strategies to maximize its usefulness. The caregivers experienced uncertainty when acting as a patient advocate and surrogate decision maker. Spousal caregivers were aware of these dual roles in supporting their spouses who suffered from diminished cognitive capacity. Uncertainty also was produced by their own health and well-being, because it determined their ability to continue providing care. The participants were familiar with the researcher's previous social work positions and all the caregivers were receiving services from the county health department for which the researcher had previously worked as a caregiver counselor. Spousal caregivers reported benefits in relating their stories to an audience that understood caregiving. Implications for communication of caregiver identity, social support, and uncertainty are discussed in terms of current knowledge. The importance of listening to caregiver narratives as a part of social support services is advocated. Counselors should be aware of caregiver uncertainty and reasons for accepting social support when providing education, services, and emotional support.U of I OnlyRestricted to the U of I community idenfinitely during batch ingest of legacy ETD