Caregiver Service Use: A Complex Story of Care at the End of Life

• Published in: Journal of social work in end-of-life & palliative care Vol. 4; no. 4; pp. 286 - 311
• Main Authors: Gustavson, Kristen, Dal Santo, Teresa S.
• Format: Journal Article
• Language: English
• Published: Taylor & Francis Group 01.01.2008
• Subjects: Bereavement; Caregiver Burden; caregiving; Coping; Death; impact of caregiving; Needs; Palliative Care; Psychological Distress; service use; Social Services Utilization; unmet needs
• ISSN: 1552-4256; 1552-4264
• DOI: 10.1080/15524250903081475

This study explored the impact of caregiving, service use, and unmet needs of caregivers of the dying and whether end-of-life caregiving differs from other types of caregiving. We hypothesized that end-of-life caregivers would have greater unmet needs before and after the death of their care recipient and that they would report lower levels of well-being than continuing caregivers. We looked specifically at the service use of caregivers whose care recipients died during the study period and whether or not such service use helped caregivers to manage end-of-life care. This study showed that, on average, end-of-life caregivers are older, more likely to be White, and provide care for individuals with greater Instrumental Activities of Daily Living (IADL) and Activities of Daily Living (ADL) needs and severe memory problems. In cross-sectional analyses, end-of-life caregivers experienced greater emotional stress, physical strain, and poorer health and used more supportive services than their caregiving counterparts. However, after controlling for other covariates in regression analyses, end of life care remained a predictor of only physical strain.