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Emotional and Physical Health of Informal Caregivers of Residents at the End of Life: The Role of Social Support

¹ Department of Allied Health Sciences, Division of Speech and Hearing Sciences; Center on Aging and Diversity, University of North Carolina at Chapel Hill.
² Cecil G. Sheps Center for Health Services Research and the School of Public Health, University of North Carolina at Chapel Hill.
³ Cecil G. Sheps Center for Health Services Research and the School of Social Work, University of North Carolina at Chapel Hill.
⁴ College of Social Work, Florida State University, Tallahassee.
⁵ School of Aging Studies, University of South Florida, Tampa.
⁶ Cecil G. Sheps Center for Health Services Research and the Department of Family Medicine, University of North Carolina at Chapel Hill.

Address correspondence to Sharon W. Williams, Department of Allied Health Sciences, Division of Speech and Hearing Sciences, Bondurant Hall, CB 7190, University of North Carolina at Chapel Hill, Chapel Hill, NC 27599. E-mail: Sharon_Williams{at}unc.edu

Objectives. The objectives of this study were to examine the relationship between selected decedent and caregiver characteristics, facility-related perceptions, and emotional and physical health of 434 informal caregivers (94% family) of recently deceased residents of residential care/assisted living facilities and nursing homes. We also examined potential mediating effects of social support (informal, staff, and spiritual).

Methods. We analyzed data using linear mixed models.

Results. Among caregivers, younger age, female gender, more education, financial burden, other dependents, poorer perceptions of care, and more care involvement were associated with more emotional strain. More staff support also was associated with more emotional strain and partially mediated the relationship between having a trusted staff member and emotional strain. Characteristics associated with poorer physical health included unemployment, financial burden, poorer physician communication, and trusted staff member. Informal social support was directly related to better physical health and mediated the relationships between physical health and both physician communication and financial burden.

Discussion. Many characteristics related to end-of-life caregiving outcomes in long-term care are consistent with community-based studies, suggesting that end-of-life caregiving outcomes in long-term care are not markedly different than in other settings. However, the role of staff support may either facilitate or complicate emotional strain and merits additional study.

Key Words: End of life • Long-term care facilities • Social support • Emotional and physical health

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