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J Gerontol B Psychol Sci Soc Sci. 2012 Sep;67(5):595-604. doi: 10.1093/geronb/gbs065. Epub 2012 Aug 28.

Family caregiver involvement for long-term care residents at the end of life.

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  • 1Department of Allied Health Sciences, Division of Speech and Hearing Sciences, University of North Carolina at Chapel Hill, Bondurant Hall, CB 7190, Chapel Hill, NC 27599, USA.



To examine family caregiver involvement for long-term care (LTC) residents during the last month of life. Researchers examined direct (personal care and meals) and indirect (management and monitoring) types of caregiver involvement and the relationship between the type of involvement and predisposing, enabling, and need characteristics. Researchers also examined whether the frequency of involvement changed during the end-of-life (EOL) period.


Researchers used an expanded version of Andersen's Behavioral Model to conceptualize predictors of family involvement for 438 residents in 125 residential care/assisted living and nursing home settings. Bivariate and multivariate analyses examined relationships among variables.


More than one-half of family caregivers monitored, managed care and assisted with meals, and 40% assisted with personal care tasks. The enabling characteristic of days visited and the need characteristic of caregiver role strain were related to each of the 4 types of involvement. However, the other correlates were distinct to the type of involvement.


Families are involved in EOL care in LTC settings. Higher role strain is related to more involvement in each of the 4 types of involvement, suggesting that whether involvement is by desire, perceived need, or both, there is cause to more critically examine the family caregiver's desired role and need for support.

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