Friday, 14 January 2005 - 8:00 AM

This presentation is part of: End-of-Life Perspectives: Family and Elders

Nursing home family members' role expectations as the end of life draws near

PURPOSE: To build understanding of family members’ expectations of their responsibilities toward their loved one, the nursing home resident. The views held by family members are important because they can affect end-of-life decision making on behalf of nursing home residents, many of whom have cognitive impairment. They can also affect family member peace of mind. This research was funded by the John A. Hartford Foundation’s Geriatric Social Work Doctoral Fellowship and The Soros Foundation’s Project Death in America, Social Work Leadership Development Award.

METHODS: These findings are from a two-part qualitative study consisting of a secondary analysis of ethnographic data collected over 8 months at two Midwestern urban nursing homes, and new data collected to member check preliminary findings. The ethnographic data were collected under the direction of Dr. Sarah Forbes (NIH, NINR R15NR04974). The purpose of the Forbes’ study was to learn about quality of and satisfaction with end-of-life care. As part of the Forbes research team, I was given permission to use the data for a secondary analysis. The results reported in this presentation will consist of answers to this research aim: Describe the families’ sense of their own role responsibilities toward the nursing home resident.

Role theory was used as a lens to organize the data. Over 1,200 pages of notes were re-coded. All notes pertaining to family member comments or actions related to residents were grouped and then classified into types of family responsibilities.

RESULTS: There were 45 residents enrolled in the study, two-thirds were women, and one-third were African American. There were 44 family members. Two-thirds were women. Over 70% visited the resident at least twice per week. Three categories of responsibilities toward residents emerged: 1) Family members held themselves responsible for working to ensure access to basic care; 2) Family members wanted to explain the resident to the staff; and 3) Family members sought to demonstrate on-going commitment to family connection (sense of love and/or duty). In the process of addressing this research aim it became clear that while many families expressed relief that their loved one was in a nursing home, they also felt guilt. Some family members faced role strain from tending to their own health needs, caring for other family members, and employment. Many reported it was difficult to see their loved one in the current condition. Some families struggled with what they considered their role to be, especially as the end-of-life drew near.

IMPLICATIONS: Many family members want to continue as a resource to their loved one in a nursing home. Staff skill in incorporating family involvement can serve as an asset to the home and the resident, especially as the end of life approaches. Social workers are encouraged to look for ways in which to build on family strengths while including family in-put in care planning. Social workers can help identify and assist overwhelmed families with decision making, role expectations, and advocacy needs.

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