June 2012

Document Type


Degree Name



Oregon Health & Science University


RATIONALE: Assisted Living (AL) is a rapidly growing housing option. Increasingly, residents are staying in AL facilities until death. The best way to provide end-of-life care in this congregate living environment is unclear. Family involvement can be key to residents’ ability to stay in their AL home, but research regarding the family caregiver's role and activities is limited. Understanding the challenges and needs of these family caregivers can provide insight into how to best support them and by extension improve the quality of death for the family members residing in assisted living. PURPOSE: The purpose of this study was to describe the experiences of family caregivers providing care to their family members living in assisted living and approaching death. METHOD: An exploratory, descriptive, qualitative design was used. Ten participants, family members of seven AL residents, took part in this study, which utilized semi-structured interviews and participant observation for a total of 13 interviews and 14 observations. Data analysis involved: 1) transcribing interviews; 2) reading transcripts; 3) coding salient data; 4) identifying themes and categories; 5) creating a model. RESULTS: An overarching goal was found to be a framing and motivating force for the family caregivers' efforts. The family caregivers' overarching goal was to maintain the AL placement until the care recipient's death. In order to achieve that goal, family caregivers engaged in a continuous process of monitoring the care recipient's needs and how well those needs were being met through a combination of AL, hospice, and, to a lesser degree, family involvement in care. The family caregivers responded to any unmet needs of the care recipient by either managing the care provided by others, or by supplementing the care with direct care activities themselves. The intensity of involvement in care was mediated by the competing demands on the family caregiver and on the quality of his/her relationship with the care recipient. As the care recipient's needs changed over time, the family caregiver's involvement in care also changed, either increasing or decreasing in intensity, depending on their appraisal of the care recipient's changing needs. IMPLICATIONS: Because much of family caregiver response is based on overarching goals and perceptions, it is important that communication be ongoing between the family and professional caregivers regarding the care recipient's needs, prognosis, and ability to maintain placement. A better understanding of what facilities and hospice personnel can and will do can help family caregivers in planning their own involvement in care. LIMITATIONS: Limitations of this study included the lack of ethnic diversity in the sample, potential for recruitment bias related to the reliance on hospice personnel who may have acted as “gatekeepers” when choosing which family caregivers to approach, and the inability to observe or conduct follow-up interviews with all the participants.




School of Nursing



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