Characteristics and unmet care needs of unbefriended residents in long-term care: a qualitative interview study

Abstract

Objectives: This study explored the impact of being ‘unbefriended’ for residents in Canadian long-term care (LTC) homes. Residents are ‘unbefriended’ if they lack decision-making capacity and family or friends to act as their legal representative. Research suggests that unbefriended individuals may have unmet needs and experience poor quality of care due to their limited social support. Our specific objectives were to identify resident characteristics, their unmet care needs, and implications for quality of care and quality of life.

Methods: We conducted semi-structured interviews with 39 LTC staff and 3 public guardians. Interviews took place between March 2017 and September 2017. All interviews were audio recorded and transcribed verbatim. We analyzed the interviews using content analysis.

Results: We found two groups of unbefriended LTC residents: (1) individuals with no living conjugate partner or children and (2) individuals with histories of substance use, homelessness, and estrangement from family. Unbefriended residents have no one to help meet needs for social interaction and engagement or to assist in purchasing needed personal items and uninsured services. LTC staff report significant care issues with unbefriended residents at end of life, including more aggressive behaviors and inappropriate care practices.

Conclusion: Our findings demonstrate alarming issues in quality of life and quality of care for unbefriended residents. Unbefriended residents had limited social support and difficulty accessing even basic personal items. We discuss implications for policy and practice.

Keywords:

• Public guardian
• social isolation
• quality of life
• quality of care
• long-term care

Acknowledgements

The authors thank Cathy McPhalen, PhD, of thINK Editing Inc, Edmonton, Canada, for providing editorial support that was funded by Dr Estabrooks’ Canada Research Chair in accordance with Good Publication Practice (GPP3) guidelines (http://www.ismpp.org/gpp3).

Conflict of interest

In partnership with Alzheimer Society of Canada Doctoral Fellowship funding, S.A. Chamberlain received funding support from Revera Incorporated, a for-profit owner of long term care facilities in Canada. S.A. Chamberlain conducted interviews with staff in four Revera facilities. Revera had no role in the development of the interview guide, the data analysis, or the preparation of this manuscript.

Funding

This work was supported by an Alzheimer Society of Canada Doctoral Fellowship to SC and a Tier 1 Canada Research Chair in Knowledge Translation to CE.

Author contributions

S.A. Chamberlain, C.A. Estabrooks and W.D. Duggleby planned the study. C.A. Estabrooks supervised the data collection and analysis. S.A. Chamberlain conducted the data collection and preliminary data analysis, and drafted the manuscript. W.D. Duggleby contributed to data analysis and to revising the final manuscript. P.B. Teaster contributed to revising the final manuscript. All authors contributed to the development and revision of the manuscript. All correspondence regarding this study should be addressed to Stephanie Chamberlain, [email protected].