Challenges Facing Families at the End of Life in Three Settings

Abstract

This study examined the challenges faced by family members at the end of life in different care settings and how those challenges compare across settings. A total of 30 participants, who had a family member die in inpatient hospice, a skilled nursing facility, or a community support program were interviewed. Semi-structured interviews were recorded and transcribed. Text was coded using qualitative thematic analysis. Themes were determined by consensus. Twelve challenges were identified across care sites. Two themes emerged in all three settings: bearing witness and the experience of loss. The study findings contribute to our knowledge of family perceptions of care in different settings and raises awareness of the need for further research describing the experiences at the end of life in different settings and the importance of creating and testing interventions for both setting specific needs and universal issues.

KEYWORDS:

• family caregiver
• settings
• terminal care

This study was supported by funds from the Charlotte Jane and Ralph A. Rodefer Chair at the University of Wisconsin—Madison, School of Nursing. Dr. Kehl was supported by grant 1UL1RR025011 from the Clinical and Translational Science Award (CTSA) program of the National Center for Research Resources, National Institutes of Health during the writing of this article. The authors would like to acknowledge the assistance of Lioness Ayres, PhD in developing the interview questions.