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Caring at home until death: enabled determination

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Abstract

Purpose

The importance of family caregivers in providing palliative care at home and in supporting a home death is well supported. Gaining a better understanding of what enables palliative family caregivers to continue caring at home for their family members until death is critical to providing direction for more effective support. The purpose of the study was to describe the experiences of bereaved family caregivers whose terminally ill family members with advanced cancer were successful in achieving a desired home death.

Method

A qualitative interpretive descriptive approach was used. Data were collected using semi-structured, audio-recorded interviews conducted in-person or via telephone in addition to field notes and reflective journaling. The study took place in British Columbia, Canada, and included 29 bereaved adult family caregivers who had provided care for a family member with advanced cancer and experienced a home death.

Results

Four themes captured the experience of caring at home until death: context of providing care, supportive antecedents to providing care, determination to provide care at home, and enabled determination. Factors that enabled determination to achieve a home death included initiation of formal palliative care, asking for and receiving help, augmented care, relief or respite, and making the healthcare system work for the ill person.

Conclusions

Clarifying caregiving goals and supporting the factors that enable caregiver determination appear to be critical in enhancing the likelihood of a desired home death.

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Acknowledgments

The authors thank the British Columbia Cancer Foundation (no. 62R17410) for the grant that funded this research.

Author information

Authors and Affiliations

  1. School of Nursing, University of British Columbia, ART 132, 1147 Research Road, Kelowna, BC, V1V 1V7, Canada

    Carole A. Robinson

  2. School of Nursing, University of British Columbia, ART 223A, 1147 Research Road, Kelowna, BC, V1V 1V7, Canada

    Joan L. Bottorff

  3. School of Nursing, University of British Columbia, Kelowna, BC, Canada

    Erin McFee

  4. College of Graduate Studies, University of British Columbia, EME 2121, 1137 Alumni Avenue, Kelowna, BC, V1V 1V7, Canada

    Laura J. Bissell

  5. British Columbia Cancer Agency, Sindi Ahluwalia Hawkins Centre for the Southern Interior, 399 Royal Avenue, Kelowna, BC, V1Y 5L3, Canada

    Gillian Fyles

Authors
  1. Carole A. Robinson
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  4. Laura J. Bissell
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Corresponding author

Correspondence to Carole A. Robinson.

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Conflict of interest

The authors received grant funding from the British Columbia Cancer Foundation (no. 62R17410) for this research. None of the authors have competing financial interests or a financial relationship with the sponsoring agency. Dr. Robinson has full control of all primary data and agrees to allow the journal to review the data if requested.

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Robinson, C.A., Bottorff, J.L., McFee, E. et al. Caring at home until death: enabled determination. Support Care Cancer 25, 1229–1236 (2017). https://doi.org/10.1007/s00520-016-3515-5

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  • DOI: https://doi.org/10.1007/s00520-016-3515-5

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