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Caregiving and mutuality among long-term colorectal cancer survivors with ostomies: qualitative study

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Abstract

Purpose

The cancer caregiving literature focuses on the early phases of survivorship, but caregiving can continue for decades when cancer creates disability. Survivors with an ostomy following colorectal cancer (CRC) have caregiving needs that may last decades. Mutuality has been identified as a relationship component that can affect caregiving. This paper discusses how mutuality may affect long-term ostomy caregiving.

Methods

We conducted semi-structured, in-depth interviews with 31 long-term CRC survivors with ostomies and their primary informal caregivers. Interviewees were members of an integrated health care delivery system in the USA. We used inductive theme analysis techniques to analyze the interviews.

Results

Most survivors were 71 years of age or older (67%), female (55%), and with some college education (54%). Two thirds lived with and received care from spouses. Caregiving ranged from minimal support to intimate assistance with daily ostomy care. While some survivors received caregiving far beyond what was needed, others did not receive adequate caregiving for their health care needs. Low mutuality created challenges for ostomy caregiving.

Conclusions

Mutuality impacts the quality of caregiving, and this quality may change over time, depending on various factors. Emotional feedback and amplification is the proposed mechanism by which mutuality may shift over time. Survivorship care should include assessment and support of mutuality as a resource to enhance health outcomes and quality of life for survivors with long-term caregiving needs and their caregivers. Appropriate questionnaires can be identified or developed to assess mutuality over the survivorship trajectory.

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Notes

  1. We use “ostomy” to refer to colostomy and ileostomy.

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Acknowledgements

We thank Catherine Briggs for her invaluable assistance as an interviewer and gratefully acknowledge the individuals who agreed to participate in this study and share their experiences with us.

Funding

This study was funded by a grant from the National Cancer Institute (1R21 CA129887).

Author information

Authors and Affiliations

  1. Kaiser Permanente Division of Research, 2000 Broadway, Oakland, CA, 94612, USA

    Andrea Altschuler & Petra Liljestrand

  2. City of Hope, 1500 E Duarte Rd, Duarte, CA, 91010, USA

    Marcia Grant

  3. Kaiser Permanente Center for Health Research, 3800 N. Interstate Avenue, Portland, OR, 97227, USA

    Mark C. Hornbrook & Carmit K. McMullen

  4. Perelman School of Medicine, University of Pennsylvania, 3400 Spruce Street, Philadelphia, PA, 19104, USA

    Robert S. Krouse

  5. Leonard Davis Institute of Health Economics, University of Pennsylvania, 3641 Locust Walk #210, Philadelphia, PA, 19104, USA

    Robert S. Krouse

  6. Cpl. Michael J. Crescenz Veterans Affairs Medical Center, 3900 Woodland Ave., Philadelphia, PA, 19104, USA

    Robert S. Krouse

Authors
  1. Andrea Altschuler
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  2. Petra Liljestrand
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  3. Marcia Grant
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  4. Mark C. Hornbrook
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  5. Robert S. Krouse
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  6. Carmit K. McMullen
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Corresponding author

Correspondence to Andrea Altschuler.

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Conflict of interest

The authors declare that they have no conflict of interest.

Ethical approval

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki Declaration and its later amendments or comparable ethical standards.

Informed consent

Informed consent was obtained from all individual participants included in the study.

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Altschuler, A., Liljestrand, P., Grant, M. et al. Caregiving and mutuality among long-term colorectal cancer survivors with ostomies: qualitative study. Support Care Cancer 26, 529–537 (2018). https://doi.org/10.1007/s00520-017-3862-x

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  • DOI: https://doi.org/10.1007/s00520-017-3862-x

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