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What are the sources of distress in a range of cancer caregivers? A qualitative study

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Abstract

Purpose

Caring for a person diagnosed with cancer is associated with elevated distress that may impact on caregiver health and patient outcomes. However, caregivers’ distress is relatively under-researched. This Australian study explored a range of caregivers’ reported sources of distress.

Methods

The grounded theory approach informed semi-structured interviews that were conducted with a purposive and broad range sample of distressed caregivers identified through the ‘Structured Triage And Referral by Telephone’ (START) trial. A grounded theory framework was used to generate themes with data analysed by two independent coders using the NVivo software.

Results

Caregivers (n = 14) were aged from 25 to 80 years, including two bereaved caregivers. The relationships of the caregivers to the patients were as follows: partner (n = 8), parent (n = 1), child (n = 3), sibling (n = 1), and friend (n = 1). Six major themes emerged in relation to sources of distress: (1) a lack of sufficient and timely information; (2) uncertainty; (3) the role and duties of caregiving; (4) lack of family-centred services; (5) practical challenges; and (6) impact of distress.

Conclusion

Caregivers face a number of specific challenges beyond those experienced by patients. It is essential to ensure that caregivers are actively well-informed and well-supported alongside the person who is diagnosed with cancer.

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Author information

Authors and Affiliations

  1. School of Medicine and Public Health, University of Newcastle, Level 4 West, HMRI Building, Callaghan, NSW, 2308, Australia

    Jo Taylor, Elizabeth Fradgley, Emma Byrnes & Christine Paul

  2. Priority Research Centre for Health Behaviour, University of Newcastle, Callaghan, Australia

    Jo Taylor, Elizabeth Fradgley, Tara Clinton-McHarg & Christine Paul

  3. Priority Research Centre for Cancer Research Innovation and Translation, University of Newcastle, Callaghan, Australia

    Jo Taylor, Elizabeth Fradgley, Tara Clinton-McHarg & Christine Paul

  4. Cancer Institute New South Wales, Eveleigh, Australia

    Elizabeth Fradgley

  5. School of Psychology, University of Newcastle, Callaghan, Australia

    Tara Clinton-McHarg

  6. Priority Research Centre for Generational Health and Aging, University of Newcastle, Callaghan, Australia

    Emma Byrnes

  7. Hunter Research Cancer Alliance, HMRI Building, New Lambton Heights, Australia

    Christine Paul

Authors
  1. Jo Taylor
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  2. Elizabeth Fradgley
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  3. Tara Clinton-McHarg
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  4. Emma Byrnes
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  5. Christine Paul
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Contributions

Jo Taylor, Elizabeth A. Fradgley, Tara Clinton-McHarg, and Christine L Paul contributed to the study conception and research question. Jo Taylor conducted the qualitative interviews. Emma Byrnes acted as the second coder for the double coding of interview transcripts. Data extraction and coding were conducted by Jo Taylor and Emma Byrnes. The first draft of the manuscript was written by Jo Taylor. Elizabeth A. Fradgley, Tara Clinton-McHarg, Emma Byrnes, and Christine L Paul commented on subsequent versions of the manuscript. All authors read and approved the final manuscript.

Corresponding author

Correspondence to Jo Taylor.

Ethics declarations

This study was approved by the University of Newcastle Research Ethics Committee (H-2016-0180). The authors declare that they have no conflict of interest.

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Taylor, J., Fradgley, E., Clinton-McHarg, T. et al. What are the sources of distress in a range of cancer caregivers? A qualitative study. Support Care Cancer 29, 2443–2453 (2021). https://doi.org/10.1007/s00520-020-05742-0

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  • DOI: https://doi.org/10.1007/s00520-020-05742-0

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