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“My life’s not my own”: A qualitative study into the expectations of head and neck cancer carers

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Abstract

Introduction

Cancers that originate from the upper aerodigestive tract are collectively known as head and neck cancer. The most common are squamous cell carcinomas of the oropharynx, larynx, and oral cavity. Head and neck cancer patients experience significant physical and psychological changes because of the disease and treatment. There is a substantial strain on family carers who have extensive responsibilities over most aspects of the patient’s life. The aim of the study was to understand the perspectives of being an HNC carer and their perceived expectations of the role.

Methods

The study adopted a qualitative research design with a social constructionist epistemology. Interviews were conducted with 20 carers who were currently caring for someone diagnosed with head and neck cancer.

Results

Three overarching themes were identified: taking responsibility for the patient’s nutrition, navigating a new and different relationship, and “my life’s not my own.” Participants felt responsible for ensuring the patient was eating and became increasingly frustrated when the patient was unable to intake food. Carers prioritised the patients’ needs at the expense of their own, and several came to resent the role.

Conclusion

Carers’ expectations of their role informed how they approached giving care. Carers need to be supported from diagnosis and encouraged to prioritise their own wellbeing.

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Data availability

The data that support the findings of this study are available on request from the corresponding author. The data are not publicly available due to privacy or ethical restrictions.

Code availability

Not applicable.

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Acknowledgements

The authors would like to thank all participants and consumers for their contributions to this study. Associate Professor Georgia Halkett is currently supported by a Cancer Council of Western Australia Research Fellowship.

Funding

Associate Professor Georgia Halkett is currently supported by a Cancer Council of Western Australia Research Fellowship. Raelee M. Golding was receiving a School of Nursing, Midwifery and Paramedicine, Curtin University Scholarship when this study was being conducted.

Author information

Authors and Affiliations

  1. Curtin School of Nursing, Faculty of Health Sciences, Curtin University, GPO Box U1987, Perth, WA, 6845, Australia

    Rhys Weaver, Raelee M. Golding, Chandrika Gibson, Anna Maria Bosco & Georgia K. B. Halkett

  2. WA Cancer Prevention Research Unit, School of Population Health, Discipline of Psychology, Faculty of Health Sciences, Curtin University, Perth, WA, 6845, Australia

    Moira O’Connor & Maureen Tan

  3. Department of Radiation Oncology, Sir Charles Gairdner Hospital, Nedlands, WA, Australia

    Rohen White

  4. GenesisCare Perth Radiation Oncology, Wembley, WA, Australia

    Melanie Jackson

  5. Centre for Online Health, The University of Queensland, St Lucia, Australia

    Danette Langbecker

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  1. Rhys Weaver
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Contributions

All authors made significant contributions to this research project. Conceptualisation: R.W., M.O., R.G., and G.K.B.H.; methodology: M.O., R.G., and G.K.B.H.; formal analysis: R.W. and G.K.B.H.; funding acquisition: G.K.B.H.; investigation: R.G and G.K.B.H.; project administration: G.K.B.H.; writing—original draft: R.W.; writing—review and editing: R.W., M.O., R.G., CG., R.White., M.J., D.L., A.B., M.T., and G.K.B.H. The manuscript was reviewed and edited by all authors prior to submission. All authors have read and agreed to the published version of the manuscript.

Corresponding author

Correspondence to Georgia K. B. Halkett.

Ethics declarations

Ethics approval

Institutional Review Board Statement: Ethical approval was granted from the university (HRE2018-0691) and participating tertiary hospital (RGS0000001145). The study was conducted according to the guidelines of the Declaration of Helsinki.

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All participants provided written informed consent before participating.

Consent for publication

All participants consented for their de-identified data to be published.

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The authors declare no competing interests.

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Weaver, R., O’Connor, M., Golding, R.M. et al. “My life’s not my own”: A qualitative study into the expectations of head and neck cancer carers. Support Care Cancer 30, 4073–4080 (2022). https://doi.org/10.1007/s00520-021-06761-1

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  • DOI: https://doi.org/10.1007/s00520-021-06761-1

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