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Patient and carer experience of nutrition care throughout and beyond treatment for head and neck cancer: a qualitative longitudinal study

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Abstract

Nutrition care plays a critical role in optimising outcomes for patients receiving treatment for head and neck cancer (HNC), with carers playing an important role in supporting patients to maintain nutrition intake. This study explores patient and carer experience of nutrition care from diagnosis of HNC to 1 year post treatment completion to identify areas for improvement of service delivery. A longitudinal qualitative study design was used with a heterogeneous sample of 20 patients and 15 carers of patients undergoing curative intent treatment for HNC. Interviews conducted at four time points provided a total of 117 interview datasets that were analysed using reflexive thematic analysis based on Gadamerian hermeneutic inquiry. Patient and carer experiences were reflected in two primary themes: (1) the battle to maintain control and (2) navigating the road ahead. This research identifies the need to co-design strategies to improve nutrition care that is inclusive of patients and carers.

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Ethics approval was obtained by the Royal Brisbane and Women’s Hospital Research & Ethics Committee, Brisbane, and the Ethics Committee of the University of Queensland, Brisbane, Australia (HREC/17/QRBW/681), with Site Specific Approval for the study to be conducted at the Royal Brisbane and Women’s Hospital.

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Acknowledgements

We would like to thank all patient and carer participants for their valuable contribution to this project. We would also like to thank members of the multidisciplinary HNC clinic at the RBWH for supporting this project.

Funding

Principal investigator (JH) was supported by a RBWH Postgraduate Research Scholarship from the RBWH Foundation for this project. The RBWH Foundation had no involvement in this study.

Author information

Authors and Affiliations

  1. School of Human Movement and Nutrition Sciences, University of Queensland, St Lucia, Australia

    Joanne S. Hiatt, Adrienne Young, Teresa E. Brown, Merrilyn Banks & Judith Bauer

  2. Department of Nutrition and Dietetics, Royal Brisbane and Women’s Hospital, Level 2, Dr James Mayne Building, Butterfield Street, Herston, QLD, 4029, Australia

    Joanne S. Hiatt, Adrienne Young, Teresa E. Brown & Merrilyn Banks

Authors
  1. Joanne S. Hiatt
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  2. Adrienne Young
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  3. Teresa E. Brown
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  5. Judith Bauer
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Contributions

Conceptualisation: Joanne Hiatt, Teresa Brown, Judith Bauer and Merrilyn Banks. Methodology: Joanne Hiatt and Judith Bauer. Data collection: Joanne Hiatt. Data analysis: Joanne Hiatt and Adrienne Young. Writing—original draft preparation: Joanne Hiatt. Writing—review and editing: Joanne Hiatt, Teresa Browns, Adrienne Young, Judith Bauer and Merrilyn Banks. Funding acquisition: Joanne Hiatt. Resources: Joanne Hiatt. Supervision: Teresa Brown, Adrienne Young, Merrilyn Banks and Judith Bauer.

Corresponding author

Correspondence to Joanne S. Hiatt.

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Written informed consent forms were obtained from patient and carer participants prior to initiating research activities.

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The authors declare no competing interests.

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Hiatt, J.S., Young, A., Brown, T.E. et al. Patient and carer experience of nutrition care throughout and beyond treatment for head and neck cancer: a qualitative longitudinal study. Support Care Cancer 30, 813–824 (2022). https://doi.org/10.1007/s00520-021-06484-3

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  • DOI: https://doi.org/10.1007/s00520-021-06484-3

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