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“Completely and utterly flummoxed and out of my depth”: patient and caregiver experiences during and after treatment for head and neck cancer—a qualitative evaluation of barriers and facilitators to best-practice nutrition care

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Abstract

Background

Malnutrition is prevalent in patients with head and neck cancer (HNC), impacting on outcomes. Despite publication of best-practice nutrition care clinical guidelines, evidence-practice gaps persist.

Aim

This project aimed to understand the perspectives of patients and their caregivers about nutritional care and how their unmet supportive care needs can be better addressed in designing a new model of care (MOC). The results will contribute to documenting the barriers and enablers to implementing best practice nutrition care for patients with HNC.

Method

Qualitative interviews were conducted with patients who had completed radiotherapy with or without (+/−) other treatment modality (surgery and/or systematic therapy) of curative intent for HNC. Patients were purposively sampled from a major tertiary referral centre in Sydney, Australia. Patients’ primary caregivers were also invited to participate if both parties consented. A semi-structured interview schedule was developed to elicit information about barriers and facilitators to change and inform development of the new MOC. Interviews were transcribed verbatim then analysed using an inductive thematic approach. This study was one component of a mixed methods design to explore the barriers and facilitators to best-practice nutrition care in a head and neck oncology unit.

Results

Eleven participants (seven patients, four caregivers) took part in the interviews. Four key themes were identified with branching themes within each: (1) being ill-prepared for the impact of treatment, even when advised; (2) navigating complex systems to meet significant care needs; (3) depleted by overwhelming and prolonged suffering; and (4) information lost in translation.

Conclusions

This study highlights the unique and complex care needs of people with HNC and those caring for them. To design and successfully deliver a patient-centred MOC, specific strategies will be required to address: early and ongoing access to expert supportive care clinicians; integrated and coordinated care; individual information, education and support needs and; and education of MDT staff in accurate and consistent messaging, ensuring nutrition care is a collective responsibility. Nutrition care did not appear to be viewed separately to overall care from the patient perspective as the importance of nutrition ultimately became viewed as vital treatment.

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Acknowledgements

The study investigators wish to thank the patient and caregiver participants for generously giving of their time and sharing their experiences to inform patient and family-centred models of care and improve service delivery for those living with head and neck cancer.

Funding

Chief investigator (M Findlay) was supported by a Translating Research Into Practice Fellowship from the National Health and Medical Research Council and Cancer Institute New South Wales, Australia (APPID#1092508).

Author information

Authors and Affiliations

  1. Cancer Services, Royal Prince Alfred Hospital, Sydney, New South Wales, Australia

    Merran Findlay

  2. Chris O’Brien Lifehouse, Sydney, New South Wales, Australia

    Merran Findlay

  3. Sydney Catalyst Translational Cancer Research Centre, University of Sydney, Sydney, New South Wales, Australia

    Merran Findlay, Judith Bauer & Kathryn White

  4. Research in Implementation Science and eHealth (RISe), Faculty of Health Sciences, University of Sydney, Sydney, New South Wales, Australia

    Nicole M. Rankin & Tim Shaw

  5. School of Human Movement and Nutrition Sciences, The University of Queensland, Brisbane, Queensland, Australia

    Judith Bauer

  6. Cancer Nursing Research Unit, Susan Wakil School of Nursing and Midwifery, Faculty of Medicine and Health, Sydney Nursing School, University of Sydney, Sydney, New South Wales, Australia

    Gemma Collett & Kathryn White

Authors
  1. Merran Findlay
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  2. Nicole M. Rankin
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  3. Judith Bauer
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  4. Gemma Collett
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  5. Tim Shaw
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  6. Kathryn White
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Contributions

Conceptualization: Merran Findlay, Judith Bauer, Nicole Rankin, Tim Shaw and Kathryn White; Methodology: Merran Findlay, Judith Bauer, Nicole Rankin, Tim Shaw and Kathryn White; Formal analysis and investigation: Merran Findlay, Gemma Collett and Kathryn White; Writing—original draft preparation: Merran Findlay; Writing—review and editing: Merran Findlay, Judith Bauer, Nicole Rankin, Gemma Collett, Tim Shaw and Kathryn White; Funding acquisition: Merran Findlay, Resources: Merran Findlay; Supervision: Judith Bauer, Nicole Rankin, Tim Shaw and Kathryn White.

Corresponding author

Correspondence to Merran Findlay.

Ethics declarations

Ethics approval was obtained from the Human Research Ethics Committee at Royal Prince Alfred Hospital, Sydney, Australia (HREC/14/RPAH/524) with Site Specific Approval for the study to be conducted at Royal Prince Alfred Hospital and Chris O’Brien Lifehouse.

Disclaimer

The funding body did not influence the study procedures or interpretation of results.

Conflict of interest

The authors have no conflict of interest to disclose.

Additional information

Chief Investigator (M Findlay) has full control of primary data which is available upon reasonable request.

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Findlay, M., Rankin, N.M., Bauer, J. et al. “Completely and utterly flummoxed and out of my depth”: patient and caregiver experiences during and after treatment for head and neck cancer—a qualitative evaluation of barriers and facilitators to best-practice nutrition care. Support Care Cancer 28, 5771–5780 (2020). https://doi.org/10.1007/s00520-020-05386-0

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  • DOI: https://doi.org/10.1007/s00520-020-05386-0

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