Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2022 May;30(5):4073-4080.
doi: 10.1007/s00520-021-06761-1. Epub 2022 Jan 23.

"My life's not my own": A qualitative study into the expectations of head and neck cancer carers

Rhys Weaver  1 , Moira O'Connor  2 , Raelee M Golding  1 , Chandrika Gibson  1 , Rohen White  3 , Melanie Jackson  4 , Danette Langbecker  5 , Anna Maria Bosco  1 , Maureen Tan  2 , Georgia K B Halkett  6
Affiliations

"My life's not my own": A qualitative study into the expectations of head and neck cancer carers

Rhys Weaver et al. Support Care Cancer. 2022 May.

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.

Keywords: Cancer; Caregivers; Head and neck cancer; Psycho-oncology; Qualitative research; Supportive care needs.

PubMed Disclaimer

References

    1. Leemans CR, Snijders PJ, Brakenhoff RH (2018) The molecular landscape of head and neck cancer. Nat Rev Cancer 18(5):269. https://doi.org/10.1038/nrc.2018.11 - DOI - PubMed
    1. Cancer Australia. Head and neck cancer in Australia statistics Cancer Australia2020 [updated 20 October 2020; cited 2021. Available from: https://www.canceraustralia.gov.au/cancer-types/head-and-neck-cancer/sta... . Accessed 25 June 2021
    1. Alsahafi E, Begg K, Amelio I, Raulf N, Lucarelli P, Sauter T et al (2019) Clinical update on head and neck cancer: molecular biology and ongoing challenges. Cell Death Dis 10(8):1–17. https://doi.org/10.1038/s41419-019-1769-9 - DOI
    1. Ganzer H, Touger-Decker R, Byham-Gray L, Murphy BA, Epstein JB (2015) The eating experience after treatment for head and neck cancer: a review of the literature. Oral Oncol 51(7):634–642. https://doi.org/10.1016/j.oraloncology.2015.04.014 - DOI - PubMed
    1. Shunmugasundaram C, Rutherford C, Butow PN, Sundaresan P, Dhillon HM (2019) Content comparison of unmet needs self-report measures used in patients with head and neck cancer: a systematic review. Psychooncology 28(12):2295–2306 - DOI - PubMed

LinkOut - more resources