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

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 beca...

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Bibliographic Details
Published in:Supportive care in cancer 2022-05, Vol.30 (5), p.4073-4080
Main Authors: Weaver, Rhys, O’Connor, Moira, Golding, Raelee M., Gibson, Chandrika, White, Rohen, Jackson, Melanie, Langbecker, Danette, Bosco, Anna Maria, Tan, Maureen, Halkett, Georgia K. B.
Format: Article
Language:English
Subjects:
Cancer
Care and treatment
Caregivers
Caregivers - psychology
Coping
Emotions
Head & neck cancer
Head and neck cancer
Head and Neck Neoplasms - therapy
Health aspects
Humans
Medicine
Medicine & Public Health
Mental health
Motivation
Nursing
Nursing Research
Oncology
Oncology, Experimental
Original Article
Pain Medicine
Qualitative Research
Quality of life
Rehabilitation Medicine
Squamous cell carcinoma
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Summary: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.
ISSN:0941-4355
1433-7339
DOI:10.1007/s00520-021-06761-1