“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 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.