Purpose: The study aims to describe patients' experiences of swallowing difficulties following (chemo)radiotherapy for head and neck cancer and to explore any changes over time.
Methods: A purposive sample of patients with swallowing difficulties was selected at a range of time points, from 3 to 18 months following treatment. Ethnographic observations of 12 patients were conducted in their own homes, over a mealtime situation. Nine new patients were interviewed about changes to their eating and drinking from pre- to post-treatment. Thematic analysis was used to code and analyse the data.
Results: Patients' reports of swallowing function were divided into four time zones: pre-treatment, during radiotherapy, early (0-3 months) and late (6-18 months) time points following treatment. The majority reported minimal problems at diagnosis, but marked impairment during and after radiotherapy, without a return to pre-treatment functioning. The focus was on severe physical side effects and changes to food preparation during radiotherapy and in the early phase of recovery. By 6 months, side effects began to subside, but swallowing was still difficult, leading to major changes to family life, socialisation and lifestyle.
Conclusions: Swallowing problems after (chemo)radiotherapy are multi-faceted and highly individualised and restrict lives in the long term. Swallowing ability may improve in time, but does not appear to return to pre-treatment function. Further work is required to find ways of being able to best support patients living with this long-term condition.
Keywords: Chemoradiotherapy; Head and neck cancer; Qualitative; Swallowing.