Abstract

Background

With improved cancer survival, more people are experiencing short- and long-term chemotherapy side-effects, such as reduced taste and smell. These effects may be temporary or permanent and are associated with altered quality of life due to reduced food enjoyment, weight loss, changed patterns of food intake and social activities linked to eating and drinking, emotional distress and interference with daily life. Taste and smell problems are difficult to diagnose and treat in clinical oncology settings, often because of a lack of routine assessment practices. The aim of this study was to gain insight from people living with and beyond cancer about their experiences of chemotherapy side-effects and strategies used to manage their eating behaviours and diet.

Method

Data was collected through in-depth face to face semi-structured interviews with people living with and beyond cancer in the East Midlands of England. Data were analysed using interpretative phenomenological analysis (IPA).

Results

Data analysis led to a narrative organized in two parts. The first part (retrospective understanding of chemotherapy side-effects experiences) reports on the experience of temporary and permanent reduced taste and smell, and their impact on eating behaviours and quality of life, as well as feelings of desolation contrasted to exceptional received support. The second part explains strategies used by participants to manage their health, barriers to and facilitators of access to information and professional advice.

Conclusion

This retrospective investigation of survivors’ experienced chemotherapy side-effects gave access to aspects of their experience that often remain undiscussed with healthcare professionals. Further research is needed to develop a taxonomy of taste and smell alterations and food hedonics, which may give clinicians better diagnostic clues to the precise nature of these challenges and inform the design of interventions to ameliorate specific treatment-related side-effects.