Survivorship experiences of working-age adults previously treated for oropharyngeal cancer. Moving towards a post-treatment self, its hidden impact and an absence of recognition: An interpretative phenomenological analysis.

Incidence of oropharyngeal cancer continues to increase in many countries worldwide, largely due to human papilloma virus (HPV) 16 & 18. Treatment for oropharyngeal cancer can result in long-term side effects. There may be enduring societal costs associated with the long-term physical and psychological side effects of treatment. Current literature suggests HPV may negatively affect a person’s lived post-treatment experience. However, there is little evidence to support this. Aim The aim was to explore the participants’ lived experience of survivorship following treatment for oropharyngeal cancer. From this, recommendations are made to inform future research. Method Twelve participants were recruited through two oncology centres in England. Participants were of working age and had completed active treatment between six months and five years prior to interview. A single interview was conducted with each participant. Interpretative phenomenological analysis (IPA) was used to inform the design and analysis. Consistent with IPA, the participants' individual experiences were analysed descriptively, conceptually and linguistically. Results All participants spoke about the physical side effects of treatment. Several described difficulties in coming to terms with a post-treatment self. These difficulties were exacerbated by the lack of visible outward change, thereby causing others to disregard the significance of their experience. There was a desire from some for external recognition of their experience. In attempting to establish a post-treatment self, those previously treated for oropharyngeal cancer may attempt to seek recognition for their experience. Gaining recognition can often be hampered due to the hidden nature of the experience to the outside world. Recommendations Several areas are suggested for future research. These include experiential research involving oropharyngeal cancer patients and their relatives, and people’s experiences of choice and informed consent. Auditing existing provision of supportive care post-treatment and exploring adaptation and recognition in a larger patient sample would also be beneficial for our understanding of this group