The psychological experience of living with head and neck cancer: A systematic review and meta-synthesis

Objective To summarise patients' experiences of head and neck cancer (HNC) by examining the findings of existing qualitative studies Methods We undertook a systematic review and meta-synthesis of qualitative studies in 29 published articles using Noblit and Hare's 'meta-ethnography' approach to synthesise findings. The inclusion criteria were primary qualitative studies, focusing on HNC patients' experience and an English abstract. Seven databases were systematically searched. Results The articles focused on the experience of having HNC, the experience of treatments and the role of information. Our synthesis identified six core concepts - uncertainty and waiting, disruption to daily life, the diminished self, making sense of the experience, sharing the burden and finding a path. People experienced significant disruption to normal daily activities, because of the physical and emotional effects of HNC and its treatment. Day-to-day challenges were compounded by social and existential changes and a palpable loss of the individual's sense of self and future. In order to find a way through the considerable uncertainty and daily challenge of living with and beyond HNC, patients made continual efforts to make sense of their experience. Supportive relationships with their social network, HNC peers and healthcare professionals were particularly important, but support following treatment completion was sometimes limited. Perceptions of the future were affected by whether they saw life as diminished, merely changed or even enhanced by the experience of cancer. Conclusions This review supports further specific research into these emerging themes and provides a context for future work, informing interventions to improve patients' experiences.