The hidden experience of radiotherapy to the head and neck: a qualitative study of patients after completion of treatment.

Only a small proportion of cancer patients undergo radical radiotherapy to the head and neck, but their needs are particularly complex. Radiation reactions often exacerbate existing functional difficulties and may severely limit 'normal' life. Few existing studies examine what happens when radiotherapy is over, yet this is the time when reactions are at their peak and day to day links with the hospital are severed. This naturalistic inquiry uses a combination of methods to explore the experiences of 12 patients after completion of radiotherapy to the head and neck. The impact of radiotherapy and the profound disruption to daily life is shown by the uncertainty and unpredictability of symptoms, the waiting, ambiguity and loss of self integrity which occurs throughout this time. Despite considerable physical and emotional trauma, patients showed remarkable resilience and a profound reluctance to ask for help. The findings demand that we re-examine our styles of communication, and consider how well we give information and listen to what is really happening. It is imperative that we provide greater consistency and continuity of care during radiotherapy, recognize the impact of the whole experience and respond to the post-treatment needs of this unique patient group.