The experiences of head and neck cancer patients requiring major surgery

The prevalence of head and neck cancers is lower (3.5% of total cancers in Australia) than for a number of other cancers. Treatment for head and neck cancer is often drastic and debilitating and patient outcomes are poorer.

This qualitative study explored the experiences of cancer patients who underwent surgery for head and neck cancer.

In-depth face-to-face interviews were conducted with 12 patients 7 to 26 months after surgery. Interviews were thematically analyzed to produce a rich description of patients' experiences from diagnosis through surgery and beyond.

Critical aspects of patients' experiences are described through the following themes: only having half the story, shocks and aftershocks, living with the aftermath, and being supported. Participants identified difficulties arising from receiving insufficient, confusing, and often untimely information. The persistent and traumatic nature of what patients endure challenges their physical, mental, and emotional coping capacity and, in some cases, their motivation to live.

There is a need to address gaps in support and education of patients and carers. Of particular concern is the problem related to information provision and comprehension. Critical examination of current practices, together with efforts toward coordinated care tailored to individual needs, is required, along with outreach services for patients in rural areas.

The development and evaluation of targeted resources in a variety of forms such as DVD, Internet, and pamphlets are needed. Robust assessment strategies are required to inform supportive interventions matched to stages and significant events in patients' journeys.