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

Abstract

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.

Oral health and quality of life among patients with head and neck cancer or haematological malignancies

“…Symptoms and psychosocial problems may not be reported spontaneously by patients, and clinicians may not be sensitive enough to the patients' problems. It is necessary to ask about oral function and general aspects of quality of life to identify problems that the patient may be experiencing [7,22,29,34,38,50]. Patient experiences of oral symptoms and HRQOL necessitate assessment of health rather than disease, and in dentistry, the prevailing clinical model regards health as equal to the absence of disease.…”

Changes in health related quality of life in women and men undergoing radiation treatment for head and neck cancer and the impact of smoking status in the radiation treatment period

“…The diagnosis and the following treatment may exert a severe impact on patient's quality of life (QOL) (So et al, 2012). The malignancy affects the most visible area of the body, and may influence the most fundamental activities of daily life in a negative way, such as speech, breathing, eating and drinking (Larsson and Hedelin, 2003;Wells 1998). H&N cancer patients' illness often involves physical symptoms, psychological distress, as well as side effects from RT (Archer et al, 2008).…”

Health Related Quality of Life Questionnaires: Are They Fit for Purpose?

“…Examples were given within the literature of individual and patient orientated care and although the teams judged this as time consuming, (McLane et al, 2003) it was seen to have value and focus to the team and patient interactions. H&NC patients undergoing treatment have been described as resilient and resistant to offers of help (Wells, 1998), an issue echoed within the semi-structured interviews when a participant described not wanting to bother busy ward staff unless there was a real need. For example it might also be that there is some difficulty in patient compliance and adherence to treatment programmes that needs to be identified and addressed (Edmonds and MaGuire, 2007).…”