Silenced: Patients' experiences of voicelessness in head and neck cancer.

Abstract

The objective of this qualitative study was to explore patients' experiences of communicating with health professionals following a diagnosis of head and neck cancer (HNC). A qualitative research approach based on social constructionist theory was used. A total of 21 in-depth semi-structured interviews were conducted with people diagnosed with HNC. Thematic analysis was used to identify themes. The experience of losing the capacity for speech was experienced by survivors of HNC as distressing and traumatic. Voicelessness was not just a loss of physical speech, but a holistic experience of silencing. A number of tensions emerged including patients' experiences of losing their voice and then finding different ways to verbally express themselves; in interactions with health professionals there was a tension between abrupt, hurried communication and a slower, more mindful communication style. Sub-themes around communication style emerged where disparities between levels of health literacy were unaddressed, and patients' experienced a lack of empathy. Another tension experienced was between an old style medical model and the ideal of person-centred care and the biopsychosocial model of health. Whether HNC patients lose their voice temporarily, have periods of voicelessness, or are able to speak, but feel unheard, the treatment experience is too often one of disempowerment and silencing of their perspectives. Health professionals are challenged to find creative communication methods, to practice mindful listening, source speech pathology and adaptive technologies, and to facilitate communication that supports patients in expressing their values, preferences and needs.