From the carer’s mouth: A phenomenological exploration of carer experiences with head and neck cancer patients

Abstract

Objective Receiving a diagnosis of head and neck cancer is devastating for patients and family carers and causes high levels of distress. Previous studies report that carer distress levels exceed that of patients, but go largely unnoticed by health professionals. To date, there is a paucity of studies that have described carers' perspectives of the lived experience of caring for a loved one diagnosed with head and neck cancer. The aim of this study was to explore the lived experiences of carers of patients diagnosed with head and neck cancer. Methods This qualitative study was informed by descriptive phenomenology. Carers of patients who had been diagnosed with head and neck cancer within the last 6 years were recruited from participating hospitals in Perth, Western Australia. Semi-structured interviews were conducted with 20 carers of patients diagnosed with head and neck cancer. Thematic analysis was conducted to gain an understanding of participants lived experiences. Results Key themes identified were: Silent Suffering, Gamut of Emotions, Causal Attribution, Changing Priorities, Gaining Support, and Coping. The changing priorities themes highlights that carers prioritised (a) being available for their loved one and (b) taking an active role in managing head and neck cancer symptoms and side effects. Conclusions Carers of patients diagnosed with head and neck cancer experience distress. Instead of seeking support, carers often elected to suffer in silence. Implications for…