An intense and unforgettable experience: the lived experience of malignant wounds from the perspectives of patients, caregivers and nurses

Malignant wounds occur infrequently, but are typically described as devastating and overwhelming. However, there has been little formalised research, and the vast majority of existing malignant wound literature comprises reports of health care professionals from their management of the physical symptoms. Few studies have investigated the lived experience from the perspectives of patients and nurses and none have investigated the experiences of lay caregivers caring for a patient with a malignant wound. As a result, there has been little mention in existing literature of the non physical issues associated with malignant wounds or how they might be addressed. The purpose of this study was to address this gap in knowledge by investigating the lived experience of malignant wounds from the perspectives of those living it. In-depth interviews were conducted with patients, caregivers and nurses. The data were analysed thematically within a hermeneutic phenomenological methodology to show four themes: (i) malodour; (ii) new mode of being-in-the-world; (iii) still room for hope and (iv) enduring memories. Although this study confirmed previous findings that malodour was one of the worst aspects of malignant wounds, it was significant that the other three themes occurred in the previously largely overlooked psychosocial domain.