Abstract
Purpose: Caring for a loved one with a malignant fungating wound is very challenging and causes extreme physical and psychological distress. The aim of this study was to explore the experiences of carers who care for a loved one with a fungating breast wound. Method: To explore the lived experiences of carers a methodological framework using Heideggerian hermeneutic phenomenology and semi-structured interviews was used. Seven carers were interviewed from January until November 2009. Results: Having to deal with a situation of a loved one with a visible cancer was hard for all the carers. The visibility of the cancer was one of the most shocking aspects to deal with from the perspective of the patient and the carer. The presence of the visible wound and a cancer at an advanced stage contributed to a change in the relationship and extreme suffering for both the patient and the carer. Despite many problems such as wound odour and copious discharge from the wound, which was difficult to control carers did their best to help their loved one with the wound. Gradually the wound became the centre of the patient and carer’s life and a great deal of time was spent trying to control the wound symptoms. All carers managed the wound on their own without help and advice from health care practitioners. For all of them it was a major burden and they felt isolated. Conclusion: This study contributes to an understanding that the care of women and their carers needs strategies that are integrated in palliative wound care, that takes a holistic and empathic approach that responds to patients and carers psychosocial and emotional needs and a practical need for information to help carers assist in managing the wound related symptoms.