Understanding distress and distressing experiences in patients living with multiple myeloma: An exploratory study

Purpose: The aim of this study was to gain greater insight into the symptoms and distressing experiences of patients living with myeloma. Methods: A qualitative interview evaluation of distressing experiences in patients with myeloma, following a grounded theory approach, was used. Sampling was purposive, with particular attention to diversity in age and ethnic minority patients. Results: Fifteen patients were interviewed. Key findings suggest that (a) many individual symptoms were not considered as particularly distressing beyond the acute phase of the disease and its treatment, except when they occurred in a context that was threatening to the patients; (b) visible symptoms that showed to other people one's disease condition may be particularly distressing, and (c) the conditioning phase of the transplant was particularly stressful and a violation to one's body, described by some patients as 'being somehow dead'. Conclusion: The personal meaning ascribed to symptoms and treatments as well as the context in which they occur are important determinants of distress. Such patient meanings and contexts should be explored by health professionals in-depth, in order to prepare patients for the experience and support them more fully.