Living with multiple myeloma: experiences of patients and their informal caregivers

The purpose of this study was to explore the experience of living with myeloma after completion of treatments in patients and their informal caregivers. Qualitative interviews were carried out with 20 patients living with myeloma and 16 of their informal caregivers (mostly spouses), asking them through semi-structured interviews to talk about the effects of myeloma on their lives, issues and concerns, their supportive care needs and how they were coping in everyday life. Key findings indicate the significant impact myeloma has on patients' and caregivers' emotional, role, social and work-related areas of life. While patients seemed less engaged with their illness, their informal caregivers were providing practical and emotional support to patients almost exclusively, often by neglecting their own needs. This increased engagement with the informal caring often led to experiences of a heightened illness burden and difficulties with coping. Both patients and caregivers had significant fears and uncertainty about the future, with myeloma being described as a 'time bomb'. Both patients and caregivers were concealing stressful situations related to the illness from each other in an effort to protect them, although this resulted in isolation. While health professionals' attention has been concentrated in helping patients to get through treatments, it is imperative that psychosocial rehabilitation is offered also to those who survive many years after diagnosis and are off treatments. Caregivers are particularly vulnerable to the high demands of caring for myeloma patients, and a more concerted action by health professionals should be directed to them.