Multiple System Atrophy (MSA) and the Family Caregivers’ Burden: A Qualitative Study

Abstract Multiple systemic atrophy (MSA) is a progressive neurodegenerative disease, also characterized by autonomic failure in varying degrees of severity. Caregivers are central to the care and support of people with MSA. This paper aims to investigate and discuss: (a) the most common emotions and reactions among caregivers of MSA patients and how these affect their psychological well-being, (b) the change in caregivers’ quality of life during the progression of the patient’s disease, (c) what are the specific experiences and challenges related to communicating with patients, (d) new strategies and pathways of psychological and social support for caregivers. Sixteen caregivers (mean age 49.63; 75%F) of MSA patients were interviewed through a semi-structured protocol based on two open-ended questions. Through the qualitative analysis, six dominant clusters were identified: cognitive aspects (1), social roles (2), aspects of the patient’s illness (3), practical aspects of patient management (4), emotional-behavioral aspects of the caregiver (5), and acceptance and accompaniment (6). Caregivers of MSA patients report the difficulty of caring for their patients, not only from a physical/organizational point of view but especially from an emotional point of view, suggesting that caregivers are burdened by the expected future effects of neurological disease in general.