Compassionate community for the social inclusion and quality of life of people with multiple sclerosis and their family caregivers

Objective: to qualitatively evaluate the experience of patients with multiple sclerosis (PEM) and family caregivers (CFPEM) linked to the multiple sclerosis program of the National University Hospital of Colombia (PrEM-HUNC), during the formation and consolidation of a compassionate community (CC), for social inclusion and promotion of quality of life. Materials and Method: qualitative interpretative study, with in-depth interviews to nine collaborators. With Creswell and Poth's spiral analysis method, four categories and one topic emerged. Results: the theme "A Community Nest of Growth and Transformation" points out the process of shaping the CC as an experience that made possible changes in the meanings surrounding the disease and the personal and family situation; reveals a process of discovery and learning of shaping different relationships and roles. Conclusions: The CC is an option for building support networks, strengthening personal and family capacities, a way to address the different impacts and challenges of living with multiple sclerosis; it is an alternative to the promotion of quality of life and social inclusion.