Facing Muscular Dystrophy During Covid-19 Pandemic: The Role of Support Associations and Spirituality

Abstract

Several researches in scientific literature analyze the theme of Muscular Dystrophy (MD), As well as many others focus on the theme of the Covid-19 pandemic; however, there is a rather limited number of studies that analyse how the pandemic has affected the life of people suffering from MD, especially during the time of the first lockdown in the spring of 2020. The present study has applied a qualitative research design with the aim to investigate how patients with MD have lived the social restrictions imposed for the contagion containment and whether the assistance of associations for their support has contributed to make the participants feel closer or more distant from the spiritual dimension. The analysis involved 12 participants, and they were presented with a semi-structured interview. The data obtained from the interviews have been analysed through a thematic analysis from which 4 thematic areas have emerged: (1) the impact of the pandemic on an emotional level; (2) the illness management and the role of family; (3) the role of the associations; (4) aspects related to spirituality. The crucial role that the closeness of family and the activities promoted remotely by the associations for patients' support has emerged, since they have allowed the participants to feel united by something beyond, to discover new aspects of themselves, to give more value to Life and to move closer to their spiritual dimension.

Keywords: Associations; Covid-19 pandemic; Muscular Dystrophy; Qualitative study; Spirituality.