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.
Highlights
Muscular Dystrophy (MD) is a recessive illness linked to the X chromosome and it is characterized by a progressive loss of functional muscular mass and by the consequent substitution of fibrous tissue, which contributes to create an association with different
The Duchenne Muscular Dystrophy (DMD) occurs as a consequence of mutations in the gene that codifies for the dystrophin protein, which leads to the absence or to a defect in such a protein that results in a progressive muscular degeneration (Bushby et al, 2009)
The main emotions reported by the participants were sufferance, boredom, sadness, frustration, and rage; for many of them it was challenging to be without their loved ones whom they have greatly missed, as well as the fact of not having the possibility to freely go out of their home or having to renounce to many aspects of their lives since they did not agree with some decisions that have been made during the lockdown
Summary
Muscular Dystrophy (MD) is a recessive illness linked to the X chromosome and it is characterized by a progressive loss of functional muscular mass and by the consequent substitution of fibrous tissue, which contributes to create an association with different. The average age during which a person receives a diagnosis is included between 4 and 5 years of age, when these children’s physical ability significantly diverges from the one of their peers, event thought sometimes the first symptoms are noticed at 2 years of age or even before (Ross & Clarke, 2017). In literature a significant psychological impact of the Covid-19 pandemic has been highlighted: on one hand it has caused some serious threats to people’s physical health and life, but on the other it has triggered a vast variety of psychological problems, such as panic disorder, anxiety, and depression (Cantelmi et al, 2021; Qiu et al, 2020)
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