Palazzo Lorenza, Pompele Sara, Rossi Marta, Rossi Gabriella, Spinoglio Simona, Testoni Ines
Department of Philosophy, Sociology, Pedagogy and Applied Psychology (FISPPA), University of Padova, 35131 Padova, Italy.
Unione Italiana Lotta Alla Distrofia Muscolare (UILDM) - "G. Bergna" section of Monza and Brianza, 20900 Monza e Brianza (MB), Italy.
Pastoral Psychol. 2022;71(2):217-231. doi: 10.1007/s11089-022-00997-2. Epub 2022 Feb 3.
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.
科学文献中的几项研究分析了肌肉萎缩症(MD)的主题,还有许多研究聚焦于新冠疫情主题;然而,分析疫情如何影响肌肉萎缩症患者生活的研究数量相当有限,尤其是在2020年春季首次封锁期间。本研究采用了定性研究设计,旨在调查肌肉萎缩症患者如何经历为控制疫情传播而实施的社会限制措施,以及协会提供的支持援助是否有助于让参与者感觉与精神层面更亲近或更疏远。该分析涉及12名参与者,并对他们进行了半结构化访谈。通过主题分析对访谈获得的数据进行了分析,从中出现了4个主题领域:(1)疫情在情感层面的影响;(2)疾病管理与家庭的作用;(3)协会的作用;(4)与精神性相关的方面。家庭的亲密关系以及协会为支持患者而远程开展的活动所起到的关键作用显现出来,因为它们让参与者感受到超越自身的某种东西将大家凝聚在一起,发现自身新的方面,更加珍视生命,并更接近他们的精神层面。