Associazione Centro Gaetano Torre per Le Malattie Muscolari, Unità di Ricerca, Marano di Napoli, Naples, Italy.
Department of Psychology, University of Campania "Luigi Vanvitelli", Caserta, Italy.
Acta Myol. 2021 Sep 30;40(3):132-134. doi: 10.36185/2532-1900-054. eCollection 2021 Sep.
The outbreak of COVID-19 has forced the health care system to undergo profound rearrangements in services and facilities, especially during the periods of lockdown. In this context, inpatient and outpatient services had to rethink and reorganize their activities to meet the needs of severely disabled patients, as those affected by Muscular Dystrophies (MDs). We present the preliminary results of a survey aiming to explore the staff views on the changes in the care provided by the Gaetano Torre Rehabilitation Centre, and, the impact of these changes on professionals, patients and their families. The survey was carried out using an open-ended questionnaire including six-items, on the practical and psychological aspects emerged during the pandemic in relation to the healthcare services provided by the Centre and to the patients/caregivers conditions. The participants, most of them physiotherapists, highlighted 169 aspects emerging in the pandemic, 48.5% referring to the resources used to cope with critical issues and 51.5% concerning the difficulties encountered. Emotional aspects prevailed on practical aspects both in resources (52.4 47.6%) and in difficulties (57.5 42.5%) categories. In particular, with regard to patients' resources, psychological benefits, despite the burden, were greater than practical ones (87 13%), in the form of improved intra-family relationships, feeling more cared for, and satisfaction for the received care. As for the patients' relatives, the staff indicated more resources than difficulties (72.8 17.2%). Among the former, 75% concerned the emotional sphere, such as the perception of having a point of reference even in such a difficult time.
COVID-19 的爆发迫使医疗保健系统对服务和设施进行深刻的调整,尤其是在封锁期间。在这种情况下,住院和门诊服务必须重新思考和组织其活动,以满足严重残疾患者的需求,例如患有肌肉萎缩症 (MD) 的患者。我们提出了一项调查的初步结果,旨在探讨工作人员对 Gaetano Torre 康复中心提供的护理变化的看法,以及这些变化对专业人员、患者及其家属的影响。该调查使用开放式问卷进行,共包括六个项目,涉及与中心提供的医疗服务以及患者/照顾者的状况相关的大流行期间出现的实际和心理方面。参与者主要是物理治疗师,他们强调了大流行期间出现的 169 个方面,其中 48.5%涉及用于应对关键问题的资源,51.5%涉及遇到的困难。在资源(52.4%对 47.6%)和困难(57.5%对 42.5%)类别中,情感方面均超过了实际方面。特别是,就患者的资源而言,尽管负担沉重,但心理收益大于实际收益(87%对 13%),表现为改善了家庭内部关系、更受关注和对所接受的护理感到满意。就患者的亲属而言,工作人员表示资源多于困难(72.8%对 17.2%)。其中,75%涉及情感领域,例如即使在如此困难的时期,也有一个参考点的感觉。