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Impact of the COVID-19 pandemic on neuromuscular rehabilitation setting. Part 2: patients and families’ views on the received health care during the pandemic

This study explored views of users with muscular dystrophies and their caregivers on staff-user relationships and the treatments provided by a Rehabilitation Centre during the pandemic. Patients and relatives were asked to anonymously complete an open-ended questionnaire exploring their views on the...

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Autores principales: Magliano, Lorenza, Citarelli, Giulia, Esposito, Maria Grazia, Torre, Vito, Politano, Luisa
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Pacini Editore Srl 2022
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9237748/
https://www.ncbi.nlm.nih.gov/pubmed/35832506
http://dx.doi.org/10.36185/2532-1900-075
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author Magliano, Lorenza
Citarelli, Giulia
Esposito, Maria Grazia
Torre, Vito
Politano, Luisa
author_facet Magliano, Lorenza
Citarelli, Giulia
Esposito, Maria Grazia
Torre, Vito
Politano, Luisa
author_sort Magliano, Lorenza
collection PubMed
description This study explored views of users with muscular dystrophies and their caregivers on staff-user relationships and the treatments provided by a Rehabilitation Centre during the pandemic. Patients and relatives were asked to anonymously complete an open-ended questionnaire exploring their views on these aspects. Fifty-four patients and 40 caregivers gave their informed consent and participated in the survey. Fifty-three patients were adults, 28% suffering from Duchenne/Becker muscular dystrophy. Patients reported 269 comments on health care services provided during the pandemic, 132 (49%) concerning positive aspects and 137 (51%) negative aspects. The prompt restart of the rehabilitation therapies and the staff closeness over the pandemic were the practical aspects most frequently appreciated (46.9%), while closer family contacts and the perception of being able to rely on the Centre’s constant support were the most cited psychological aspects (53.1%). Architectural barriers, difficulties in accessing public health services, economic difficulties, and lack of support from welfare and other agencies were the practical critical points most frequently reported (89%). In addition, social isolation, and loneliness due to fear of contagion were the most negative psychological aspects (10.1%). As regard the caregivers’ views, participants reported 151 comments. Of these, 86 (56.9%) were positive and 65 (43.1%) were negative. Among the positive aspects, the psychological ones – such as closer family contacts, not feeling abandoned and counting on the constant Centre’s professional support prevailed (53.5%). As for the negative aspects, most caregivers (92.6%) believe that the pandemic exacerbated their financial and bureaucratic difficulties, particularly in poorer families.
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spelling pubmed-92377482022-07-12 Impact of the COVID-19 pandemic on neuromuscular rehabilitation setting. Part 2: patients and families’ views on the received health care during the pandemic Magliano, Lorenza Citarelli, Giulia Esposito, Maria Grazia Torre, Vito Politano, Luisa Acta Myol Original Article This study explored views of users with muscular dystrophies and their caregivers on staff-user relationships and the treatments provided by a Rehabilitation Centre during the pandemic. Patients and relatives were asked to anonymously complete an open-ended questionnaire exploring their views on these aspects. Fifty-four patients and 40 caregivers gave their informed consent and participated in the survey. Fifty-three patients were adults, 28% suffering from Duchenne/Becker muscular dystrophy. Patients reported 269 comments on health care services provided during the pandemic, 132 (49%) concerning positive aspects and 137 (51%) negative aspects. The prompt restart of the rehabilitation therapies and the staff closeness over the pandemic were the practical aspects most frequently appreciated (46.9%), while closer family contacts and the perception of being able to rely on the Centre’s constant support were the most cited psychological aspects (53.1%). Architectural barriers, difficulties in accessing public health services, economic difficulties, and lack of support from welfare and other agencies were the practical critical points most frequently reported (89%). In addition, social isolation, and loneliness due to fear of contagion were the most negative psychological aspects (10.1%). As regard the caregivers’ views, participants reported 151 comments. Of these, 86 (56.9%) were positive and 65 (43.1%) were negative. Among the positive aspects, the psychological ones – such as closer family contacts, not feeling abandoned and counting on the constant Centre’s professional support prevailed (53.5%). As for the negative aspects, most caregivers (92.6%) believe that the pandemic exacerbated their financial and bureaucratic difficulties, particularly in poorer families. Pacini Editore Srl 2022-06-30 /pmc/articles/PMC9237748/ /pubmed/35832506 http://dx.doi.org/10.36185/2532-1900-075 Text en ©2022 Gaetano Conte Academy - Mediterranean Society of Myology https://creativecommons.org/licenses/by-nc-nd/4.0/This is an open access article distributed in accordance with the CC-BY-NC-ND (Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International) license. The article can be used by giving appropriate credit and mentioning the license, but only for non-commercial purposes and only in the original version. For further information: https://creativecommons.org/licenses/by-nc-nd/4.0/deed.en
spellingShingle Original Article
Magliano, Lorenza
Citarelli, Giulia
Esposito, Maria Grazia
Torre, Vito
Politano, Luisa
Impact of the COVID-19 pandemic on neuromuscular rehabilitation setting. Part 2: patients and families’ views on the received health care during the pandemic
title Impact of the COVID-19 pandemic on neuromuscular rehabilitation setting. Part 2: patients and families’ views on the received health care during the pandemic
title_full Impact of the COVID-19 pandemic on neuromuscular rehabilitation setting. Part 2: patients and families’ views on the received health care during the pandemic
title_fullStr Impact of the COVID-19 pandemic on neuromuscular rehabilitation setting. Part 2: patients and families’ views on the received health care during the pandemic
title_full_unstemmed Impact of the COVID-19 pandemic on neuromuscular rehabilitation setting. Part 2: patients and families’ views on the received health care during the pandemic
title_short Impact of the COVID-19 pandemic on neuromuscular rehabilitation setting. Part 2: patients and families’ views on the received health care during the pandemic
title_sort impact of the covid-19 pandemic on neuromuscular rehabilitation setting. part 2: patients and families’ views on the received health care during the pandemic
topic Original Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9237748/
https://www.ncbi.nlm.nih.gov/pubmed/35832506
http://dx.doi.org/10.36185/2532-1900-075
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