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Caregivers of Neuromuscular Patients Living with Tracheostomy during COVID-19 Pandemic: Their Experience
Background: During a pandemic, tracheostomy management in neuromuscular disease (NMD) patients can be complex. Methods: Using a multicentre, multiple case study approach, we sought perspectives through semi-structured interviews via hybrid quali-quantitative analysis. The qualitative analysis involv...
Autores principales: | , , , , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
MDPI
2023
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9862176/ https://www.ncbi.nlm.nih.gov/pubmed/36675483 http://dx.doi.org/10.3390/jcm12020555 |
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author | Pierucci, Paola Volpato, Eleonora Grosso, Francesca De Candia, Maria Luisa Casparrini, Massimo Compalati, Elena Pagnini, Francesco Banfi, Paolo Carpagnano, Giovanna Elisiana |
author_facet | Pierucci, Paola Volpato, Eleonora Grosso, Francesca De Candia, Maria Luisa Casparrini, Massimo Compalati, Elena Pagnini, Francesco Banfi, Paolo Carpagnano, Giovanna Elisiana |
author_sort | Pierucci, Paola |
collection | PubMed |
description | Background: During a pandemic, tracheostomy management in neuromuscular disease (NMD) patients can be complex. Methods: Using a multicentre, multiple case study approach, we sought perspectives through semi-structured interviews via hybrid quali-quantitative analysis. The qualitative analysis involved a semi-structured interview and the quantitative analysis the completion of a battery of questionnaires. Aim: To investigate the caregivers’ experiences, burden and beliefs regarding tracheostomy during the Italian COVID-19 pandemic. The following instruments were administered: Connor and Davidson Resilience Scale (CD-RISC-25); Acceptance and Action Questionnaire-II (AAQ-II); State-Trait Anxiety Inventory (STAI); Langer Mindfulness Scale (LMS); Zarit Burden Interview (ZBI). Results: Fifty-three caregivers (62.3% female, mean age 52.2 (SD = 18.2)) participated in the study. The more resilient the carers, the more they were psychologically flexible (r = 0.380, p = 0.014) and able to cope adaptively with the emergency (r = 0.378, p < 0.006). Similarly, perceived control was higher the more resilient they were (r = 0.897, p < 0.001). The main emotions emerging were isolation and loneliness (15; 34.88%). The perception of tracheostomy meant that it could be seen as a lifesaver or as a condemnation. Similarly, the relationship with health professionals moves from satisfaction to a feeling of abandonment over the course of the pandemic. Conclusions: These findings offer a unique opportunity to understand the point of view of caregivers of NMD patients living with tracheotomy during the COVID-19 pandemic, when going to the hospital may have been hampered. |
format | Online Article Text |
id | pubmed-9862176 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2023 |
publisher | MDPI |
record_format | MEDLINE/PubMed |
spelling | pubmed-98621762023-01-22 Caregivers of Neuromuscular Patients Living with Tracheostomy during COVID-19 Pandemic: Their Experience Pierucci, Paola Volpato, Eleonora Grosso, Francesca De Candia, Maria Luisa Casparrini, Massimo Compalati, Elena Pagnini, Francesco Banfi, Paolo Carpagnano, Giovanna Elisiana J Clin Med Article Background: During a pandemic, tracheostomy management in neuromuscular disease (NMD) patients can be complex. Methods: Using a multicentre, multiple case study approach, we sought perspectives through semi-structured interviews via hybrid quali-quantitative analysis. The qualitative analysis involved a semi-structured interview and the quantitative analysis the completion of a battery of questionnaires. Aim: To investigate the caregivers’ experiences, burden and beliefs regarding tracheostomy during the Italian COVID-19 pandemic. The following instruments were administered: Connor and Davidson Resilience Scale (CD-RISC-25); Acceptance and Action Questionnaire-II (AAQ-II); State-Trait Anxiety Inventory (STAI); Langer Mindfulness Scale (LMS); Zarit Burden Interview (ZBI). Results: Fifty-three caregivers (62.3% female, mean age 52.2 (SD = 18.2)) participated in the study. The more resilient the carers, the more they were psychologically flexible (r = 0.380, p = 0.014) and able to cope adaptively with the emergency (r = 0.378, p < 0.006). Similarly, perceived control was higher the more resilient they were (r = 0.897, p < 0.001). The main emotions emerging were isolation and loneliness (15; 34.88%). The perception of tracheostomy meant that it could be seen as a lifesaver or as a condemnation. Similarly, the relationship with health professionals moves from satisfaction to a feeling of abandonment over the course of the pandemic. Conclusions: These findings offer a unique opportunity to understand the point of view of caregivers of NMD patients living with tracheotomy during the COVID-19 pandemic, when going to the hospital may have been hampered. MDPI 2023-01-10 /pmc/articles/PMC9862176/ /pubmed/36675483 http://dx.doi.org/10.3390/jcm12020555 Text en © 2023 by the authors. https://creativecommons.org/licenses/by/4.0/Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (https://creativecommons.org/licenses/by/4.0/). |
spellingShingle | Article Pierucci, Paola Volpato, Eleonora Grosso, Francesca De Candia, Maria Luisa Casparrini, Massimo Compalati, Elena Pagnini, Francesco Banfi, Paolo Carpagnano, Giovanna Elisiana Caregivers of Neuromuscular Patients Living with Tracheostomy during COVID-19 Pandemic: Their Experience |
title | Caregivers of Neuromuscular Patients Living with Tracheostomy during COVID-19 Pandemic: Their Experience |
title_full | Caregivers of Neuromuscular Patients Living with Tracheostomy during COVID-19 Pandemic: Their Experience |
title_fullStr | Caregivers of Neuromuscular Patients Living with Tracheostomy during COVID-19 Pandemic: Their Experience |
title_full_unstemmed | Caregivers of Neuromuscular Patients Living with Tracheostomy during COVID-19 Pandemic: Their Experience |
title_short | Caregivers of Neuromuscular Patients Living with Tracheostomy during COVID-19 Pandemic: Their Experience |
title_sort | caregivers of neuromuscular patients living with tracheostomy during covid-19 pandemic: their experience |
topic | Article |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9862176/ https://www.ncbi.nlm.nih.gov/pubmed/36675483 http://dx.doi.org/10.3390/jcm12020555 |
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