Caregivers of Neuromuscular Patients Living with Tracheostomy during COVID-19 Pandemic: Their Experience
Open accessAbstract
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.
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The COVID-19 pandemic created unprecedented challenges for clinical care and research in neuromuscular disease and chronic respiratory failure patients on home invasive mechanical ventilation, who often felt abandoned.
“The COVID-19 pandemic has created unprecedented challenges for clinical care and research in NMD and CRF in HIMV who often have been feeling abandoned [20, 21], an aspect also found in caregivers [22].”
From Life Experiences in Neuromuscular Tracheotomized Patients in Times of Covid-19 (2023) · cites this paper as [22]
Reduced access to in-person support and healthcare services, as well as increased social isolation, may contribute to these feelings.
“Reduced access to in-person support and healthcare services, as well as increased social isolation, may contribute to these feelings [22, 55].”
From Life Experiences in Neuromuscular Tracheotomized Patients in Times of Covid-19 (2023) · cites this paper as [22]
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- Authors
- Pierucci, P., Volpato, E., Grosso, F., De Candia, M., Casparrini, M., Compalati, E., Pagnini, F., Banfi, P., & Carpagnano, G.
- Affiliations
- Azienda Universitaria Ospedaliera Consorziale - Policlinico Bari (IT)
- Università Cattolica del Sacro Cuore (IT)
- Cardiothoracic Department, Respiratory and Critical Care Unit Bari Policlinic University Hospital, 70121 Bari, Italy
- Don Carlo Gnocchi Foundation (IT)
- Corresponding author
- Pierucci, Paola
- ORCID
- Venue
- Journal of Clinical Medicine
- Publisher
- MDPI AG
- Published
- 2023-01-10
- Volume
- 12
- Issue
- 2
- Pages
- 555
- ISSN
- 2077-0383 (ISSN-L)
- PMC
- PMC9862176
- OpenAlex
- W4315491986
- Cited by
- 6
- References
- 46
- Citations by year
- 2026: 1 · 2025: 3 · 2023: 2
- FWCI
- 2.46
- Type
- journal article
- Language
- en
- Open access
- gold
- doi.org
- Licence
- Locations
- Journal of Clinical Medicine (publishedVersion, cc-by)
- PubMed Central (publishedVersion, cc-by)
- PubMed (publishedVersion)
- Lirias (submittedVersion, cc-by)
- PubliCatt (Università Cattolica del Sacro Cuore) (submittedVersion, cc-by)
- CINECA IRIS Institutional Research Information System (University of Bari Aldo Moro) (submittedVersion, cc-by)
- Topics
- Health Sciences › Health Professions › Pharmacy › Nursing care and research
- Social Sciences › Psychology › Clinical Psychology › COVID-19 and Mental Health
- Health Sciences › Medicine › Pulmonary and Respiratory Medicine › Tracheal and airway disorders
- Keywords
- tracheostomy, neuromuscular disorders, caregiver burden, caregiver experiences, COVID-19 pandemic, caregiver resilience, psychological flexibility, perceived control, loneliness, caregiver isolation, tracheostomy management
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