Life Experiences in Neuromuscular Tracheotomized Patients in Times of Covid-19

Journal of Neuromuscular Diseases · 8 authors, 4 centres

AI SUMMARY

FIDELITY 100%

POPULATION22 patients with neuromuscular diseases and chronic respiratory failure living with tracheostomy and home invasive mechanical ventilation in Italy

INTERVENTION

COMPARISON

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AGENT 01 · STRUCTURED SUMMARY

TRACE TO SOURCE

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TL;DR

This case series explored the experiences of 22 neuromuscular disease patients living with tracheostomy and home invasive mechanical ventilation during the COVID-19 pandemic in Italy using validated psychological scales and qualitative interviews.

Full summary

1,054 CHARS

This cross-sectional case series recruited 22 patients with neuromuscular diseases receiving home invasive mechanical ventilation through tracheostomy from two Italian centres during the COVID-19 pandemic. Participants completed the CD-RISC-25, AAQ-II, STAI, and LMS, and a subset provided semi-structured interviews analysed thematically. Participants had a mean age of 50.2 years (SD=21.2), were 50% female, and had a mean disease duration of approximately 10 years. The dominant reported emotion was fear of contagion (19 patients, 86.36%). Qualitative analysis identified four themes: emotions, challenges and difficulties, relationships, and satisfaction, with abandonment and isolation being recurrent. Limitations include a small sample from only two centres, absence of quality-of-life assessment, lack of clinical data such as blood gas analysis, and inability to meet participants in person. These findings suggest mindfulness-based strategies may support resilience in ventilator-dependent neuromuscular patients during healthcare disruptions.

PICO

PPOPULATION

22 patients with neuromuscular diseases and chronic respiratory failure living with tracheostomy and home invasive mechanical ventilation in Italy

OOUTCOME

Psychological experiences including resilience, mindfulness, anxiety, acceptance, and qualitative themes related to tracheostomy management during COVID-19

STUDY TYPE

case_report

SPECIALTY

pulmonology

SUMMARISED BY

AI pipeline

FIDELITY CHECK

100% · A

ORIGINAL PAPER

PMC10357166

Life Experiences in Neuromuscular Tracheotomized Patients in Times of Covid-19

Journal of Neuromuscular Diseases

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ABSTRACT

Background: The management of tracheotomy at home can be very complex, affecting the patient’s quality of life. Objectives: This case series study aimed to explore the experiences of patients affected by neuromuscular diseases (NMD) concerning tracheostomy and Invasive Mechanical Ventilation (IMV) management at home during the COVID-19 health emergency in Italy. Methods: Semi-structured interviews and the following instruments were used: Connor and Davidson Resilience Scale (CD-RISC-25); Acceptance and Action Questionnaire-II (AAQ-II); State-Trait Anxiety Inventory (STAI); Langer Mindfulness Scale (LMS). Descriptive analyses, correlations, and qualitative analyses were carried out. Results: 22 patients [50% female, mean age = 50.2 (SD = 21.2)] participated in the study. Participants who showed high levels of dispositional mindfulness in terms of novelty-seeking ( r = 0.736, p = 0.013) and novelty production ( r = 0.644, p = 0.033) were those with higher resilience. The main emotion that emerged was the fear of contagion (19 patients, 86.36%), due to the previous fragile condition, leading to a significant sense of abandonment. The tracheostomy’s perception is seen in extremes as a lifesaver or a condemnation. The relationship with the health professionals moves from satisfaction to a feeling of abandonment with a lack of preparation. Conclusions: The relationship between resilience, flexibility, state anxiety and dispositional mindfulness offers ways to reinforce tracheostomy management at home, even in critical periods when going to the hospital may be difficult.

CITATION EXPORT

Eleonora Volpato, Paola Pierucci, Maria Luisa De Candia et al.. Life Experiences in Neuromuscular Tracheotomized Patients in Times of Covid-19. Journal of Neuromuscular Diseases. (2023). https://doi.org/10.3233/JND-221597

AUTHORS

8 · 4 CENTRES

Eleonora Volpato, Paola Pierucci, Maria Luisa De Candia, Massimo Casparrini, Valeria Volpi, Francesco Pagnini, Giovanna Elisiana Carpagnano, Paolo Banfi

aDepartment of Psychology, Università Cattolica del Sacro Cuore, Milan, Italy
bIRCCS Fondazione Don Carlo Gnocchi, Milan, Italy
cCardiothoracic Department, Respiratory and Critical care Unit Bari Policlinic University Hospital, B. Section of Respiratory Diseases, Department of Basic Medical Science Neuroscience and Sense Organs, University of Bari ‘Aldo Moro’, Bari, Italy
dDepartment of Psychology, Harvard University, Cambridge, MA, USA