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.

Pierucci, P., Volpato, E., Grosso, F., De Candia, M. L., Casparrini, M., Compalati, E., Pagnini, F., Banfi, P., Carpagnano, G. E., Caregivers of Neuromuscular Patients Living with Tracheostomy during COVID-19 Pandemic: Their Experience, <<JOURNAL OF CLINICAL MEDICINE>>, 2023; 12 (2): 1-17. [doi:10.3390/jcm12020555] [https://hdl.handle.net/10807/223271]

Caregivers of Neuromuscular Patients Living with Tracheostomy during COVID-19 Pandemic: Their Experience

Volpato, Eleonora;Grosso, Francesca;Pagnini, Francesco;
2023

Abstract

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.
Inglese
Pierucci, P., Volpato, E., Grosso, F., De Candia, M. L., Casparrini, M., Compalati, E., Pagnini, F., Banfi, P., Carpagnano, G. E., Caregivers of Neuromuscular Patients Living with Tracheostomy during COVID-19 Pandemic: Their Experience, <<JOURNAL OF CLINICAL MEDICINE>>, 2023; 12 (2): 1-17. [doi:10.3390/jcm12020555] [https://hdl.handle.net/10807/223271]
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Utilizza questo identificativo per citare o creare un link a questo documento: https://hdl.handle.net/10807/223271
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