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

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.

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

“…The COVID-19 pandemic has added additional stress to these persons and may exacerbate feelings of abandonment. Reduced access to in-person support and healthcare services, as well as increased social isolation, may contribute to these feelings [ 22, 55 ]. It is important for individuals to seek out available resources, such as virtual support groups, telehealth services, and mental health services, to help cope with these feelings.…”

“…Indeed, they need to receive comprehensive information on living with HMV, tailored to their needs [14][15][16], especially about adverse events [17].The initial lack of communication has been described as traumatic [18] often when there was a lack of support from qualified medical personnel approaching this delicate period [19]. 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]. Multidisciplinary team care, nutrition, aids, home healthcare, and hospice have become more difficult to obtain and, in some places, unavailable.…”

Psychological Factors Influencing Adherence to NIV in Neuromuscular Patients Dependent on Non Invasive Mechanical Ventilation: Preliminary Results

“…During COVID-19 pandemic waves, the serious impacts of undergoing an urgent tracheotomy for patients affected by neuromuscolar diseases due to poor NIV compliance and/or lack of clinical follow-up have been demonstrated to have an heavy impact on both patients’ and caregivers’ mental health [ 7 , 8 ]. Several factors may influence adherence to NIV.…”