Abstract

Background: Neuromuscular disease(NMD) patients using invasive mechanical ventilation (IMV) and their caregivers may have experienced complex management at home during the Covid-19 pandemic.Aim: to explore the experiences of those referring to Bari and Milan centres.Methods:perspectives semi-structured interviews were performed. Connor and Davidson Resilience Scale, to detect resilience; Acceptance and Action Questionnaire-II, to detect flexibility; State-Trait Anxiety Inventory, to detect trait anxiety; Langer Mindfulness Scale, to measure dispositional mindfulness; Zarit Burden Interview to detect caregiver’s burden were administered.Descriptive analyses, correlations and qualitative analyses were then conducted. Results: Twenty-two patients [50% female,Mean age=50.2(SD=21.2)] and 52 caregivers [62.3%F, Mean age 52.2 (SD=1.22)] took part to the study. Among patients, those with high levels of dispositional mindfulness are those with higher resilience(r=0.717,p=0.007).The more resilient the carers are, the more psychologically flexible (r=0.380,p=0.014) and able to cope adaptively with the emergency (r=0.378,p<0.006). Similarly, the higher the perceived control is, the more resilient they are (r=0.897,p<.001).Main emotions:fear of contagion (19 patients),reduction of contacts,isolation and loneliness (15 families). Tracheostomy is seen as a lifesaver or a condemnation.The relationship with health professionals moves from satisfaction to abandonment and the idea of lack of preparation of the ED personnel.Conclusion: resilience,flexibility,anxiety,mindfulness combined with previous experiences reinforce ways of manging IMV at home even during COVID19 pandemic.