Family and Caregiver Quality of Life in Pediatric Neuromuscular Diseases: Psychosocial and Disease-related Predictors

Objective: This study aimed to explore family and caregiver's quality of life, identifying psychosocial factors related to it. Method: A cross-sectional quantitative study was carried out with 153 caregivers of children and adolescents with various neuromuscular diagnosis. Caregivers responded to the PedsQL FIM, PAS, MOS, and FACES III scales. Results: Medium to low levels of quality of life (QoL) were found in caregivers of children with neuromuscular diseases. Caregivers reported low perceived family resources, but most of them presented good psychological adaptation and social support. QoL differences were found according to child's functional dependence and access to pharmacological treatment. Multiple regression analysis showed a model for Family QoL explained by family resources, caregiver's age, social support, and child's functional dependence. Conclusion: Families had better levels of QoL because they have a higher perception of their family resources, caregivers are older, have more functional social support, and the child has a higher degree of dependency. Results emphasized the need to adopt a psychological and family approach in the management of neuromuscular diseases.