The impact of leukodystrophies on parents' lives

Objective Leukodystrophies are a group of genetically determined neurological disorders affecting the white matter of the central nervous system and they have a profound impact on the daily lives of patients and their caregivers. However, only a few studies have analyzed the psychological experiences of parents of children with these conditions. The main aims of the present study were to assess parental burden and parenting stress in caregivers and to evaluate the relationships between parents' experiences and the perceived clinical characteristics of their children.Methods Forty-one parents of children and young adults diagnosed with leukodystrophies completed an online survey specifically designed to assess: the characteristics of parents and their children (i.e., current abilities, perceived severity level, and possible regression) and the psychological experiences of parents (i.e., caregiver burden, parenting stress, and perceived social support).Results A significant proportion of parents who participated in the study were at risk of experiencing caregiver burden (63%) or parenting stress (49%). Regression analysis showed that perceived social support and the degree of regression (i.e., loss of competence) manifested by the children and young adults emerged as significant factors in determining caregiver burden. However, neither the severity of the child's condition nor the age of the child/young adult appeared to be a determining factor in predicting parental burden or parenting stress.Conclusions This study highlights the importance of considering parental well-being in both research and clinical practice, particularly for parents of children with progressive conditions.