Parental illness intrusiveness in parents of children with neuromuscular disorders.

Background: Pediatric neuromuscular diseases (NMDs) do not only affect patients themselves, they also exert an impact on parents. However, the impact that parents experience on their own personal lives remains largely understudied.

Objective: This study introduced the construct of parental illness intrusiveness in a NMD population by addressing two objectives. First, to increase our insight in the levels of parental intrusiveness in the NMD population, these parents were compared to parents of youth with type 1 diabetes (T1D). Second, we aimed to increase our understanding of parental illness intrusiveness within the NMD sample by exploring its associations with parental demographical characteristics, parental depressive symptoms and quality of life, and disease- and child characteristics.

Methods: A total of 56 parents of youth with a NMD (aged 12-25) and a 2:1 matched sample of parents of youth with T1D completed questionnaires on parental illness intrusiveness, parental depressive symptoms, parental quality of life, and perceived patient physical functioning. For Objective 1, ANOVAs were conducted to compare parents in the NMD sample to parents in the T1D sample. For Objective 2, ANOVAs and correlational analyses were used.

Results: First, parents in the NMD sample reported significantly more illness intrusiveness, but not depressive symptoms as compared to parents in the T1D sample. Second, parental illness intrusiveness correlated positively with parental depressive symptoms and perceived patient physical impairment, and negatively with parental quality of life.

Conclusions: Compared to parents of a child with T1D, parents in the NMD population may experience more impact of their child's disease in their personal life. Parents of youth with higher physical impairment may be particularly at risk for experiencing difficulties among a wide array of personal life domains.