The impact of newly diagnosed chronic paediatric conditions on parental quality of life

Abstract

Objective: Parental functioning and well-being are important aspects of a family's adaptation to chronic paediatric conditions. This study investigates the effects of diagnosis (cancer vs. diabetes/epilepsy) and time since diagnosis on parental quality of life (PQL).

Methods: 122 parents (66 mothers, 56 fathers), whose children were diagnosed and treated for one chronic disease, filled in the Ulm Quality of Life Inventory for Parents twice within the first three months after the initial diagnosis. The effects of diagnosis and time (1-2 weeks and 2-3 months after diagnosis) on PQL were analysed separately for mothers and fathers.

Results: Parents of a child with cancer consistently reported lower PQL compared with parents of a child with diabetes/epilepsy. Only the fathers' well-being increased significantly within the first three months after the child was diagnosed for a chronic disease. However, in most of the PQL domains there was a persistent impairment within the time-frame of this study. Parents of children with a chronic disease were more satisfied with their family situation than healthy controls. Age of the child was positively correlated with PQL.

Conclusions: A diagnosis of cancer, especially in young children, has a strong negative effect on PQL. Measuring PQL in a preventive approach would help to identify vulnerable parents and to provide psychosocial support in time.