Parents of chronically ill children. Quality of life, psychosocial burden, and needs

Wiedebusch S, Muthny FA

Zusammenfassung

Background. The aim of this study was to examine parents' health-related quality of life, psychosocial burden, and needs with regard to different paediatric chronic illness groups. Material and Methods. In a cross-sectional study, 285 parents (167 mothers, 118 fathers) having a child suffering from juvenile idiopathic arthritis (N=161), type 1 diabetes (N=69), or haemophilia (N=55) completed a questionnaire concerning health-related quality of life, psychosocial burden, and needs. Results. On average, parents reported moderate impairment of their quality of life. Higher health-related quality of life correlated with longer illness duration and lower perceived impairment of the ill child. Parents' quality of life, psychosocial burden, and needs differed significantly among the three illness groups (p