Sibling self-report, parental proxies, and quality of life: the importance of multiple informants for siblings of a critically ill child

Assessment of quality of life (QoL) has thus far been a neglected approach in describing psychological adaptation in siblings of seriously ill children. The present results concern differences and correspondences between parent- and child-reported QoL in siblings of pediatric cancer patients, at 1 month and 2 years after the diagnosis in the ill child. A total of 83 Siblings aged 7-18 participated in the study at 1 month after the diagnosis; 57 of these siblings (69%) participated in follow-up assessment 24 months later. The parent and child form of the TNO-AZL Children's Quality of Life questionnaire (TACQoL) and the Child Behaviour Check List (CBCL) and Youth Self-Report (YSR) were used to assess QoL and behavioral problems in siblings. The General Health Questionnaire (GHQ) was used to assess parent mental health. Mean differences, correspondences between informants, and partial correlations with parent mental health were assessed at both measurement occasions. Correspondence between parent and child was low to moderate for most domains at both assessments. Low agreement was observed on several domains in our study group compared to reference data. Young siblings (ages 7-11) reported significantly more physical and motor problems at 1 and 24 months and less positive emotions at 24 months than their parents. Adolescent siblings reported more physical complaints at 1 month and more emotional and behavior problems (YSR) at both assessments, but also reported higher social QoL than their parents at 24 months. Parent psychological distress was negatively correlated with parent-reported physical QoL in the sibling. The findings suggest that siblings of children with cancer experience a more serious burden from the illness than is perceived by the parents. Physical complaints and emotional problems remain mostly unnoticed, although distressed parents are more focused on the child's physical health. These results imply that assessment of self-reported well-being is especially relevant in siblings of a critically ill child, to obtain a realistic image of siblings' QoL. Further studies on sibling QoL are needed