Examining Emotional and Behavioural Trajectories in Siblings of Children with Life-Threatening Conditions

Abstract Background Healthy siblings of children with life-limiting conditions often experience emotional and behavioral struggles over the course of the ill child’s condition(s). Resources to support these siblings are limited due to the lack of understanding about the needs of siblings. Therefore, this study was designed to characterize the emotional and behavioral trajectories of siblings of children with progressive, life-limiting genetic, metabolic, or neurological conditions over a 12-month observation period. Methods Seventy siblings were recruited from a large survey-based study (Charting the Territory) that examined the biopsychosocial health outcomes of parents and siblings. Linear mixed effect models were used to assess the associations between siblings’ emotions and behavior trajectories and selected demographic variables. Siblings’ emotions and behaviors were measured with Child Behavior Checklist (CBCL). Results The mean age of the siblings was 11.2 years at baseline, and the Internalizing, Externalizing, and Total Behavior Problems mean scores were within normal ranges across time. However, 7–25% of the siblings had scores within the clinical range. Brothers had higher levels of internalizing problems than sisters, whereas sisters had higher levels of externalizing problems than brothers. When treatment was first sought for the ill child less than a year prior to study participation, the siblings had higher levels of internalizing and externalizing problems than did the siblings who participated more than one year after treatment was sought. Conclusion Healthy siblings experience emotional and behavioral problems early in the child’s disease trajectory. Although these problems improve with them, our findings show that brothers and sisters experience different types of challenges. Therefore, timely support for siblings is important as they navigate through these uncertainties and challenges.