Examining emotional and behavioural trajectories in siblings of children with life-limiting conditions

Abstract

Abstract Background Healthy siblings of children with life-limiting conditions often experience emotional and behavioural struggles over the course of the ill child’s condition(s). Resources to support these siblings are limited due to a lack of understanding about their needs. Therefore, this study was designed to characterize the emotional and behavioural trajectories among 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 bio-psychosocial health outcomes of parents and siblings. Linear mixed effect models were used to assess the association between siblings’ emotions and behaviour trajectories and selected demographic variables. Siblings’ emotions and behaviour were measured with Child Behaviour Checklist (CBCL). Results Siblings’ mean age was 11.2 years at baseline and Internalizing, Externalizing, and Total Behaviour Problems mean scores were within normal ranges across time. However, 7–25% of 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, siblings had higher levels of Internalizing and Externalizing Problems compared with siblings who participated more than one year after treatment was sought. Conclusion Healthy siblings experience emotional and behavioural problems early in the child’s disease trajectory. Although these problems improve with time, our findings show that brothers and sisters experience different types of challenges. Therefore, timely support for siblings is important as they navigate through the uncertainties and challenges.