Group intervention for siblings and parents of children with chronic disorders (SIBS-RCT): study protocol for a randomized controlled trial

Background Siblings and parents of children with neurodevelopmental disorders are at risk of mental health problems and poorer family communication. Some group interventions for siblings exist, but few have clearly described parent components and none are considered evidence-based. Methods We are conducting a randomized controlled trial comparing a five-session manual-based group intervention for siblings (aged 8 to 16 years) and parents of children with neurodevelopmental disorders to a 12-week waitlist, called SIBS-RCT. The intervention comprises three separate sibling and parent group sessions and two joint sessions in which each sibling talks to their parent alone. The intervention aims at improving parent-child communication and covers themes such as siblings’ understanding of the neurodevelopmental disorder, siblings’ emotions, and perceived family challenges. Participants are recruited through municipal and specialist health centers across Norway. The primary outcome is sibling mental health. Quality of life and family communication are secondary outcomes. Participants are block-randomized to the intervention or 12-week waitlist in groups of six. Measures are collected electronically at pre- and post-intervention/waitlist, as well as 3, 6, and 12 months post-intervention. The main effect to be examined is the difference between the intervention and waitlist at 12 weeks post. All outcomes will also be examined using growth curve analyses. We plan to include 288 siblings and their parents by the end of 2022. Discussion SIBS-RCT represents a major contribution to the research and practice field towards establishing an evidence-based intervention for siblings. In the event that intervention and waitlist are no different, the impact of SIBS-RCT is still substantial in that we will aim to identify participant subgroups that show positive response and effective components of the SIBS manual by examining group leader adherence as an outcome predictor. This will allow us to continue to re-engineer the SIBS manual iteratively to improve outcomes, and avoid the promotion of a less-than-optimal intervention. Trial registration ClinicalTrials.gov NCT04056884. Registered in August 201

Cross-country psychometric study of the Negative Adjustment Scale to measure siblings’ adjustment to their brother’s or sister’s disability.

The Sibling Perceptions Questionnaire was developed three decades ago (Carpenter & Sahler, 1991) to measure the perceptions of children of having a brother or sister with cancer (siblings). The scale has both a child self-report version and a parent proxy-report version. The instrument has been used with different target groups (including siblings of children with chronic illnesses or disabilities) and adapted in several studies ever since, resulting in the composite Negative Adjustment Scale (Lobato & Kao, 2002) to measure sibling negative adjustment to the condition of the brother or sister. The internal consistency of this scale has been reported in several samples (e.g. Haukeland et al., 2020; Havermans et al., 2011; Lobato & Kao, 2002) and the construct and convergent validity were recently studied (Orm et al., 2021). So far the scale appears to be a reliable and valid instrument, that can be used when studying siblings and evaluating sibling targeted interventions. However, it is yet unclear whether the scale operates the same in samples from different countries and different age groups. Furthermore, previous studies found that parents report higher sibling negative adjustment than siblings do themselves (Guite et al., 2004; Taylor et al., 2001). We will investigate if this difference is found in a Dutch sample of siblings as well