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

Abstract

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 2019

Programs to Prepare Siblings for Future Roles to Support Their Brother or Sister with a Neurodevelopmental Disability: a Scoping Review

“…A questionnaire was completed by parents and siblings to measure family communication [ 59 ]. 12.70 (2.70, 8−21) Learning problems, intellectual disability, autism spectrum disorder, attention deficit hyperactivity disorder, developmental delay, or Down Syndrome Fjermestad et al 2020 [ 60 ] (Norway) To promote sibling well-being. Randomized controlled trial Questionnaires and interview.…”

“…There were 27 programs that included parental involvement, for example, by completing questionnaires [ 34 , 41 , 77 , 88 , 102 , 123 , 127 , 138 ] or they were trained to be observers of their child’s performance [ 37 ]. Some parents were participants in the program [ 14 , 15 , 56 , 60 , 68 , 107 , 139 , 140 , 142 ], with parent training programs [ 139 ], information sessions [ 142 ], parent-specific sessions with some parent-sibling sessions [ 14 , 56 , 60 , 68 ], or as part of a family training program [ 15 , 107 , 130 ].…”

“…There were 35 studies that described the program developers, with 17 programs focused on providing knowledge or skill development for siblings [ 12 , 14 , 15 , 21 , 25 ••, 39 , 60 , 63 , 67 , 71 , 77 , 84 , 102 , 116 , 123 , 125 , 140 , 142 ] and 17 studies that aimed to train siblings to apply skills with their sibling with NDD [ 32 , 41 , 46 , 47 , 54 , 70 , 87 , 88 , 96 , 126 , 128 , 130 , 134 – 138 ]. For programs that aimed to provide knowledge or skill development for the siblings, the developers of the program were primarily from the study authors [ 14 , 21 , 60 , 84 ] or organizations that focused to support siblings of individuals with disabilities such as the Sibling Leadership Network in the USA [ 25 ••] or Sibs in the UK [ 71 ]. There were no studies that explicitly described whether siblings of individuals with NDD were part of the team of developers and the roles that they might have had.…”

Hospital Support for Siblings of Children With Illness in Japan

“…Additionally, more than half of the participants in this study answered that they intentionally bring up siblings in conversation with their parents to provide indirect siblings support. Meanwhile, intervention programs for siblings are increasing ( 30 ), involving parents for support, and parent-child communication intervention studies are gradually increasing ( 31 , 32 ). Moreover, siblings desire honest and open family communication ( 13 ).…”

Predictors of Suicide Attempts of Individuals with Autism and Their Siblings

“…Furthermore, most past studies concerning the siblings of individuals with ASD have focused on infant siblings [11]. Aside from friendships and marriages/partnerships, sibling relationships are often the longest lasting of an individual's bonds with their relatives; although not all sibling relationships are close, some siblings may actively dislike one another, and in some cases cousins or other familial bonds may be closer than those between siblings in the same family [12]. e presence of an individual on the spectrum within a household can impact the adjustment and mental health of all members of that family, including siblings.…”