SIBS-ONLINE: Pilot of an online psychosocial program for siblings and parents of patients with severe neurological impairments

Brief description: SIBS-ONLINE is an online, cognitive behavioural therapy based intervention for siblings and parents of individuals with chronic illness. It was developed in 2023 by a team of Norwegian researchers and underwent a randomised controlled trial. Delivery: SIBS-ONLINE consists of six online sessions delivered over six weeks (i.e., one session per week for each participant). Each session will range from 20-60 minutes long. SIBS-ONLINE is delivered on a secure, password-protected video-conferencing platform (e.g. Microsoft Teams or Zoom). Therefore, sibling and parent participants can join from anywhere in Australia. Materials used: As recommended by the SIBS-ONLINE developers, the sibling and parent group sessions will have no more than 6 sibling-parent dyads. Depending on recruitment, we will aim to join participants whose family member has the same or similar diagnosis. A standardised manual developed by the Norwegian team (and translated to English) will be followed by the group leaders during the sessions. The manual describes the purpose and structure of each SIBS-ONLINE session, the role of each group leader in facilitating and strategies to encourage productive conversation and troubleshoot common issues that may arise. Parents and siblings will engage in four sessions (session 1, 2, 4 and 6) separately from their family member in sibling and parent groups. The sibling sessions will focus on discussing their emotions, thoughts, and feelings about their sibling’s developmental and epileptic encephalopathy (DEE) or other severe neurological condition and writing down questions they have about those illnesses for their parents. The parent sessions focus on communication training, using video examples of sibling-parent dialogues and open-exploratory communication as basis for discussion. Parent sessions also comprise psychoeducation about sibling challenges, and introduction to cognitive-behavioural principles about emotional coping. Each group’s first session will involve an introduction to the intervention and other participants in their respective groups. This is the shortest session, at around 20 minutes. For siblings, the second session will focus on learning about their siblings’ illness, sharing thoughts and writing any question(s) they have for their parents. For parents, the second session will overview and provide information about the intervention as well as exercises which will encourage parents to listen, explore, and validate the siblings’ thoughts about the disorder. A week after each group has had their separate second session, a joint session will be conducted with parents and siblings in breakout rooms. The joint sessions will incorporate integrated sibling-parent dialogues in which siblings present their questions and, in turn, parents practise communication skills learned in initial session. Group leaders will intermittently join these conversations and provide each parent with personalised feedback on their communication skills. A week after the joint session, parents and siblings will reconvene in their groups for a third separate session. Siblings will focus on challenging emotions and feelings they have about their brother/sisters’ illness and writing them down to express to their parents. Parents will focus on listening, exploring, and validating emotional challenges. A second joint session will then be held a week later where the siblings present their challenges to the parents who further practise their learned communication skills. A final, sixth sessions will be held to conclude the program with all the siblings and parents together. Group leaders will recap what they have learnt and achieved through the program. Siblings and parents will have the opportunity to ask questions and provide feedback about the program as well. Who will deliver the program?: The program is administered by two group leaders, and a third group leader will be present to manage any significant distress that arises. Group leaders will be students or researchers who have received comprehensive training in how to deliver SIBS-ONLINE as well as Mental Health First Aid training. The third group leaders will be a senior researcher or clinician with experience working with families of patients with severe illnesses. All group leaders will complete comprehensive training in how to deliver the SIBS-ONLINE program, including online modules and three full days of face-to-face learning and role playing. These training sessions will be led by Norwegian researchers who were prominent in the development of SIBS and SIBS-ONLINE in late February 2026, approximately two to four weeks prior to commencement of intervention. Intervention adherence: Parents and siblings of individuals with severe neurological conditions are busy and may have unpredictable schedules, thus, part of the aim of this trial is to assess how feasible the program is to complete. To assess group leader adherence to the intervention, The Competence and Adherence Scale for Cognitive Behavioural Therapy (CAS-CBT) will be used. The CAS-CBT is an 11-item scale developed to measure adherence to treatment protocol and facilitator competency in manualized CBT treatment for young people. SIBS-ONLINE group leaders will complete a template at the end of each session where they will rate themselves for each CAS-CBT item on a 0-6 scale (“none” to “thorough” for adherence, “poor” to “excellent” for skills). The psychometric properties of the CAS-CBT have been demonstrated on a Norwegian sample – the CAS-CBT has a high level of internal consistency (Cronbach’s alpha of 0.87), and a high level of within-rater stability (r=>0.89). Additionally, a random 10% sample of the recorded SIBS-ONLINE sessions will be reviewed by a clinical supervisor external to the research team for group leader adherence to the program manual.