Background: Siblings of children with chronic illness can experience profound mental health difficulties and poor family functioning. Psychological support for siblings is currently lacking in Australia. SIBS is a group, cognitive behavioural therapy intervention developed in Norway which has been shown to improve sibling mental health and sibling-parent communication. We conducted a series of studies to inform the adaptation of SIBS for Australian families of children with chronic illness.
Methods: Forty-five siblings (M age=15.4 years, SD=3.3 years; 60% female) completed questionnaires which included visual analogue scales of wellbeing. Ten (22.7%) siblings completed an interview and 86 parents completed qualitative questionnaires to determine perceived need for, and central components of, psychological support. We analyzed this data with thematic analysis.
Results: Over one-third (n=17, 43%) of siblings reported clinically-relevant anxiety and 25% (n=10) reported clinically-relevant distress. In the interviews siblings revealed that they often undertook caring responsibilities for their brother or sister, and that these could be “taxing” with some siblings expressing anxiety about being a “fulltime carer” in later-life. Siblings and parents qualitatively reported that targeted mental health interventions were “desperately needed”. Siblings emphasised that they wanted to connect with other Australian siblings so they could "feel less alone", be able to communicate with their parents about their challenges and emotions, and have support delivered online from the “safety” of their bedroom.
Conclusion: Our findings show that family-based psychosocial interventions which target the sibling-parent relationship, such as SIBS, are strongly desired by siblings and parents alike. Adaptations to SIBS for Australian families involve delivering the intervention via videoconferencing (SIBS-ONLINE) and including a greater emphasis on siblings’ caring responsibilities and uncertainties for the future. We are now piloting SIBS-ONLINE for Australian families, beginning with siblings and parents of patients with genetic epilepsy given the extremely high mental health concerns among these families.

Background: Engaging with the community strengthens the research processes. Yet, this doesn’t often occur when determining what research should be prioritised. We sought to identify the research priorities for inherited retinal diseases (IRDs) – a currently untreatable group of genetic eye conditions that are commonly diagnosed in childhood - from the perspective of key stakeholders (i.e., individuals who have an IRD, caregivers, and health professionals).
Methods: We conducted a Priority Setting Partnership (PSP) following the James Lind Alliance methodology. To guide our PSP, we formed a multidisciplinary and lived experience steering group. Via survey, stakeholders submitted questions they had about IRDs. We consolidated submissions into overarching questions and confirmed whether they remained unanswered by performing a literature review. In a second survey, stakeholders voted for the unanswered questions they deemed most important. In August, we will hold two online workshops where stakeholders will discuss the highest ranked questions and finalise the top 10 research priorities for IRDs in Australia.
Results: We closed our first survey with 42 overarching questions from 227 submissions. Only one question was deemed answered in the literature. From the 151 participants (lived experience=89%) who voted in the second survey, the highest ranked questions related to treatment to: prevent, slow or stop vision loss (#1 priority) or restore vision (#2). Other highly ranked questions were around anticipated progression of vision loss (#3), the psychological impact of having an IRD and effective supports for patients (#4) and carers (#6), and access to genetic testing (#5).
Conclusion: In our presentation, we will share the final top 10 research priorities, alongside our learnings from partnering with individuals with lived experience. We will use the identified priorities to advocate for research that aligns with what the community consider most important. This will maximise research impact and utilisation of health dollars.

Background: Germline genomic sequencing (GS) is increasingly offered to children with cancer. To optimize integration in routine care, ongoing assessment of barriers to implementation and better understanding of the perspectives and experiences of healthcare professionals delivering this testing is needed.
Methods: Healthcare professionals delivering germline GS to newly-diagnosed paediatric and adolescent patients with cancer via the PREDICT study were invited to complete questionnaires including qualitative and quantitative items. A healthcare professional at each site recorded reasons for eligible families’ non-enrolment in PREDICT to interrogate barriers to recruitment. Quantitative data were analysed via descriptive statistics. Qualitative data were analysed via inductive content analysis. Results were then integrated for interpretation.
Results: Thirty-three healthcare professionals participated (33/70 invited, 47% participation rate) including 23 oncology professionals and 10 genetics professionals. Healthcare professionals perceived taking part in PREDICT was beneficial to participating and future families, and that both perceptions of personal benefit and altruism were drivers of family uptake. However, they also described concerns about workforce capacity and the potential for results to cause distress for families given the trio design and the high-stress diagnosis setting. Barriers to recruitment included clinician reluctance, family reluctance, and logistical challenges. Most healthcare professionals rated their knowledge of genetics/genomics as ‘good,’ yet in relation to germline results, few were ‘very confident’ in: interpreting (29%), explaining (32%), making treatment recommendations (9.7%), and providing psychosocial support to families (29%). Healthcare professionals recognized a need for further training in these areas for trainees, yet fewer were interested in receiving further education/training for themselves.
Conclusion: Successful implementation of routine germline GS for children with cancer will require targeted strategies to address logistical issues and alleviate potential negative psychosocial impacts for families. Recognizing escalating demand on genetics experts, upskilling of the current workforce and involvement of a broader spectrum of healthcare professionals is warranted.