A randomised controlled trial of a digital parent support programme for parents of children with intellectual disabilities: The Digital Family Support study

Research question: Does Stepping Stones Triple P (SSTP) Online and access to usual supports (US) lead to improvements in the behavioural and emotional problems of children with intellectual disabilities (ID) compared to US alone at 12 months post randomisation? Background: Thirty-eight to 49% of children ID have clinically significant levels of behaviour and emotional problems, higher than typically developing children (14%). Parents of children with ID are themselves 2-3 times more likely to report elevated levels of mental health/other psychological problems compared to other parents. Access to appropriate child and parenting supports can be challenging for parents. Digital parenting support programmes such as SSTP Online, have the potential to offer much needed support. Aims and objectives: To determine the effectiveness (including cost-effectiveness) of the SSTP Online parenting programme for parents of children with ID 2-11 years of age to improve child behavioural and emotional problems. Design: A two-arm parallel group, 1:1 randomised controlled effectiveness trial of SSTP Online plus Usual Support (US) (versus US alone) for parent carers of children with ID, with an internal pilot with clear progression criteria, and embedded process and economic evaluations. Population and inclusion criteria: Parent carers of a child (aged 2-11 years) with ID where parent carers have concerns about their child’s behavioural or emotional problems. Intervention: SSTP Online - an online self-directed parent completed programme which consists of nine modules including text, videos, and interactive activities. Peer supporters provide up to 3 sessions of individual motivation, support, and encouragement to parents in completing the programme. Comparator: Usual Support (US) for parents with a child with ID as offered by Local Authorities. Sample size, randomisation, and analysis: A sample size of 432 parent carers (216 per arm) will allow us to detect a small-medium effect of d=0.3 with 90% power, a=0.05 and allowing for a pre-post correlation of r=0.6 and 30% attrition. One parent carer from each family will be allocated on a 1:1 individual basis to each trial arm (no family clustering). The primary analysis will use an ANCOVA design and compare mean scores between trial arms on the DBC total score at 12-months post-randomisation, adjusting for baseline DBC total score, and four prognostic factors. Public Involvement: We have worked with family carers to design this research. We have partnered with the Council for Disabled Children who are an umbrella body for the disabled children’s sector, bringing together families, professionals, practitioners, and policy-makers. We will have a parent carer advisory group (PCAG) comprised of parent carers who will advise on key processes, materials, and report to oversight groups. A professionals advisory group (PAG) consisting of social care commissioners and senior managers will advise throughout the trial, with a specific focus on dissemination and development of future implementation in social care services. Dissemination and impact: Results will be made available via peer-reviewed open-access journals and conference presentations, and in accessible formats including lay summaries and online video (distributed via social media, relevant websites and networks). We will hold a dissemination event for stakeholders.