Parent-Delivered Early Language Intervention for Children with Down Syndrome: A Randomised Controlled Feasibility Trial

Down syndrome is the most common genetic cause of intellectual disability, affecting 700-800 babies annually in the UK (Wu & Morris, 2013). Children with Down syndrome have difficulties developing language skills. These difficulties have long term negative consequences for all aspects of their lives including social development, education and employment opportunities, and emotional wellbeing and mental health (World Health Organisation, 2007). These aspects all have the potential to be improved through targeted early language intervention.

Parents and Children Together (PACT) is a parent-delivered early language teaching programme for typically-developing pre-school children at risk of language delays. A previous project (Burgoyne et al., 2018) showed that PACT leads to improvements in children's language and early literacy skills. PACT contains many features which support learning for children with Down syndrome, and could be useful for this group. Informal feedback from specialist speech and language therapists and parents of children with Down syndrome suggests that PACT has potential to support language learning for children with Down syndrome and suggested ways the programme could be adapted to enhance its effectiveness for this group of children.

The aim of the current study is to adapt and evaluate PACT as a parent-delivered language intervention for young children with Down syndrome. This aim will be met through two phases of work with the following objectives:
1) To carry out a pilot study to identify and evaluate adaptations to the PACT programme. Over the first year of the project, we will work closely with a small group of parents who have a child with Down syndrome (5 children; aged 3-6 years) to explore their experiences of using PACT, and identify adaptations to the programme to enhance its effectiveness. Parents will be asked to take part in two cycles of piloting and feedback. In the first cycle, parents will deliver 5 weeks of the original PACT programme to their child. We will collect data on their experiences, including aspects of the intervention that could be improved, using record forms, observations of delivery, simple surveys, and a focus group. We will use this information to make changes to a further 5-weeks of the PACT programme, which parents will deliver in the second cycle of piloting. Parent feedback from cycle 2 will evaluate the changes we have made and identify any further adaptations to the programme. This process will lead to a fully adapted programme that is tailored to the needs of parents and young children with Down syndrome (which we call PACT+) for use in the second phase.
2) To conduct a feasibility randomised controlled trial to assess the feasibility of the intervention and explore the programme's potential to support language and literacy development in young children with Down syndrome. We will recruit 24 children with Down syndrome (aged 3-6 years) and their parents to take part. Children will be randomly allocated to either a PACT+ group or to a waiting control group (who will receive intervention at the end of the project). The PACT+ group will be trained to deliver PACT+ every day (20-minutes a day; 5 days a week) to their child over 30-weeks. We will collect data using assessments of child language and early literacy, measures of parent wellbeing, qualitative surveys and interviews, and monitoring data to explore feasibility of the intervention (including recruitment and retention of families, and adherence and acceptability of intervention) and cost and benefits. Data will be collected before intervention, immediately after the 30-week intervention programme, and 6-months after intervention ends.

This research has the potential to make a significant difference to our understanding of how to support parents of young children with Down syndrome to develop their child's language development at home, and to improve language outcomes for this group.