Parent-Delivered Early Language Intervention for Children with Down Syndrome: A Randomised Controlled Feasibility Trial
Lead Research Organisation:
University of Manchester
Department Name: Environment, Education and Development
Abstract
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.
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.
Organisations
Publications
Burgoyne K
(2023)
Protocol for a randomised controlled feasibility trial of parent-delivered early language intervention for children with Down syndrome (PACT-DS).
in Pilot and feasibility studies
| Description | As a result of this research we have a fully developed early language intervention, specifically tailored to children with Down syndrome, for parents to implement at home. We also have data that allows us to examine how feasible and acceptable the intervention programme is to parents, and some initial evidence of its effectiveness. |
| Exploitation Route | The outcomes of this funding are a fully developed intervention programme. The next step is to evaluate this programme through a definitive Randomised Controlled Trial to evaluate its effectiveness. The long term aim of this research is to provide parents with a programme of activities and resources that they can use to support their child's language development at home. |
| Sectors | Communities and Social Services/Policy Education Healthcare |
| Description | Our study has had significant impact on the families who have taken part. This email from a father taking part in the study exemplifies the nature of this impact: Now we're coming to the end of pact ds I wanted to take the chance to thank you for letting us take part. Just over 6 years ago I stood in the hospital maternity car park crying my eyes out having just learned that our new baby had Down syndrome. I was crying over his condition but more than that I was crying because I was going to have to tell my wife when she woke from her emergency c section that the family picture we had in our heads had changed. It was by far the hardest thing I've ever had to do in my life. I spent weeks reassuring my wife that we would surround [child] with the best possible people and do everything we could to make sure he could reach for the stars in life. When we brought [child] home for the first time someone gave us a card the message on the front said "welcome to the world, your journey now begins" and what a journey we are having. We've had sad days and happy days but myself [family] have never stopped pushing [child] to be the best that he can be. I've never ever read anything about down syndrome or compared [child] to another down syndrome child as I don't want to know what he may or may not be able to do. I've just got on with raising him and see where we can get to. Then we came across your project. We were over the moon to be chosen to take part. We didn't really know what to expect or what impact it would have on [child]s life but anything that can benefit [child] we have to be part of. While working on pact ds with [child] I've cried a little(again)and I've laughed so much but the overriding emotion has been how proud I am of [child]. Things I thought he'd never be able to do he's nailed. I used to dream about playing centre forward for Man Utd or getting the golden buzzer from Simon Cowell on the X factor now I dream that one day when I pick [child] up from school he'll be able to tell me what he had for lunch rather than having to read it second hand from his communication book. I honestly believe doing pact ds over the last 10 months has brought me closer to that dream. Families with Down syndrome children need people like yourselves coming up with these great ideas and projects proving there are no limitations to what down syndrome children can achieve. I've seen the impact pact ds has had on not just [child] but on [family] and myself. When [child] was a baby we were sitting in Debenhams cafe waiting for his mum when a random old lady came over looked in the pram at [child] and told me that she had a down syndrome daughter who was now 50 years old. She told me the secret to raising a Down syndrome child was PATIENCE. How right she was. If I take anything away from pact ds it's the word patience. It takes [child] longer to learn to bounce a ball, ride a bike or read a few words in a book but I've seen through pact ds that if you just have patience there is a very high chance that your child will blow your mind. You should never underestimate the impact these projects and studies have on down syndrome children and their families. Maybe with the help of yourselves and with a load of patience other down syndrome children will be able to tell their parents what they had for lunch. Thank you again for being part of [child]s journey. And if you ever need help from [child] and his family again, all you have to do is ask. |
| First Year Of Impact | 2023 |
| Sector | Communities and Social Services/Policy,Education,Healthcare |
| Impact Types | Societal |
| Description | Development of new early language intervention programme for children with Down syndrome |
| Geographic Reach | Local/Municipal/Regional |
| Policy Influence Type | Contribution to new or improved professional practice |
| Description | Research Grant |
| Amount | £3,000 (GBP) |
| Funding ID | TRUST/VC/AC/SG/6629-9929 |
| Organisation | Baily Thomas Charitable Fund |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 07/2023 |
| End | 12/2024 |
| Title | PACT-DS Early Language Intervention |
| Description | As a result of this funding we have developed, in collaboration with families, an early language teaching programme designed to be delivered by parents to their child with Down syndrome. We have also conducted a feasibility randomised controlled trial. Data analysis is ongoing but indicates that the intervention is feasible and acceptable to parents. We are now seeking funding for a definitive trial to test the effectiveness of the intervention in improving language outcomes. |
| Type | Therapeutic Intervention - Psychological/Behavioural |
| Current Stage Of Development | Initial development |
| Year Development Stage Completed | 2024 |
| Development Status | Actively seeking support |
| Impact | We developed the intervention in collaboration with families, and have since evaluated feasibility and acceptability with 30 families with a child who has Down syndrome. |
| Description | DS CEN members meeting |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Talk given at the RCSLT Down Syndrome Clinical Excellence Network members meeting |
| Year(s) Of Engagement Activity | 2024 |
| Description | DSUK Networker meeting |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Third sector organisations |
| Results and Impact | Talk at the DSUK Networker meeting, which is a forum for people who run Down Syndrome parent support groups across the country to come together, hear about latest developments, and share good practice |
| Year(s) Of Engagement Activity | 2024 |
| Description | Online information event for parents |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Study participants or study members |
| Results and Impact | Two online information events aimed at parents of children with Down syndrome, and advertised via regional Down syndrome support groups |
| Year(s) Of Engagement Activity | 2023 |
| Description | Talk at the Down syndrome Research Forum |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Other audiences |
| Results and Impact | The DS Research Forum is an annual event attended by an international audience of researchers (including post graduate students), representatives from DS support groups (charities), professional organisations that support individuals with DS, speech and language therapists, education professionals, and parents. Hartwell, K., Pagnamenta, E., Stojanovik, V., & Burgoyne, K. (2023). Parent-delivered early language intervention for children with Down syndrome (PACT-DS): A pilot study. In Burgoyne, K. (chair), Parent-delivered interventions for early language and communication in children with Down syndrome: Current empirical evaluations and next steps for future research. Down Syndrome Research Forum (online), April. |
| Year(s) Of Engagement Activity | 2023 |
| Description | Talk for Speech and Language Therapists |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Talk for speech and language therapists at the Royal College Annual Conference: Hartwell, K., Pagnamenta, E., Stojanovik, V., & Burgoyne, K. (2023). Parent-delivered early language intervention for children with Down syndrome (PACT-DS): A pilot study. Royal College of Speech and Language Therapists conference (online), November. |
| Year(s) Of Engagement Activity | 2023 |