Introducing PACT-DS: A Study to Adapt and Evaluate a Parent-Delivered Early Language Intervention for Children with Down Syndrome
Kelly Burgoyne1, Emma Pagnamenta2, and Vesna Stojanovik2
- Manchester Institute of Education, University of Manchester, UK
- University of Reading, Reading, UK
Background: Children with Down syndrome have significant language learning difficulties and need support for language development from an early age to reach their full potential. There is, however, a lack of evidence-based language intervention for children with Down syndrome, and whilst parents are well placed to support early language development (Roberts et al., 2019), they need support to do so. This project will adapt and evaluate an evidence-based, parent-delivered, early language intervention for children with Down syndrome.
Research Questions: 1) What adaptations support parents to implement the PACT program with children with DS? 2) How feasible is it to complete a definitive RCT of the intervention? 3) What are the potential benefits of the intervention for children's language and literacy development?
Method: To address these questions, this project comprises of two stages of research: Stage 1 will work with parents to adapt the intervention program for children with Down syndrome. The adapted program will be evaluated in a feasibility Randomized Controlled Trial in Stage 2.
Results: This project is due to start in April 2022. At this stage we are hoping to share and receive feedback on our plans for the project.
Conclusions: This work represents critical initial steps in developing evidence-based parent-delivered early language intervention for children with DS and will hopefully lead to significant advancements in early language intervention research and practice for this group.
- Parents and Children Together (PACT) is an early language intervention designed to be delivered by parents to their child at home. Evidence suggests that typically developing pre-school children who receive the program in the year before they start school, make significant gains in early language and literacy skills (Burgoyne et al., 2018).
- PACT uses many strategies that support learning in children with Down syndrome. Informal feedback from specialist practitioners and parents suggests that the program has potential to improve language outcomes for this group of children.
- This project will adapt and evaluate PACT as a language learning tool for young children with Down syndrome. There are 2 stages involved:
- Stage 1) A pilot study with parents and 3-6-year-old children with Down syndrome will identify and evaluate adaptations to the program
- Stage 2) A feasibility randomized controlled trial (RCT) will explore initial evidence of the program’s potential to support children’s language and literacy development.
- Stage 1 of the project is due to start in August 2022. We are looking forward to getting started! Please keep an eye on the project website for further updates about the project (see the link below). Information about how to get involved in PACT-DS can also be found below.
Key Information and Resources:
- Project Website: For more information on Parents and Children Together: A parent-delivered early language teaching program | https://sites.manchester.ac.uk/pct/
- We are looking for a Research Assistant/Associate to work with us on this project. Please see https://www.jobs.ac.uk/job/CNM161/research-associate-assistant-in-psychology-and-education (Closing date April 1st)
- We are looking for families who might like to take part in PACT-DS. To take part, children must be aged between 3 and 6 years at the start of Stage 1 and/or Stage 2 (Stage 1 starts in August 22, and Stage 2 in August 23). Children must be able to communicate using a minimum of 10 words/signs. Parents must be able to read and speak English in order to access the program materials. Families must live within a 40 mile radius of Manchester or Reading University. To express interest in taking part, please contact Kelly (Kelly.Burgoyne@manchester.ac.uk)
Information about the speakers and contact details:
Dr Kelly Burgoyne, Kelly.Burgoyne@manchester.ac.uk https://www.research.manchester.ac.uk/portal/kelly.burgoyne.html @PACTLanguage
Professor Vesna Stojanovik email@example.com https://www.reading.ac.uk/pcls/staff/vesna-stojanovik @StojanovikV
Dr Emma Pagnamenta, firstname.lastname@example.org https://www.reading.ac.uk/pcls/staff/emma-pagnamenta @EmmaPagnamenta
Early Social Communication Intervention for Young Children with Down Syndrome: ASCEND study update
Vesna Stojanovik1, Emma Pagnamenta1, Sarah Sampson1, Rachel Sutton1, Kate Harvey1, Victoria Joffe2, Elena Pizzo3, Sarah Rae4, Nita Madhani5
- University of Reading, School of Psychology and Clinical Language Sciences
- University of Essex
- University College London
- Oxford Healthcare Foundation Trust
- North East London Foundation Trust
Background: Improving the language and communication skills of young children with Down syndrome is vital for their future social and emotional well-being and behavior, and consequently contribution to society. There are currently no standard interventions for improving the language skills of children with Down syndrome under the age of 36 months. Evidence suggests that early parent-based interventions may be effective in improving language outcomes. In partnership with parents and speech and language therapists, we have co-developed an intervention focusing on early social communication skills. We are currently running a feasibility study which will inform a future pilot/full trial to test whether the intervention is effective in improving language skills before children with Down syndrome start school.
Method: This is a two-arm feasibility randomized controlled trial (RCT), with 1:1 randomization stratified by trial site comparing the intervention plus standard NHS speech and language therapy with no intervention (standard NHS speech and language therapy only). We recruited 20 children with Down syndrome aged between 11 and 36 months at the start of the intervention. Recruitment was from three NHS sites and via self-referral. In the intervention arm, parents/guardians receive brief training on the parent-based intervention and a manual to follow with their child for 10 weeks. The children's language and early communication skills and family health outcomes are assessed by a blinded assessor at baseline, post-intervention and 6-month follow-up. Questionnaire and semi-structured interviews explore the acceptability of the intervention to parents and speech and language therapists. The study's objectives are:
- Determine the acceptability of the intervention to speech and language therapists and effectiveness of recruitment of children with Down syndrome by speech and language therapists;
- Determine whether parents of children with Down syndrome are willing to be randomized
- Identify different routes to identifying eligible children with Down syndrome (pediatricians, health visitors, speech and language therapists, charities);
- Estimate follow-up rate and adherence to intervention;
- Inform the measurement of health economic outcomes and resource implications of a parent-led intervention
Results: Our preliminary results show that parents who took part in the intervention find it acceptable. The interviews with speech and language therapists are ongoing but so far they all find the intervention acceptable. Of the 20 parents who agreed to take part in the study, 1 wasn't willing to be randomized. We identified that recruiting through speech and language therapy services and charities which support families of children with Down syndrome are the most viable recruitment routes. The follow up rate was 80%. Adherence to treatment is currently being analyzed. The health economic outcomes implications are not yet ready as the data are still coming in. Although it was not part of the feasibility study to look at the effectiveness of the intervention, we did look at the difference in the language outcomes between the intervention and control groups pre and post intervention. The data suggest that the intervention group had a significantly higher receptive and expressive language scores compared to the control group.
This is a collaborative study between academics and speech and language therapy services, funded by the National Institute of Health Research (NIHR). The aim of the study is to see if an intervention which focuses on children's early social communication skills and is primarily delivered by parents could be rolled out through the NHS Speech and Language Therapy Services.
For this feasibility study, we had 20 participants. Of these 19 were randomly put into intervention or waiting control group. Both groups were assessed at 3 time points on language, social communication, general cognitive abilities, parent and child quality of life and parent depression and anxiety. The intervention group were sent a parent manual, a bag of toys, access to video links which demonstrate the intervention and parent diaries as soon as possible after the first assessment. The waiting control group were sent the same materials but approximately 9 months later.
The intervention is parent-led though the parents have access to their child's speech and language therapist/or their local speech and language therapy service for support. The intervention lasts for 10 weeks, and the parent is supposed to do the activities with their child for one hour per week.
The parents can choose how to split the hour (so some parents can do 3 sessions, each lasting 20 mins, others may do 6 sessions, each lasting 10 mins. As we are getting to the end of the trial, we have been evaluating it so that we can decide whether to do to a full trial.
We have so far established that more than 95% of the parents who expressed an interest in the study were willing to be randomly assigned to either an intervention group or a control group. We also found that speech and language therapists were willing to help with the recruitment of participants and to support the parents with this type of intervention.
We are now working on establishing whether our outcome measure (this was a parent questionnaire where parents tick the words their child says or understands) is good enough and we are also trying to work out how many participants we will need for a full clinical trial. Although this study was only a feasibility and it is not really intended to establish if the intervention is effective, we have some looked at our preliminary data.
It looks like the children who were in the intervention group have much improved language and communication immediately after they had completed the intervention than the children in the waiting control group, but we have yet to get these data fully analyzed by a statistician.
University of Portsmouth, UK; Down Syndrome Education International.
Drawing on research, this paper will argue that at present, speech development is neglected in therapeutic approaches for babies and children with Down syndrome.
The paper will review the evidence for the importance of the development of speech perception and speech production from the first months of life and the extent of its influence on language development and verbal working memory. The evidence will include what is known about the role of speech development on spoken language in children with typical development, those with Down syndrome and those with other disabilities including deafness and cleft palate. Approaching this from a developmental systems perspective, the author will argue that the early development of speech sound perception, discrimination and production is essential for spoken language development. She will then illustrate how delays and difficulties in the speech domain will influence the rate of vocabulary and grammar development. This is not one way traffic. The slow development and use of spoken vocabulary will also influence the developing phonological system supporting the production of clear spoken words. Studies show that the child's use of voice from earliest canonical syllables influences caretakers' frequency of linguistic mapping (teaching words). Lack of practice and mastery of speech sound and word production leads to lifelong intelligibility difficulties for most individuals with Down syndrome. In typical development, speech production becomes automated and effortless and the fact that this rarely happens for those with Down syndrome has been highlighted by Silverman (2007), who argues this plays a fundamental role in their language and cognitive development and discusses proposals for intervention. The author will argue that the increasingly detailed knowledge of early speech and language development supports his view and will set out the practical implications for intervention.
Silverman, W. (2007) Down syndrome: Cognitive phenotype. Mental Retardation and Developmental Disabilities Research Reviews, 13, 228-236.
- Speech development is a challenge for infants, children, teens and adults with Down syndrome. It has been shown to limit intelligibility, influence vocabulary development in school age and adaptive behavior in adults. Studies suggest delay rather than difference – so same developmental pathways.
- Recent studies have shown how important early speech perception and production is for typically developing children from the first year of life. It influences vocabulary and grammar development into school years, it influences brain development and hemisphere specialization for language. It is influenced by input – how often and how adults talk to children.
- This information is shared to encourage discussion and development of interventions for speech perception and production from the first year of life and through to adult years – currently often neglected in speech and language therapy for those with Down syndrome. Examples were shared from recent work with children with other disabilities.
Selected references to recent research work.
Choi, D., Black, A.K. & Werker, J.F. (2018) Cascading and multisensory influences on speech perception development. Mind, Brain and Education, 12, 212-223. https://onlinelibrary.wiley.com/doi/abs/10.1111/mbe.12162
Lyttle, S. R. & Kuhl, P ,K. (2028) Social interaction an language acquisition: toward a neurobiological view. The Handbook of Psycholinguistics. Wiley. http://ilabs.washington.edu/sites/default/files/2018_lytle_kuhl_socialinteractionandlanguage_neurobiologicalview_.pdf
Vihman, M. M. (2017). Learning words and learning sounds: Advances in language development. British Journal of Psychology, 108(1), 1–27. https://doi.org/10.1111/bjop.12207
Romeo et al LENA | Building Brains Through Early Talk
A full list of references and slides from talk available from Sue Buckley email@example.com
Down Syndrome Toolkit for Pediatric Speech and Language Therapists
Susan Chryssovergis, Lancashire and South Cumbria NHS Foundation Trust
This Toolkit was published in January 2022 and aims to provide evidence-based guidance to speech and language therapists working with children with Down syndrome from birth to 19 years of age. It includes an overview of the relevant literature on how having Down syndrome may affect speech and language development, provides guidance on therapy approaches and practical tools for assessment and target setting. Lancashire and South Cumbria Foundation Trust is made up of six localities based across Lancashire. We formed a working party with specialist and newly qualified SLTs to write a Toolkit in 2020. Our aim was for staff to have a reference point for up-to-date research, information, intervention and target setting. When we shared our work at The Down Syndrome Research Forum in 2021, we received many requests to share it. With the help of both Professor Sue Buckley and Dr Kelly Burgoyne, we managed to bring together the Toolkit in a form to share more widely.
The aim of this brief presentation is to inform the community about the Toolkit, the interest received so far, and to invite collaboration. The Toolkit is intended to represent a working document to be updated and refined as new research evidence and understanding becomes available. A survey is linked to the document download page at The Down Syndrome Toolkit for Pediatric Speech and Language Therapists.