Session 1, Symposium: Parent-delivered interventions for early language and communication in children with Down syndrome: Current Empirical Evaluations and Next Steps for Future Research

Note: This symposium will not be recorded

Organizer and presenter: Kelly Burgoyne1 K.Burgoyne@manchester.ac.uk

Presenters: Vesna Stojanovik2 (v.stojanovik@reading.ac.uk), Emma Pagnamenta2 (e.pagnamenta@reading.ac.uk), Mirjana Jeremic2 (m.jeremic@pgr.reading.ac.uk), Kirstie Hartwell1 (Kirstie.Hartwell@manchester.ac.uk), Pauline Frizelle3 (p.frizelle@ucc.ie)

  1. Manchester Institute of Education, University of Manchester
  2. School of Psychology and Clinical Language Sciences, University of Reading, Reading, UK
  3. Department of Speech and Hearing Sciences, University College Cork, Republic of Ireland

Language and communication skills are essential to a broad range of outcomes including education, inclusion and independence, and mental health. Finding effective ways to support language and communication from an early age is critical for children with Down syndrome. Evidence-based support for early language development is however currently lacking (e.g. O’Toole et al., 2018; Smith et al., 2020) leaving parents, educators, and therapists unclear how best to support early language and communication skills for children with Down syndrome. Involving parents in early intervention may be an effective way to support early language skills, especially in the context of restricted access to therapy services. The aim of this symposium is to present findings from four studies that examine early parent-delivered language and communication interventions. In the first paper, Stojanovik and colleagues report results from a feasibility trial of an early parent-delivered social communication intervention (‘ASCEND') conducted with 20 children with Down syndrome aged 11-36 months and their parents. The second paper, presented by Jeremic and colleagues, provides a mini review of studies that examine language and communication in young children with Down syndrome (birth to 6 years) in the context of shared reading – a well-established vehicle for supporting language skills in other groups of children. Hartwell and colleagues present the third paper, reporting on the first stage of a project designed to adapt and evaluate a parent-delivered early language teaching program (PACT) for 3-6 year old children with Down syndrome. In the fourth paper, Frizelle and colleagues report findings from a study investigating the feasibility and effectiveness of an online language through music program for young children with Down syndrome aged 1-3 years. Together, this symposium will highlight current research on parent-delivered interventions for early language and communication for young children with Down syndrome and provide directions for future research.

Paper 1: Evaluating an early Social communication intervention for young children with Down Syndrome (ASCEND): Results from a feasibility randomized control trial

Vesna Stojanovik1, Emma Pagnamenta1 , Sarah Sampson1, Rachel Sutton1, Benjamin Jones2, Victoria Joffe3, Kate Harvey1, Elena Pizzo4

  1. University of Reading, Reading, United Kingdom
  2. University of Exeter, United Kingdom
  3. University of Essex, United Kingdom
  4. University College London, United Kingdom

Corresponding author: v.stojanovik@reading.ac.uk

Background: This paper reports the results from a feasibility trial of an early parent-delivered social communication intervention for young children with Down syndrome (‘ASCEND'). The intervention focuses on developing children’s early social communication skills, in particular responding to shared attention. The aim was to inform the feasibility of running a full-scale trial through National Health Service (NHS) Speech and Language Therapy (SLT) Services, to assess whether the intervention is effective in improving language skills before children with Down Syndrome start school.

Method: This was a two-arm feasibility randomized controlled trial (RCT), with 1:1 randomization stratified by trial site, comparing the intervention plus standard NHS SLT provision and no intervention (only standard NHS SLT provision). We recruited 20 children with Down Syndrome aged 11-36 months through three NHS SLT services, 19 of whom were randomized (10 children -intervention group, 9 -control group). Pre and post intervention and 6 month follow-up Assessments included language, social communication skills, adaptive behavior, quality of life (parents and children), parental anxiety and depression. The intervention was parent-delivered with parents having access to SLT services and the research team. Data were collected on recruitment and retention, standard care, treatment fidelity, acceptability of the intervention by the parents and speech and language therapists, feasibility of collecting health economic measures and suitability of the primary outcome measure.

Results: The sample was sufficient for a feasibility study. The intervention (manual, support, materials) was positively received by participating parents. SLTs also evaluated the acceptability of the intervention positively. Treatment fidelity and retention were acceptable. The preliminary health economic data suggest this intervention will be low cost.

Conclusion: Based on recruitment, retention and treatment fidelity, and acceptability of the intervention to parents and SLTs, a full-scale trial would be feasible in order to assess the effectiveness of the intervention.

Paper 2: Shared book reading for children with Down syndrome: a mini-review

Mirjana Jeremic1, Emma Pagnamenta1, Vesna Stojanovik1, Kelly Burgoyne2

  1. School of Psychology and Clinical Language Sciences, University of Reading, Reading, UK
  2. Manchester Institute of Education, University of Manchester

Corresponding author: e.pagnamenta@reading.ac.uk

Background: The development of language and communication skills is one of the biggest challenges for children with Down syndrome. However, few evidence-based interventions exist to enhance the development of language and communication in this population. There is well-established evidence of effectiveness of shared book reading (SBR) interventions for language and communication development of typically developing children and those at risk of language problems, and evidence is emerging for effectiveness for children with developmental disabilities. Our aim was to provide a review of the existing evidence for SBR in relation to language and communication outcomes for young children with Down syndrome.

Method: A systematic literature search was conducted with the following inclusion criteria: children with Down syndrome aged 0-6;11 years, SBR, language or communication outcomes. Eight studies met the criteria: 1 SBR intervention, 4 combined interventions that included SBR, 2 experimental studies, and 1 observational studies. Sample sizes ranged from 1 – 103 children with Down syndrome. Ages of participants ranged from 18 – 83 months.

Results: We found emerging evidence that interventions that incorporate SBR strategies are associated with improved language and communication outcomes for young children with Down syndrome as well as evidence of improved parental sensitivity and SBR strategies implementation following the intervention instruction. However, the existing evidence is limited in scope, of low quality, including mostly single case studies, with only one study including a control group.

Conclusion: We conclude that further research is essential to establish exactly what components of SBR intervention are most effective for young children with Down syndrome and what further adaptations are needed given the cognitive profile and variability that exists within this population.

Paper 3: Parent-Delivered Early Language Intervention for Children with Down Syndrome (PACT-DS): A Pilot Study.

Kirstie Hartwell1, Emma Pagnamenta2, Vesna Stojanovik2, Kelly Burgoyne1

  1. Manchester Institute of Education, University of Manchester
  2. School of Psychology and Clinical Language Sciences, University of Reading, Reading, UK

Corresponding author: kelly.burgoyne@manchester.ac.uk

Background: Children with Down syndrome (DS) have significant language learning difficulties and require support for language development from an early age to reach their full potential. However, there is a lack of evidence-based language intervention for children with DS. Parents and Children Together (PACT) is an evidence-based parent-delivered language teaching program which leads to gains in typically developing preschool children’s language and literacy skills (Burgoyne et al., 2018). The current project (PACT-DS) aims to adapt and evaluate PACT as a language learning tool for young children with DS. This paper reports on Stage 1 of the project in which we are working with parents to pilot and adapt the PACT programme.

Research Questions: What adaptations support parents to deliver the PACT program with children with DS?

Method: We trained parents of six 4-6-year-old children with DS to deliver the first 5 weeks (25 sessions) of the PACT programme (Cycle 1). We used a mixed methods approach to evaluate their experiences through observations, daily record forms, a survey and a focus group and identified adaptations to support programme delivery and effectiveness. We then adapted the proceeding 5 weeks according to their feedback, which is currently being delivered by parents (Cycle 2).

Results: Here, we report data from Cycle 1 of piloting. Parents completed between 15 and 25 sessions of the unadapted PACT programme. Observations of delivery and parent feedback highlighted many positive features of the programme. However, several adaptations were identified as important for enhancing delivery and potential effectiveness.

Conclusion: Cycle 1 of piloting enabled the programme to be adapted in line with user feedback. Further piloting is needed to critically evaluate the adaptations. Next steps will be discussed.

Paper 4: The feasibility of an online language through music programme and the impact of dosage on vocabulary outcomes in young children with Down Syndrome

Pauline Frizelle1, Eva McMullan2, Eibhlín Looney, Ciara O’Toole1, Nicola Hart3

  1. Department of Speech and Hearing Sciences, University College Cork, Republic of Ireland (corresponding author)
  2. Department of Music, University College Cork
  3. Down Syndrome Ireland

Corresponding author: p.frizelle@ucc.ie

Background: There is a dearth of effectiveness studies investigating the effects of language interventions for very young children with Down syndrome, where dose frequency has been manipulated. Additionally, none have reported on the use of music as a medium through which language and sign can be learned in an engaging way.

Aims: To 1) examine the feasibility and acceptability of a language through music intervention programme for young children (1 – 3;06 years) with Down syndrome, 2) determine the effectiveness of the intervention, 3) compare effectiveness at two intervention dose frequencies.

Method: The study was carried out in two phases using a mixed methods design. Phase 1: qualitative data were gathered (survey and focus groups) to examine feasibility issues when implementing a video-based language through music intervention at home. Phase 2: effectiveness of the intervention was examined comparing two groups, randomly assigned to a high and low intervention dose frequency. The Down syndrome Education checklists were used as the primary outcome measure. Process data were gathered to determine the acceptability of the intervention in practice and to identify factors that would improve successful future implementation. Acceptability data were analyzed with reference to the theoretical framework of acceptability (V2).

Results: 43 parents completed the phase 1 survey, and a subgroup (n=5) took part in the focus groups. Once weekly (<30 minute) sessions in the morning were indicated as the preferred scheduling choice. Quantitative data will be analyzed using multi-level linear modeling (not yet completed). Parents perceived the intervention to be effective for their child with Down syndrome and noted a positive cascading effect for the family.

Conclusions: The results of this study will add to our knowledge of real-world effective online-interventions, specifically levels of dosage required to effect change in the receptive, signing, and expressive vocabulary of young children with Down syndrome.