What works? - building the evidence base for speech and language therapy for children with Down syndrome.

Symposium Aim

The aim of this symposium is to discuss the challenges faced by those delivering SLT to children with Down syndrome and their families. We recognise that services are often being challenged by families concerned about provision and speech and language therapists are challenged to meet needs for a variety of reasons. In the absence of good data to guide what is effective (e.g. on how SLT should be delivered, when, by whom and how often) parents are also not able to judge what their child needs or what to ask for, leading to increased stress. Papers will include a systematic review of the evidence base that is available and presentations by practitioners giving examples of the different ways that SLT is being delivered and engaging in discussion about the way forward.

A systematic review of speech and language interventions for children with Down syndrome from 0 to 6 years

Vesna Stojanovik; Emily Seager; Sarah Sampson; Jacqueline Sin; & Emma Pagnamenta

Contact: v.stojanovik@reading.ac.uk


We aim to review to identify and systematically review existing early speech and language interventions for young children with Down syndrome from birth up to and including children aged 6 years at the beginning of the intervention, and to investigate the effectiveness of existing interventions in improving speech and language outcomes. We conducted a systematic search of relevant electronic databases, journals and review papers to identify early intervention studies targeting speech and language outcomes published up to May 2020. Studies which met the inclusion criteria were screened and appraised for quality using Pedro-P (Perdices et al., 2009) and an adapted version of the National Institute of Health (NIH)'s Quality Assessment to Controlled Intervention Studies (NIH, 2014). Four studies were included and synthesised in the review, with a total of 79 children. Children were aged between 21 and 55 months at the beginning of the intervention, with an estimated mean age of 30.4 months. We identified, broadly speaking, one type of intervention: namely communication training and responsive teaching. This approach involves training parents/primary caregivers to enhance children's communication using one or more of the following techniques: Responsive teaching (RT), Responsive Education (RE), Pre-linguistic Milieu Training (PMT) or Milieu language teaching (MLT).

The findings were mixed, with studies reporting positive intervention effects to children's speech/language outcomes (Girolametto et al., 1998, Karaaslan & Mahoney, 2013, Yoder, 2014). One study reported negative effects to child speech and/or language outcomes (Yoder & Warren, 2002), though there were improvements to secondary outcomes, such as maternal speech and maternal responsiveness. Although the studies reviewed were of good enough quality to be included in the review, the evidence is still in the making, due to the low participant number and the fact that the studies had high risk of bias. We conclude that there is an urgent need for higher quality intervention studies in the field to build a stronger evidence base and to ensure that early interventions are informed by high-quality science.

Intensive telehealth vocabulary therapy: a 15 week single case study trial

Alys Mathers, Specialist Speech and Language therapist

Contact: alys@speakaboo.co.uk


Background: From September 2019 to December 2019, 5 year old Alfie participated in a 15 week Speech and Language therapy programme in school via telehealth. The outcomes for both Alfie and the adults working with him are provided and discussed.

Research questions:

Method: Alfie attended 12 direct therapy sessions supported by teaching assistants. Three liaison and coaching sessions took place with other teaching assistants who were unable to attend the weekly sessions. Direct therapy sessions consisted of introducing new vocabulary, at a rate of four new words every five weeks, in two new activities every week (with an aim to support generalisation of vocabulary use).

Results: At the end of the block, Alfie was able to use four of his target words in four different activities, two of his target words in at least two activities, and four of the target words in at least one activity. One target word ('toilet') was also used in Alfie's spontaneous language. This progress was maintained over the consolidation period (until the end of March 2020), with Alfie extending his use of four of his target words to further activities and everyday interactions. Alfie was reported to be attempting communication more frequently. Teaching assistants were able to identify functional vocabulary and communication opportunities, and describe the techniques they were putting in place. They needed ongoing support to carry out a wider range of the activities modelled.

Conclusion: Weekly vocabulary therapy via telehealth can lead to an increase in functional communication skills and teaching staff knowledge when delivered over a 15 week block. This progress is maintained and further generalisation is observed.

Syndrome specific speech and language therapy in the time of Covid

Leela Baksi, Speech and language therapist, Symbol

Contact: leela.baksi@symbolconnect.co.uk


Summary: Robust understandings of syndrome specific speech and language therapy are essential in planning and executing service delivery under COVID-19 restrictions.

Background: It will be some time before the medium to long term effects of COVID-19 on learning and quality of life for our community can be reported. Charities and support groups (e.g. Mencap, local SEND support groups) have gathered information about changes in availability of services, and highlight the perceived inadequacy of services prior to the pandemic, which have further reduced or ceased under COVID-19 restrictions (e.g. APPG on SEND). Service providers are taking steps to mitigate against impacts that we speculate, but cannot yet know.

Research Questions: When devising alternative ways of meeting needs and innovative models of service delivery under COVID-19 restrictions, it is imperative to consider, what are the distinctive features and components of syndrome specific speech and language therapy for people with Down syndrome? There is the risk that support will be less than optimal unless we plan using understandings of what was working effectively in pre-COVID-19 service provision.

Method: I set out some functions of speech and language therapy with families and their children birth through primary education, and review 'targeted intervention' in the context of syndrome specific speech and language therapy.

Results: I identify key elements to consider when reconfiguring services, and flag up resources that pre date the pandemic that are potentially useful in service delivery restricted by COVID-19.

Conclusion: Well informed understandings of the characteristics of effective, syndrome specific speech and language therapy are crucial to the development of alternative models of service provision under COVID-19 restrictions

Developing NHS community speech and language therapy services to support the needs of children with Down syndrome and their families

Susan Chryssovergis, Clinical Lead Speech and Language Therapist - Complex needs and West Lancs team lead, Children's Integrated Therapy and Nursing Service Lancashire Care NHS Foundation Trust

Contact: susan.chryssovergis@lancashirecare.nhs.uk


This talk will cover:

  1. The service and the population we cover in the trust, how we are funded and the type of service we provide- giving numbers of SLTs, typical caseload numbers and number of children with Down syndrome by preschool, primary, secondary.
  2. The challenges - Survey results from SLTs feeling they lacked the knowledge to support this group, tribunal findings proposing high levels of direct therapy input by specialist SLTs, which we were unable to provide and some very anxious parents.
  3. What we then did to try to address this.
    • We sought training for the team.
    • We formed a special interest group and went to the evidence base. From this we developed the Down syndrome toolbox detailing studies, resources and best practice for the therapists in the team to refer to. We did however find a lack of a reliable evidence base on how frequently SLT should be delivered, but a focus on parent and educator training and support.
    • Why we didn't opt for a specific care pathway.
    • The development of a specific case history tool to help tailor the support we offer to meet the needs of the children and their families.
    • The development of advice booklets for parents and educators and plan to complete them for different age groups.
    • Parent and educator training.
    • We also plan to meet with parents to discuss the work in progress.
  4. Is this enough? We will never be able to meet the recommendations of private reports and tribunals - do they give parents false/unnecessary expectations and increase anxiety? as SLTs what is our role? how can we collaborate with private practitioners? Support parents?