A Customised, Intensive Parent-Child Interaction Therapy for Children With Down Syndrome: Findings From a Real-World Pilot Effectiveness Study.

Abstract

Background Coaching parents through parent-child interaction therapy (PCIT) is a key aspect of early communication intervention for children with Down syndrome. However, the evidence for its effect on child language outcomes is limited. Some research has indicated that more intensive, individualised interventions yield better outcomes; however, in Ireland many children receive less than the optimal dosage of intervention. Aims The aim of the study was to investigate the effectiveness of an intensive PCIT intervention in a real-world clinical context using a structured coaching protocol. We also aimed to explore SLT and parental views/experiences of the intervention. Methods and procedures We piloted a PCIT intervention incorporating keyword signing (JEMT + Sign) with four parent-child dyads. A multiple baseline, individual case series design was used to measure the intervention effects based on (1) accuracy of parental strategies; (2) frequency of parental strategies and (3) child communication acts. Four parent-child dyads took part in a twice-weekly intervention delivered by two trained specialist speech and language therapists over 11 weeks, via a hybrid in-person and tele-practice model. Parental coaching followed a 'teach-model-coach-review' protocol. Researchers not involved in delivering the intervention coded parent behaviours and child communication acts at baseline, during the intervention and at follow-up. In addition, interviews were conducted to gather parent and practitioner views on the intervention. Outcomes and results Using structured visual analysis supplemented with single-case statistics, we found that the intervention resulted in an increase in parental accuracy and for some, increased frequency of JEMT + Sign strategy use, although with individual variation. The children's language and communication improvements were also variable. Clinicians noted that the intervention suited the families involved, but may not be feasible for all families and found the structured coaching protocol of this intervention to be particularly helpful and effective. Parents valued the more intensive and individualised intervention, although they recognised that their existing relationship with the clinician and the flexibility of delivery were beneficial. Conclusions and implications It was possible to implement this intensive intervention for children with Down syndrome in this Irish clinical setting. Parents and SLTs found the intervention to be valuable and reported that the hybrid nature of the delivery and clear coaching methods were helpful. Further research is needed to determine the longer-term effects and suitability of the intervention for a wider group of families and services. What this paper adds What is already known about this subject Individualised and intensive intervention has been found to be more effective for children with Down syndrome than more diluted services but is rarely available. This is particularly true of the Irish context where SLT services are under-resourced for children with disabilities. This study aimed to determine if it was possible to implement an intensive PCIT intervention for children with Down syndrome in Ireland and to determine whether it was effective and acceptable for the families and clinicians involved. What this study adds to the existing knowledge JEMT + Sign has been shown to be effective for children with Down syndrome in the US when delivered under controlled research conditions, but has yet to be tested in 'real-world' clinical contexts. This study examined whether it could be implemented by trained clinicians in an Irish context, measured the effectiveness for parents and children and gathered the views of those taking part. What are the potential or actual clinical implications of this work? Clinicians working in a specialised service for people with Down syndrome valued the intervention. They found it effective for families that they had an established and trusting relationship with and whom they knew had the capacity to engage with the demands required. They found the structured coaching protocol to be beneficial for wider aspects of their work. Parents learned the skills and could apply them to the required accuracy criteria. The children in general increased their language and/or communication skills, although this cannot yet directly be attributed to the intervention. Further research is necessary to determine if JEMT + Sign can be delivered in other contexts, the long-term effects of the intervention and whether it is effective for wider groups of families.