Positive Behavioural Support for Children with Intellectual and Developmental Disabilities in the UK: Enhancing Service Delivery, Stakeholder Engagement and Early Years, Proactive Supports for Families

Background and Research Questions

Relative to their typically developing peers, children with Intellectual and Developmental Disabilities (IDD) are at increased risk of developing behaviours that challenge (CB), which is associated with a range of negative impacts for both the child and their family. Positive Behavioural Support (PBS) has come to be recognised as the evidence-based intervention (framework) of choice for people with IDD of all ages who present or are at risk of presenting with CB. Several developments have occurred in recent years to define and support PBS implementation in ways that fit with a UK context. Building upon this body of work, this thesis explored three key questions within the overall context of seeking to enhance support for children with IDD at risk of CB: Firstly, how can delivery of high quality PBS be supported within services? Secondly, how can stakeholder engagement be maximised to enhance support for children with IDD and their families? Thirdly, how can proactive support for children with IDD and families be enhanced in the early years?

Methods and Results

Five empirical studies were completed grounded within an initial and ongoing discussion of literature. The first study (Chapter Two) comprised a survey of 100 child-focused practitioners in the UK to explore perceived competencies and training needs in PBS services. In addition to highlighting strengths in some competencies, the survey identified a particular need to better support practitioners with regards intervention and evaluation. The second study (Chapter Three) responded to this need and the limited range of outcomes that are typically included in PBS research. This study used a four-round Delphi process to create a PBS-evaluation framework that detailed 162 outcome domains structured across four systems levels. Two further studies were completed (Chapters Three and Four) that connected to PBS outcomes and stakeholder engagement. These studies explored use of a 2 novel-interview procedure based on Talking Mats to support family caregivers, and children and young people with IDD themselves, to identify priorities and goals for their own behavioural support. Findings from both studies supported the utility of this approach, and processes that related to engagement with children and partnership working with families were highlighted through a qualitative analysis. The final study (Chapter Seven) evaluated delivery of the Early Positive Approaches to Support (E-PAtS) programme (a logic model for which was presented in Chapter Six) through interviews with 35 caregivers raising a young child with IDD. Qualitative analysis of findings from this study highlighted positive outcomes for children and their families following attendance of the programme that connected to conceptual mechanisms that had been hypothesised.

Conclusions

Conclusions made throughout the thesis, and during the final discussion chapter, connect to the continued evolution of the definition and scope for PBS within the UK and effective implementation by services. Recognising and responding to the expertise and needs of a workforce, maintaining a systems-wide focus on outcomes that are consistent with the full aspirations of PBS, and ensuring a context of proactive partnership working with families and children appears critical.