Training Family Carers In-Person and via Telehealth to Implement Function-Based Assessments and Interventions for Challenging Behaviour with Their Child with an Intellectual or Developmental Disability: An Exploration of Feasibility Within a UK Context

Background: Challenging behaviours (CBs) such as aggression, self-injury, or property destruction are commonly displayed by children with intellectual/developmental disabilities (IDDs). Such behaviours often develop early and persist without intervention, making effective early assessment and intervention important. The most widely used assessment and intervention approaches for CB for individuals with IDD are based upon Applied Behaviour Analysis (ABA) and rely on an understanding of the function of the individual's behaviour. However, there is little UK research examining such assessment and intervention approaches for young children with IDD who display CB, or the involvement of their families in this process. As a result, this thesis aimed to explore the evidence base for the use of function-based interventions (FBIs, i.e., behavioural interventions based on prior functional assessment [FA] identifying the contingencies which maintain CB) with young children with IDD and consider how such approaches can be utilised within a UK context via extensive collaboration (within clinical work) with family carers. Methodology: Previous literature relating to FBIs for children with IDD was examined in a systematic review and meta-analysis combining both single case and group design research (Chapter Two). In addition, literature relating to the use of telehealth (i.e., support provided across distance via technology which may provide a useful method of adapting approaches for a UK context where behavioural expertise is scarce) to train stakeholders such as family carers and teachers in ABA interventions was examined in a second systematic review (Chapter Three). Following this, two empirical studies utilising single case design methodology were conducted examining the feasibility of training family carers (in-person for four family carers in Chapter Four and via telehealth for two family carers in Chapter Five) to complete FAs and FBIs with their children with IDD. A final empirical study examined the social validity of the use of telehealth for behavioural approaches in the UK via a four round Delphi consultation with 11 professionals and six family carers. Results: Fifty-two single case and 8 group design articles were reviewed in Chapter Two and all of the FBIs in these articles achieved at least a medium effect size in relation to reductions in child CB (overall Tau U = 0.785, 95% CI: 0.729-0.840 for single case design interventions, and overall glass ∆ = 0.62, 95% CI: 0.94-0.29 for group design interventions). However, significant methodological quality issues were noted across the evidence base limiting the strength of conclusions. Chapter Three identified an emergent evidence base for the use of telehealth for training stakeholders (e.g., family carers, teachers, ABA tutors) in ABA approaches (such as FAs, FBIs, teaching techniques) across 20 studies. Training most often involved initial training sessions delivered via videoconferencing with supplemental in-vivo coaching during implementation of procedures. Training resulted in high but variable levels of trainee fidelity and positive outcomes for the focal persons supported by trainees (e.g., meaningful assessment outcomes, reduction in CB or increases in skills). However, methodological quality issues across the evidence base again limited the strength of conclusions for Chapter Three. Chapters Four and Five together demonstrated emergent feasibility of training family carers in FAs and FBIs in the UK where training was provided in-person (Chapter Four) and via telehealth (Chapter Five). Significant difficulties were encountered with recruitment and retention across both studies, limiting the generalisability and strength of the findings. Various challenges were encountered with the implementation of intervention procedures in Chapter Four, therefore Chapter Five focused on FA procedures only. However, family carers were able to implement FA procedures in both studies with greater than 80% fidelity overall. Social validity was found to be high across both studies, though not meeting feasibility criterion in Chapter Five. Finally, Chapter Six found that the use of telehealth for behavioural support was generally viewed favourably by the professionals and family carers who took part in the Delphi consultation. Consensus was reached on 36 items for professionals and 22 items for family carers relating to factors that would be influential to their likelihood of using telehealth for behavioural support. Both advantages (e.g., in relation to logistics, greater ease of involving multiple stakeholders) and barriers (e.g., relating to perceived quality of support, ethical concerns with data protection and confidentiality) were highlighted, with solutions to barriers suggested which involve both individual practitioner approaches (e.g., accessing training) and system level approaches (e.g., national guidance for the use of telehealth). Conclusion: Throughout this thesis, extensive collaboration with family carers was utilised at all stages, and approaches were adapted for the UK context in a number of ways including the use of telehealth. The evidence base for FBIs was noted to be extensive but with significant methodological limitations, and an emerging evidence base was identified for the use of telehealth to train stakeholders in ABA approaches, though again with significant methodological limitations. Emergent feasibility was demonstrated for training family carers both in-person and via telehealth in FA and FBI methodology, though small sample sizes and high participant drop out limits the generalisability of these findings. A number of challenges were encountered relating both to the practical implementation of approaches and the research evaluation, with tensions between clinical practice and research noted which had not previously been documented in the ABA literature. The social validity of the use of telehealth for behavioural support was confirmed via a Delphi consultation with professionals and family carers in which a number of useful recommendations were made for minimising barriers relating to the use of telehealth and maximising advantages for both practitioners and families. Suggestions are made for further research arising from the findings of this thesis, including the extension and refinement of procedures used for training family carers in order to further confirm feasibility and extend evaluation to the effectiveness of these approaches. Additional work could also further describe any research-practice tensions within ABA and consider ways to minimise these barriers in order to ensure that research is sensitive to clinical practice issues and therefore useful for the field