An investigation into the effectiveness of functional behavioural assessment based interventions for sleep disturbance in children with Rare Genetic Neurodevelopmental Disorders (RGND).

Abstract

Sleep disturbance is recognized in the literature as a highly prevalent feature of Rare Genetic Neurodevelopmental Disorders (RGND) in children. Despite the considerable number of studies that have reported the presence of sleep difficulties within this cohort, limited attention has been paid to the treatment of these sleep problems, and even less so investigating the effectiveness of FBA-based behavioural interventions, and the outcomes of such treatment methods on general child behaviour and parental wellbeing. The purpose of this study was to determine whether FBA-based behavioural sleep interventions are effective with children with RGND, to examine the impact that intervention may have on secondary outcome variables pertaining to general child behaviour and parental wellbeing, sleep, and relationship satisfaction, and to ultimately establish the acceptability of this form of treatment amongst parents. Three children aged between six and 12 took part in the study. The study followed a multiple-baseline-within-participants design and included measures taken at pre- and post-intervention time-points. The FBA-based behavioural interventions were found to be effective in the treatment of the children’s sleep difficulties overall, with improvements observed across sleep onset latency, night wakings, and co-sleeping. General child behaviour, as measured by the VABS- II and the CBCL at pre- and post-treatment, had variable patterns of change across participants and across specific variables. Similarly, parental wellbeing, sleep, and relationship satisfaction, as measured at pre- and post-treatment by the DASS-21, PSQI, and the RQI, were mixed in their results. Despite the variability seen in these findings, the parents of all three children rated their acceptability of treatment highly on the TARF-R, and their post-treatment interviews reiterated their satisfaction with their child’s intervention, most aspects of the study process, and the secondary outcomes that they noticed. The present findings contribute to the limited existing literature concerning the utilization of FBA-based behavioural sleep intervention with children with RGND, and the secondary effects of treatment on general child behaviour and parental wellbeing following such interventions. However, future research should endevour to address and rectify the limitations encountered in the current study, in order to further the evidence-base to an even greater extent.