Abstract
Behavioural sleep problems are highly prevalent in children with neurodisability (ND) and can severely impact daytime function and family wellbeing. Management strategies are extrapolated from neurotypical populations and may not address the complex needs of children with ND. This study describes the development and pilot testing of a behavioural sleep intervention tailored for children with ND, aiming to determine feasibility and acceptability prior to use in a randomised controlled trial. A tailored behavioural sleep program for children with ND was developed using a collaborative framework that incorporated consumer and stakeholder consultation. Stakeholders included allied health professionals, paediatric sleep nurses and sleep specialists. The final program prototype was piloted with eight caregivers of children with ND recruited from a tertiary sleep clinic. Caregivers received the intervention through two psychologist led telehealth sessions. The intervention program comprised two sessions (1) Sleep Foundations and (2) Sleep Strategies and Relapse Prevention. Within pilot testing, Child Sleep Habits Questionnaire total scores reduced by 10%, 4 weeks after program completion. Greatest improvements were observed in sleep onset delay (22%), sleep duration (14.8%) and sleep anxiety (13.9%) subscales. Acceptability and feasibility of the program was high (84%). Parents found the program valuable, relevant and appropriately tailored for their child’s needs. This study demonstrates the use of a collaborative framework with consumer and stakeholder consultation to develop a tailored behavioural sleep program for children with ND. Pilot results show promise for efficacy of this intervention which is being evaluated in a multi-centre randomised controlled trial.