Last year we reported that researchers at Aston University were working in partnership with Cerebra to understand how practical and effective behavioural sleep interventions are for children with neurodevelopmental conditions. Read more here.
The project aimed to examine whether tailored sleep interventions improve children’s sleep, daytime behaviour, and caregiver wellbeing. In this article Dr Georgie Agar, Principal Investigator, gives an update on the project.
Main aims of the project
Children with neurodevelopmental conditions (NDCs) often have poorer sleep than neurotypical children. Poor sleep can impact their mood and behaviour and increase anxiety and stress for their caregivers. Insomnia (difficulty falling asleep or staying asleep) is common in children with NDCs, and this is often treated with sleep hygiene recommendations and medication, such as melatonin.
However, these are often not seen as effective by caregivers, who might benefit from further support to implement behavioural sleep interventions. These strategies aim to reduce settling issues and overnight wakings, but they can be difficult for families to use.
Therefore, the main aim of this project was to explore caregiver attitudes towards, and experiences of, sleep interventions through focus groups.
What the project involved
Twenty-seven caregivers (range 30-53 years), with 26 identifying as female, attended one of six focus groups. Participants were caregivers to children aged 4-15 years with a range of NDCs. Caregivers attended an online focus group with a maximum of 6 in each group. We asked caregivers questions about their experiences of behavioural and medical sleep interventions. Caregivers also shared their experiences of accessing and implementing available sleep support, and their priorities for sleep interventions.
Key findings
The focus groups showed that caregivers have trouble accessing tailored sleep advice and receive little to no regular support in the implementation of strategies. Caregivers were frustrated that advice given was often generic and not tailored to the specific support needs of their child.
Poor sleep was linked to significant negative outcomes in the child with NDCs, such as low school attendance and worsening mental health. Disturbed sleep also impacted the wider family, with caregivers discussing the impact on siblings overnight and their own experiences, with many often having to give up employment. Caregivers were open about their distrust of medical professions and their reservations towards implementing behavioural sleep interventions.
Future impact
This research directly informed a research project within Birmingham Community Health Care NHS Trust looking at clinicians’ perspectives on sleep difficulties and interventions in children with NDCs. Taken together, these projects have identified areas where more sleep training and support are needed for both families and professionals.
The research assistant who worked on this project (Miriam Shabetai) has recently started her PhD looking at sleep in adolescents with mild-moderate intellectual disabilities. Look out for further details coming soon.
