Sleep hygiene education and children with developmental disabilities: findings from a co-design study

By Dr J. E. Sutton. Dr J.C.Huws. Prof C. R. Burton (2019)

University of Chester and Bangor University (UK)

 

Journal of Intellectual Disabilities:  JID-18-0025.R1

ABSTRACT

This qualitative study develops a programme theory demonstrating the complexity embedded in sleep hygiene education (SHE) as an intervention to improve sleep problems in children with developmental disabilities (DD). In co-design workshops, eight parents and six sleep practitioners deliberated discussion themes developed from a thematic analysis of exploratory study data, guided by a ‘trigger’ podcast illuminating parents’ narratives of SHE. A SHE tool underpinned by programme theory abstracted to mid-range theories of change was developed. Analytical themes were proposed: the need to enhance the legitimation of children’s sleep problems and consider the nature of customisation, knowledge sharing, health expectation and impact of sleep service rationing and gaming strategies on implementation success. Policy and practice implications include a need to raise the public profile of children’s sleep problems and promote parental involvement in intervention implementation. Further research is needed to test out this theory-driven framework for evaluating SHE.

LAY SUMMARY

Sleep problems are often a daily reality for families of children with developmental disabilities (DD), and in the first instance professionals usually offer sleep hygiene education (SHE) which advises parents on behaviours that encourage quality sleep (e.g. bedtime routines and daily exercise).  Although SHE has been routinely used for years, there is a lack of research evidence which explains how it works to improve sleep and identifies the best way to deliver it. In the current economic climate it is important that only care which is well supported by research evidence and relevant to individual need is delivered, rather than advice which may be inappropriate or ineffective. Therefore this research project set out to build the knowledge base underpinning SHE. Funded by the Research Capacity Building Corporation (RCBC) Wales and hosted by Bangor University, three separate studies were undertaken which gradually developed a more in depth understanding of SHE.

In the first study, existing literature was reviewed, which identified what was already known about SHE and any gaps in understanding. This was followed by an exploratory study and a concluding co-design study which gathered and summarised the views of 15 parents of children with DD and 13 sleep professionals, on SHE and the best way to deliver it. This involved a series of one to one interviews, focus groups, creation of a podcast highlighting parent stories and lastly workshops which brought together parents and professionals as equal research partners.

The main output of this research project is a SHE tool for children with DD incorporating 43 separate advice points, which parents and professionals are advised to select from according to the findings of a comprehensive sleep assessment. This is underpinned by guidance which suggests how parents and professionals can: achieve a shared appreciation of sleep problems, ensure sleep services are well publicised and accessible, develop a supportive parent/professional working relationship, improve understanding of sleep problem causes, enhance the child’s sleep and ultimately improve the families’ quality of life. The intention is to develop this into a usable tool supported by an explanatory manual in the future.

In addition, this project’s original contribution to knowledge is a clear understanding of the complexity of SHE as a sleep problem intervention. It shows how SHE delivery should be underpinned by an ethos which legitimises or raises the validity of sleep problems in children with DD as a health need worthy of professional input. It demonstrates how SHE should always be customised according to the individual sleep problem of the child and family, and how parental and professional sleep problem knowledge should be valued and shared. It explains how SHE should be delivered within a climate of positive health expectation. Lastly, it uncovers how the way sleep services ration their services by narrowing referral criteria can affect the success of SHE delivery. In summary, research findings contribute to a clearer understanding of what SHE is, which can help inform and improve practice. Furthermore, it provides a structured framework of SHE which can be used in future research that evaluates the effectiveness of this sleep intervention.

Visit: https://journals.sagepub.com/doi/abs/10.1177/1744629518818950