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

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.

Experiences of sleep hygiene education as an intervention for sleep problems in children with developmental disabilities: Findings from an exploratory study

“…A participatory methodology was adopted which focuses on research which is collaborative in design, views participants as equal research partners and incorporates an agenda for change (Creswell, ; Reason & Bradbury, ). This exploratory study was carried out as a preliminary step of a broader experience‐based co‐design study using the King's Fund () toolkit involving parents and sleep practitioners as co‐researchers (Sutton, Huws, Huws, & Burton, ). Exploratory study findings informed the development of joint stakeholder service improvement groups to advance understanding of SHE intervention complexity to improve delivery.…”

“…A scoping review of SHE and children with developmental disabilities (Sutton, ) revealed limited evaluative evidence and qualitative research exploring parents’ and sleep practitioners’ experiences. Most sleep intervention studies focused on multi‐component SHE (SHE combined with other behavioural interventions).…”

“…A scoping review of SHE and children with developmental disabilities (Sutton, 2017) and were limited to children with autistic spectrum disorder (Adkins et al, 2012) or were of poor methodological quality (Piazza, Fisher, & Sherer, 1997). One qualitative study explored sleep practitioner and parent views of multi-component SHE (Beresford, Stuttard, Clarke, Maddison, & Beecham, 2012) and reported facilitators to intervention success such as continued practitioner support, building trusting parent/practitioner relationships and barriers including parents' resilience, marital conflict and child's condition.…”

Support staff liaising effectively with professionals for the rational use of psychotropics for behaviours that challenge in adults with intellectual disabilities: Findings from a co-design event

“…Where co-production can involve public and service users for various outcomes and reasons, even outside of health care, EBCD is focused on improving health care service, emphasising designing experiences collaboratively. EBCD has been successfully applied in services for people with intellectual disabilities (ID) and vulnerable populations, caregivers and professionals to co-produce and co-design services for various outcomes (6)(7)(8). In Unwin et al (7) study, EBCD was used to collaborate with people with ID who were of ethnic minorities (Black and Asian) to develop tools to facilitate culturallysensitive communication and information sharing, service planning and delivery.…”

Use of storytelling and audio podcasts in qualitative research

“…Traditionally, EBCD involves creating a film from video recorded service user interviews, which service evaluators or co-designers use to promote discussion and identify areas for improvement. In an EBCD study which aimed to evaluate sleep services for children with developmental disabilities (DD) (Sutton et al, 2019) this approach was adapted by developing an audio podcast rather than visual film. Interviews with parents of children with DD and sleep problems were audio recorded and the author created an audio podcast from parent narrative accounts to stimulate quality improvement debate in an EBCD event.…”