Preventing Sudden Unexpected Deaths in Infancy: an assessment and planning tool for families at increased risk

Research question How does a risk scoring and planning tool support safer infant sleep during disrupted routines for infants at increased risk of SUDI?

Background Advice for parents on safe sleep has reduced the incidence of Sudden Unexpected Death in Infancy (SUDI) in the general population over the last 3 decades, but less so for families living in deprivation. About two-thirds of the deaths (~200/300) occur in this group. Disrupted routines influence decision-making in families at risk, and impact on sleep safety.

Incorporating planning for disruption with practical strategies to maintain safety for infants, could save lives.

Aims and Objectives The aim of the study is to refine and evaluate a risk scoring and planning tool for improving uptake of safer sleep practices in families at increased risk for SUDI, by: Developing a risk scoring system to quantify the potential risk in different infant sleeping environments. Developing an interface that the target group can use.

Conducting a process evaluation study to understand how the tool works in real world conditions. Conducting a scoping exercise to assess the potential for widening this type of tool to other infant safety topics.

Writing a protocol for a feasibility study to develop the methodology needed to test the effectiveness of the intervention.

Methods We will develop a risk scoring algorithm on distal factors (background characteristics and factors related to birth) and proximal factors (those surrounding the sleeping environment) using existing UK observational data.

Distal factors are largely unmodifiable, however the proximal ones are not and can quantify the potential risk in different environments.

External validation will be sought using the National Child Mortality Database (NCMD) and from a team collecting similar information in New Zealand.

The scoring system and planning tool interface will be embedded in a website being developed and used during a personalised planning activity to maintain safety in different sleeping environments, when routines are disrupted. An infographic of each plan will be sent to recipient s mobile device for sharing with others.

A process evaluation involving interviews with families and three health visitor/nursing teams working in deprived areas of Bristol, UK, will investigate the implementation, mechanisms of impact and behavioural outcomes associated with the intervention. We will explore how this approach might be used for other risk-based advice.

Finally, we will write a protocol for a feasibility study to develop the methodology needed to test the effectiveness of the tool.

Timelines for delivery Months 0-6: develop the algorithm (objective 1), prepare our evaluation protocol, secure ethics, establish research advisory groups. Months 4-7: Develop the user interface for the tool, and guidance about how to use it (objective 2). Months 7-12: Collect and analyse process evaluation data, refine the tool (objective 3).

Conduct a scoping exercise for further uses of this type of tool (objective 4). Months 13-15: write the feasibility study protocol (objective 5) and findings for publication.

Anticipated Impact and Dissemination This intervention will have the potential to improve uptake of life-saving advice in families with infants most at risk.