Award Title: Preventing Sudden Unexpected Deaths in Infancy: an assessment and planning tool for families at increased risk
Funder: Department of Health and Social Care

Abstract: 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.

Lay Abstract: Aim   To develop a 'risk scoring and planning tool' for families to encourage safer sleep for babies at increased risk of Sudden and Unexpected Death in Infancy (SUDI).      Background   Every year in the UK, about 3-400 babies die suddenly and unexpectedly. Many of these deaths could be avoided by following safer sleep advice, widely promoted but difficult to follow for some families. Most of the babies who now die, are born to mothers under 25 in the most socially deprived groups. Bereaved families tell us the risks were often a result of a change in their normal routine when caring for the baby, for example when people visit, having a party, or when staying away from home. Our research suggests that understanding their baby s own level of risk and planning for safety during changes to the routine could save lives. The risk scoring and planning tool we propose here includes providing information on a website and to their phones about their baby s risk in certain situations and planning for safety during busy times.      Design and methods    We will develop a tool from information we already know has saved many babies  lives and check this works using information on current deaths of babies in England and from similar work being conducted in New Zealand. Health visitors, family nurses and especially parents will be invited to workshops where they will help us design the tool. It will show parents/carers how the risks to their baby change across different situations. They will be able to plan ahead for changes in routine to keep the baby safe. A picture of the plan will be sent to the parent/carer s mobile phone, that they can share with others, for example their partner.      We will test this tool out with health visitors, and family nurses to find out how it works in detail. We will give the tool to three teams of health visitors and family nurses who work with families in deprived areas of Bristol, UK. Interviews with them and family members will find out what they think of it and how they use it. Finally, we will write an application for a study to see how we can test the tool with more people.      Patient/Public involvement   We have spoken with over 100 parents about this project, at children s centres, public events, and via family support charities. They suggested we include other family members with planning and make the tool available in a website. They suggested “Baby Sleep Heroes” as the name for this website.      Dissemination   The results of the research will be fed back to all parents and professionals involved and then be published in scientific journals, discussed at conferences, and at public engagement events.

Research Activity Codes: 7.1 INDIVIDUAL CARE NEEDS
Health Categories: REPRODUCTIVE HEALTH AND CHILDBIRTH