Award Title: Preventable infant deaths: Improving uptake of safe sleep messages in high-risk families
Funder: Department of Health and Social Care

Abstract: 5.1 Research questionHow will an intervention targeted to families most at risk, improve safety for babies during sleep, and reduce Sudden and Unexpected Deaths in Infancy (SUDI)? 5.2 BackgroundAdvice for parents on safe sleep has reduced the incidence of SUDI in the general population over the last 3 decades, but less so for more deprived families. SUDI deaths have always been more common in these groups but now about two-thirds (approximately 200/300) occur in this group. An era of global case control studies has identified risk and protective factors for the infant sleep environment, which if adhered to, could reduce deaths further. Using what I have learned about the factors that influence decision making in high-risk families, I can now start to put this evidence into action in the form of a targeted intervention to reduce risk. 5.3 Aim and objectivesThe aim is to develop and evaluate a targeted intervention for improving uptake of safer sleep practices in families at higher risk for SUDI. In order to meet this aim, five work packages with the following objectives are proposed:	Examine the prevalence and population demographics of known risk factors of SUDI deaths in England since 2018 using data from the National Child Mortality Database (NCMD). 	Investigate the factors influencing decision-making for infant care in high-risk families (including fathers/partners and grandparents). 	Co-produce the support package with families, health professionals, academics, and health services commissioners. 	Conduct a Realist Evaluation study of the intervention. 	Write a protocol and funding application for a feasibility study to test intervention methods for assessing effectiveness and investigate scope for widening the intervention to include other child health related topics. 5.4 MethodsI will conduct comparative analyses of NCMD data to describe the prevalence of known risk factors present in recent unexpected infant deaths and compare those at high risk or normal risk of unexpected infant deaths. I will use qualitative thematic analysis of interviews with families. I will use co-production to develop the intervention, bringing together an intervention development team to work together to produce the content. Realist Evaluation methods will then allow me to explore the context, mechanisms and outcomes associated with the intervention. This will include observations, surveys, interviews and focus groups. Finally, I will investigate the most appropriate methodology for a future study and write a protocol and funding application. 5.5 Timelines for deliveryA paper describing the NCMD data will be published at the end of the first year. A paper with the findings from the mixed methods study on high-risk families and wider caregivers will be published at the end of the second year. Two other papers (one on co-production study and one on evaluation study) will be delivered in the fifth year. 5.6 Anticipated impactThe intervention will have the potential to improve sleep safety for infants in high-risk families and reduce infant deaths. Learning from this work will contribute to understanding the mechanisms of complex interventions for high-risk groups across a range of infant care practices.

Lay Abstract: 4.1 AimMy main aim is to develop an intervention to provide education for vulnerable families about infant sleep safety that will reduce the risks their babies are exposed to and ultimately reduce sudden and unexpected infant deaths. 4.2 BackgroundAnnually in the UK, approximately 300 babies under a year die suddenly and unexpectedly (Sudden Unexpected Death in Infancy or SUDI). While public health messages for safe sleep have worked well in the general population, the deaths that now happen are mostly in the most vulnerable families. Many of the deaths in these families could be prevented as the circumstances described almost always have known, avoidable risks present. Specific risks within the infant sleeping environment have been identified by many international studies although how common these are within a population of families in England with babies at high-risk of SUDI is less well known. Bristol University now runs the National Child Mortality Database (NCMD), which may provide some answers to these questions. My research suggests that a wider approach to sleep, combining safety, quality and coping skills for disrupted routines would be most acceptable to high-risk families and the people who support them. Most families I have spoken with have described scenarios that could increase the risk for babies as a result of carers trying to get enough sleep. My programme of research will build on the findings from my previous work into why some families don't follow the recommended advice. This will then shape the design and evaluation of a package of supportive education. 4.3 Design and methods usedThis fellowship has 5 work packages. First, I will work with the NCMD to describe how commonly known risk factors were present in recent English SUDI deaths. Second, I will conduct a survey and talk in depth with families of infants at higher risk of SUDI (especially partners and grandparents) to find out more about their understanding of safe sleep advice and infant care practices. The data from the NCMD work will provide risk information that I will use to guide the questions in the family interviews. Third, I will bring together a team of people including those who will use, deliver and commission the intervention to produce educational resources and information for high-risk families. Integrating different perspectives and expertise in this way will give us the best chance of creating an intervention that will work. Fourth, I will evaluate the new intervention to see how it works in real life, looking for how it works, for whom, in what context. Finally, I will look at whether this approach can resolve other problems within these vulnerable families and write an application for a study to look at whether the intervention is acceptable to families and how best to conduct a future study to test whether the intervention works.4.4 Patient/Public involvementI have directly spoken with over 100 parents and carers about this proposed research, through attending children's centre groups, public engagement activities, and via family support charities. The insights that they have shared with me have directly influenced how I will go about developing and testing the intervention, for example including partners and grandparents and considering sleep deprivation. The effects of poverty on this group can make life unpredictable and communication more difficult so I use both face to face and electronic methods to keep in touch. 4.5 DisseminationThis will include publishing findings and recommendations in peer reviewed journals, speaking at national and international conferences and appealing to a wider audience through public engagement activities.

Research Activity Codes: 3.1 PRIMARY PREVENTION INTERVENTIONS TO MODIFY BEHAVIOURS OR PROMOTE WELL-BEING;7.1 INDIVIDUAL CARE NEEDS
Health Categories: GENERIC HEALTH RELEVANCE