Anna Pease, Research Fellow, University of Bristol
The recent publication of the Darzi Report lays bare some of the fundamental needs for a healthy population. The report describes health visitors as “crucial to development in the first five years of life” and the drop in numbers as a missed opportunity to intervene early. It’s something that we, the infant health research team at the Centre for Academic Child Health have known for many years.
Research involving health visitors, midwives and specialist maternity and postnatal care professionals has been instrumental in bringing down infant mortality rates over the last 30 years, particularly when it comes to reducing the risks for sudden infant death syndrome or SIDS. The UK’s first Back to Sleep Campaign got going in 1991 thanks to media attention but it remained at the heart of advice for families due to the unwavering efforts of those health professionals, in homes every day, building trust, delivering advice and guidance for families. Our SIDS rates have been declining, albeit slowly, ever since.
In 2022, we worked with the NCMD to publish a thematic report on sudden and unexpected deaths in infancy and childhood, showing that SIDS rates for some groups seem to be harder to change than others, and that up to 75% of current deaths have at least one known risk factor present in the sleep environment. Families with infants who were born small, low birthweight, smoke-exposed or where there is overcrowding, social care involvement or living in a deprived area now shoulder the majority of infant deaths. New ways of engagement with and support for these families is needed to tackle both these background risks and to tailor safer sleep advice to the individual circumstances of each family.
We have been developing an evidence base for how best to share information about safer sleep, particularly for families with infants at increased risk. Since 2012 we have been conducting surveys and interviews with both health professionals and families in our priority group. In 2021 we began developing an intervention to support professionals and families with following safer sleep advice where the risks are higher, and called it The Baby Sleep Project.
We worked together with health professionals to harvest and distil existing expertise in tricky conversations about risk into a conversation skills training package. We developed a risk assessment and planning tool to explain the individual risks to an infant and support families with planning for safety, especially during disruption to the normal routine. We worked closely with a group of four mothers who were living in a mother and baby unit in Bristol, to create two new animations – one for health professionals explaining how best to communicate safer sleep, and one for families explaining the physiological needs of a sleeping infant and airway protection. We have also worked with families, Bliss, The Lullaby Trust and a neonatal team in Leicester to develop a milestones card in multiple languages for modelling safer sleep on the neonatal unit. All of these resources and materials are being evaluated across eight regions of England at the moment, with the findings to be ready by mid-2025.
What’s clear to me from all of this work is that families have a right to evidence-based advice about how to protect their infants, delivered in ways that work for them. They prioritise trusted and credible sources of information, they want to know how or why the messages work to provide protection and they want to have the hard work of looking after a young baby to be acknowledged. Every parent or carer finds themselves in situations where something has changed, sleep is harder to come by, or a baby is more unsettled than usual. They need our support, not our judgement, and a conversation with a trusted health professional can support them with planning for safety during those times.
We can only expect those conversations to be effective in a context where health professionals are confident and motivated to have them, with reasonable workloads, decent pay and access to training and development. Finally, individual level interventions that rely on human behaviour change are important but can only go so far – if we are serious about reducing the inequalities in infant mortality, we must also bring down child poverty, provide good quality housing, stable finances and access to effective mental health support. As Professor David Gordon points out, poverty is a choice and it costs about the same to keep poverty as to eliminate it.
In the meantime, projects like The Baby Sleep Project have the potential to support families to keep their babies safe during sleep, through planning, increasing understanding about how safer sleep works, and tailoring support to match the needs of each family.
For more information on the Baby Sleep Project, please contact:
Dr Anna Pease
Research Fellow, University of Bristol
The Baby Sleep Project is a series of research projects run at the University of Bristol. The research helps support families with sleep and help to keep babies safe from Sudden Infant Death Syndrome, or SIDS.
