Reframing from risk protection to engage families: words matter in safe sleep messaging. Professor Jeanine Young 29 April 2025

Transcript

Pam I'd like to start by acknowledging the traditional custodians of the lands upon which I live and work, the Jagera and Turrbal peoples, and pay my respect to Elders past, present, and emerging. And I'm absolutely delighted actually to have Professor Janine Young joining us tonight. Professor Young will be well known to many of you. She's from the Sunshine Coast University and also currently working with the Department of Health in Queensland, but has been a very long and leading presence in the field of infant sleep and safety throughout her professional life and has really had substantial impact on what's been happening in this space both nationally and internationally. Jeanine's work was celebrated in 2020 with the awarding of a Member of the Order of Australia, which was wonderful for us to see, all of us who care so much about this space, working with parents with infants. I do remember meeting with Janine, I would think in the mid-2000s when I was just setting out with my own work in this space. And right from that time, Janine was encouraging and supportive of me, and I've been very grateful for that support over the subsequent years. So, Janine, it's with gratitude for your presence, but more broadly, gratitude for your work over your professional life. That I now hand over to you to talk on the topic of reframing from risk to protection, words matter in safe sleep messaging. So thanks, Jeanine.

Jeanine Thank you very much, Pam, for that lovely welcome and introduction. So welcome, colleagues. My name is Jeanine Young. I'm a nurse, a midwife, a neonatal nurse and a maternal and child health researcher based at the University of the Sunshine Coast. And as Pam mentioned, I've been recently been very fortunate to be in the position of fulfilling a researcher dream of having a research program taken up by government and we're in that process of implementation. So I'm still very much feeling my way and sort of it's that careful what you wish for because now that real work is there to be done. So, I'd like to extend a grateful thanks to Dr. Pam Douglas and POSSUMS for this opportunity to share some of our research translation work around safer sleep messaging. My research program has centered on how we support infants and their families to thrive with studies which have investigated infant care practices used by contemporary families, the characteristics associated with sudden unexpected infant deaths, to inform prevention efforts in addition to targeted novel intervention studies to support families of infants with greater vulnerabilities. So today I'm going to share some of our— the work we've done with the Safer Infant Sleep guideline, which was co-designed with consumers, health professionals, and policy and guideline experts, which was based on best evidence risk minimization and nonjudgmental framing principles. We aimed to develop a guideline which acknowledged the unique needs of infants and the contemporary societies we live in to keep babies both close and safe.

Firstly, I acknowledge the First Nations people of Australia where this work was completed and in particular the Turrbal and Jagera people of of Meanjin and Barambin where I live and where I am today. I honor the Aboriginal and Torres Strait Islander peoples, their unique cultural and spiritual relationships to the land, water, and sea, and their rich contributions to society, including the birthing and nurturing of children. In this presentation, I'm going to share a systematic approach to developing a novel safer sleep policy based on risk minimisation, which was designed to address the identified gaps in health professional and family engagement, safe sleep messages and their rationale, and the importance of airway protection in potentially preventable deaths. And in doing this, consider the dynamic development of infants during their first year of life. We embedded framing to guide more effective written resources and verbal conversations. And these effective conversations around safe sleep enable and engage families around what they can practically do to create safer environments for babies rather than persisting with current fear-based messaging, which centers on a phenomenon such as sudden infant death syndrome that by definition we don't know the cause of. And in doing that, I'll share some of our parent, health professional, and industry resources arriving from this work.

From Risk Elimination to Risk Minimisation [00:06:09.07]

For context, in Australia we've seen sleep-related infant mortality reduced by 86% since the 1980s, attributed mainly to the recommendation to place babies on their backs to sleep. However, mortality reductions across Australia had plateaued since around 2008, with Queensland, one of the states tracking higher than the national average. Public health campaigns are designed to address external factors we can influence the most to reduce preventable deaths. Such campaigns should be continuously updated based on the latest evidence and effective messaging strategies. However, Australia's most recent Sleep Safe My Baby campaign was in 2012 and focused on 6 key infant care practices to reduce infant deaths which are supine or back sleep position, face clear, smoke-free, in a safe place to sleep, room sharing in bed, and breastfeeding. Our papers document the revision of the campaign back in 2012. However, what I would like you to note is the subtle change in wording between the original campaign messages and subsequent parent information that was produced. And I think this really calls to attention that when we're looking at translation, the importance of wording and in doing that, you know, the words we use matter. The original messaging of a safe sleep environment night and day and own safe sleep place in the same room as an adult caregiver for the first 6 to 12 months of life was crafted purposefully to avoid prescribing specific sleep locations.

In order to respect diverse sleep practices and circumstances, encourage discussions on safety and risk minimization strategies to address both room sharing and bed sharing environments. However, with the translation of messages over time into some parent resources, the inclusive message was lost and became only sleep baby in a safe cot in the parent's room, and this was never the intention. Recommending infants never share a sleep surface and only placing babies alone in a cot or in a bassinet is essentially a risk elimination approach. Evidence strongly suggests that risk elimination approaches are not effective as they close down conversations about the realities of shared sleep, which are likely to occur regardless of intention, and also then in doing so reduce opportunities to employ strategies which may help to make all environments a baby sleeps in safer, whether intentionally or not. In Queensland, we've supported a risk minimisation approach since our first statewide policy in 2008. And risk minimisation approaches recognize that no environment is riskfree. It's grounded on the principle that all parents have the right to good quality information, including both benefits and risks of practices they may use, to understand that information and to be supported to make informed decisions that meet the needs of their baby and the family and their family circumstances.

Risk minimisation supports planning for anywhere baby may sleep regardless of reason, including where families plan to or have no option but to share sleep and where they don't intend to co-sleep but do. Rather than advising parents to never bed share or to avoid shared sleep, which is risk elimination essentially, risk minimisation recognizes shared sleep is likely to occur, planned or not, and provides guidance on how to reduce risks when shared sleeping may occur. In short, risk elimination aims to prevent shared sleep altogether, while risk minimisation acknowledges the reality and focuses on making shared sleep as safe as possible whether parents plan to share sleep or not. However, we know that across Queensland and Australia, guidelines and health professional advice differs, which ultimately drives inconsistency and inequity and limits transparent conversations with parents about their plans for where babies will sleep. Not having a conversation is a lost opportunity that could have made a life of difference for that baby and family. And the language we use in these conversations is also just as important as the content itself. So, in 2021, with the benefit of a decade of evidence and improved understanding of the limitations of risk elimination approaches, we began an 18-month development process for a Safer Infant Sleep guideline to more clearly address the gaps identified by consumers and local and international research based on a risk minimization approach.

For discerning clinicians, understanding both the content and process in guide development is important, particularly if we intend them to be valued and used. So I'm very keen to share this process today with you. Our key collaborators driving this work include the Queensland Pediatric Quality Council and our Infant Mortality Subcommittee, the University of the Sunshine Coast, the Queensland Family and Child Commission, the Office of the State Coroner, and in particular, the Queensland Clinical Guidelines Group. We were also supported by many other key stakeholders, including our statewide networks, consumer groups, clinicians, and policy developers. We were fortunate to attract the support of the Queensland Clinical Guidelines Group, and the QCG, or Queensland Clinical Guidelines, are highly regarded here in Australia but also overseas due to robust processes commensurate with the Australian National Health and Medical Research Council, with a QCG guideline downloaded every 4.7 minutes around the world. Their approach ensures quality and rigor of content and process together with effective dissemination so that evidence-based, relevant, and practical information is accessible to clinicians in both community, acute and community settings to improve the experience of families. The final guidelines are then also supported by a short education presentation, a knowledge assessment, consumer information, and an implementation checklist.

This slide outlines our key steps driven by international and local evidence. We had begun writing short guides addressing safe infant sleep, inclined sleep, and shared sleep, which were then merged into a comprehensive clinical guideline with the assistance of the QCG team. Our purpose was to develop a guideline relevant for all infants based on evidence known to reduce the risk of sudden and unexpected death in infancy but which also highlighted key considerations for infants and their caregivers in specific circumstances. For example, shared sleep or caring for an infant in neonatal intensive care units, pediatric settings, and mental health facilities. We established a working party through an expression of interest with a final group of 120 contributors, including representatives of key stakeholder groups, including the Queensland Family and Child Commission, the ABA, the Australian College of Midwives, the Australian College of Pediatric and Child Health Nurses, Kidsafe, Red Nose. We importantly, we embedded the consumer co-design process from the beginning with several parent consumer groups, including our very large parent consumer organization, Little Sparklers and A Brave Life. And together with parent feedback from the Queensland Infant Care Practice Study and also evidence from the Queensland SUDI the CIDI study.

We undertook multiple feedback rounds, including 2 rounds of statewide consultation. Took an 18- month process, so it was worth— it was certainly a long gestation, but the guide was finally endorsed and published on the website in August '22 with a statewide launch to raise awareness in that September. International— so in terms of the evidence base informing the guideline, international and importantly local evidence from studies undertaken in Australia were incorporated to identify opportunities for prevention and the priority populations who would benefit the most. This included recommendations from the reviews of infant deaths by the Pediatric Quality Council and the Queensland SIDS Study. Which showed an overrepresentation of First Nations babies in infant mortality, that the role of social adversity had been underestimated in previous studies, and more targeted strategies to engage families with social vulnerabilities was also needed. The Queensland Infant Care Practice Study remains the largest infant care practice study currently conducted in Australia, and this study identified poor uptake of safe sleep recommendations and also highlighted the challenges many families face when they try to adopt safe sleep advice. The Queensland Peppypot program, we've also embedded the key principles used in this program relating to airway protection, which families reported being extremely useful in understanding the importance of creating a safe sleep environment for babies.

Public Health Context [00:15:46.20]

And so now I'm just going to very briefly share with you the result— some key results from both the Infant Care Practice Study and the PEPI-Pod program evaluations to illustrate why we needed a stronger paradigm shift to risk minimization to meet the needs of parents and their babies. The Queensland Infant Care Practice Study examined parent awareness and the uptake of the most recent safe sleep campaign messages available to parents and also provided a doctoral training opportunity for one of our PhD students, Ronni Cole. Now, Dr. Ronni Cole. This study essentially repeated our 2002 statewide benchmarking project, however, also added several fields to address contemporary infant care practice changes in that 15-year period. We used a cross-sectional survey design to describe contemporary infant care practices in a large Queensland cohort when baby was around 3 months of age, which is the peak of where where we see the peak of sudden unexpected deaths in infancy between 2 to 4 months. We recruited over 3,500 families— sorry, 3,300 families using birth notifications from the Queensland Registry of Births, Deaths and Marriages, which captures over 98% of all births as our sampling frame. So comprising, as I mentioned, the largest infant care practice are in Australia examining safe sleep practices to date.

We also asked some free text questions which we analyzed using content analysis. The median age of our mums was 32 and baby was 3.7 months. And the sample was representative of the birthing population, but were more likely to be partnered, Australian-born, first baby, and less likely to be Indigenous or a younger mom less than 25 years of age. These studies have been published now for those of you who are interested in reading further, but I'm going to provide you a summary of the key findings from the highlights of 5 of these publications. The Queensland Infant Care Practice Study identified the challenges many families face when they try to adopt safe sleep advice. Nearly a third of caregivers reported difficulty with at least one of our safe sleep recommendations in terms of the public health recommendations. 75% of parents reported bed sharing in the first 3 months of life, and for 57% of these families, it was usually unplanned. Those who reported challenges often proposed alternate strategies which may have inadvertently increased the risk of a suffocation or a sudden unexpected death in infancy. For example, sitting up on a sofa to breastfeed so that they didn't fall asleep lying down, often because they had been advised not to bed share.

They often did this as they were not comfortable talking with a health professional about how they were caring for their baby. And we often— further studies have since demonstrated that families often censor the information provided to health professionals if they feel that "It's a taboo practice." These quotes illustrate how parents wanted clear practical advice for what they considered a common and valued infant care practice and how they face mixed messages in the media, local hospital policy, and parent education, which favors an abstinence approach which they do not find practical to implement. Parents highlighted that this is often a taboo subject that many parents share sleep and for a variety of reasons and how they often felt guilty and would have preferred to have had open shared sleep discussions with their health professionals or that they believe that they should be receiving this information from their health professionals or public health organizations. Study findings strongly supported growing evidence that practical strategies based on risk minimization approaches will be more likely to engage parents in safer sleep practices as they balance their expectations with the realities of parenting and caring for their infant, particularly at night. These strategies need to be clearly and transparently embedded into guidelines and health professional and parent resources, such as this position statement that myself and my midwifery colleague Elaine Deitch developed for the Australian College of Midwives and also the ABA position statement on safe infant sleep.

We also incorporated learnings from this preliminary work in which we partnered with SIDI experts around the world and within Australia to develop priority messages to inform safe sleep campaigns at state and national level. And we took some— several of these— the key messages into our international statement that we've developed with ISPID, the International Society for the Prevention of Infant Death. We conducted a Delphi survey with 56 experts around the world and then took these priorities to a national group. And this expert consensus process established the top 4 themes to inform the next national safe sleep campaign as sleep position, sleep space, smoking, and shared sleep or surface sharing. So really to bring out the elephant in the room and to really address surface sharing. This priority setting study was published in 2020 in the Journal of Pediatrics and Child Health for those of you wanting to read more about the process that was used. So we certainly have the evidence for taking forward a national public health campaign for those national groups that are charged with that work to do. Before I describe the process of the SAFE for Infant Sleep guideline development, I just wanted to share the key principles embedded into the Queensland PEBI PEPPY POD program, which were adapted for use in the guideline.

And it's important to understand the evidence base from which the easy to breathe, safe to sleep principle, which is now embedded into the Safer Infant Sleep guideline, has come from. The PEPPY POD program is a program I introduced into Queensland in 2011 through a partnership with Change for Our Children New Zealand. To address the higher infant mortality experienced by First Nations communities, which was associated with smoke-exposed infants who were also in shared sleep environments. So for those of you who are not familiar with the PEPI Pod Program, pepe is Māori for baby and a pod is a protector of precious new life. The PEPI pod, as we will find in the natural world, so the PEPI Pod Program is provided to families in partnership by health services that care for them as 3 interlinked components. And that is an in-bed sleep space designed for a shared sleep environment, and that is a purpose-designed recyclable sleep space transformed into an infant bed with a tight-fitting mattress and bedding with materials designed and sourced from Aboriginal artists. And this Pepepod defines a zone of physical protection around a baby for infants who have an increased risk of suffocation.

And so that is essentially to decouple the— that association between an infant who's been smoke exposed during pregnancy and has less of an arousal response in a low oxygen environment and a shared sleep environment where there is an increased suffocation risk for those infants with with that who have a reduced arousal response where we see the greatest vulnerability and the greatest burden of mortality. The safe sleep education includes the rules of protection, which is a safety briefing and a Through the Tubes education for families to adapt to their family situation. And importantly, there's a role of the family. Families are invited to be peer communicators to spread what they've learned about protecting babies as they sleep. In order to extend the program's influence through priority social networks based on the diffusion of innovation theory. The key message from parents and health professionals in the evaluation that we conducted was that this program enabled safe sleep advice to become safe sleep action. The study results supported the Pepi Pod program was safe, acceptable to Indigenous families, and feasible to undertake in partnership with local services. It appeared that the program may reduce the incidence of shared— direct shared sleeping with a smoker by up to 57%, but not reducing shared sleep overall.

Many health services expressed a desire to integrate this program into health service delivery. However, sustained has not been secured since the end of the Peppypod— since the end of the Department of Comms.So while the program was acceptable and feasible to implement and safe in terms of no adverse events reported, we needed to know if the program was associated with less infant deaths. So we collaborated with the Queensland Pediatric Quality Council to use infant death data and our service data to answer the question of whether the program was associated with reduced infant mortality. The full report is now available online at the QPQC website, and this obviously has far more detail than what I will present today. However, I'll provide the highlights. And if any of those who— those of you who were involved in the study and had been— who participated through your organizations, particularly the Aboriginal and Torres Strait Islander Services, The data you returned was crucial, so thank you for your work, and I'm sharing that today. We wanted to know the answer to the question, was there a reduction in infant deaths following the trial of the PEPI-Pod program in Queensland? Well, in short, we mapped infant mortality and rates of program participation per postcode before and after the program introduction, including First Nations participation. This study demonstrated that there was a significant reduction in infant mortality rates of infants between ages of 28 days and 6 months in the Queensland population from 2014 onwards following the introduction of the program.

And the study IMR, or infant mortality rate, was significantly lower post-implementation for the whole Queensland population. For First Nations babies, the study IMR fell by 46%. The mortality gap between Indigenous and non-Indigenous fell from 3.2 times the rate to 2.1. However, a significant gap between Indigenous and non-Indigenous study IMR remained. This report showed a significant reduction in infant mortality rates of infants between the ages of 28 days and 6 months in the Queensland population from 2014 onwards. The study IMR before for Indigenous infants was more pronounced, which wasn't surprising given that was where we had the highest level of community participation and a large reduction in study IMR. And this suggests what might be achievable if the Pebbi Pod program were to be implemented to that degree in all Queensland priority populations. What was also estimated by the very clever biostatisticians and health economists was that if Queensland had had the same study IMR in 2014 to 2018 as it had in 2013 to '14, 328 infant deaths would've been expected instead of the 254 which occurred, which was a saving of 74 infants' lives over a 5-year period or 15 fewer deaths per year, which is significant when we're looking at 45 deaths per year in Queensland for sudden and unexpected deaths.

Using the value of a statistical life based on 15 lives saved per year, this is an estimated $69 million saved, which would be more now. That was based on 2022 quality of life years lost, and it would be now. So we took that to government as a bit of a no-brainer. So together with this knowledge from previous studies, including the Infant Care Practice Study and the PEPPI-Pod Program studies, the guideline development was framed by the understanding that while established scientific knowledge is the core of prevention, its translation into action at the interpersonal level needs to be responsive to diverse situations and that every caregiver, regardless of perceived risk, will benefit from informed and ongoing conversations about shared sleep, infant breathing, and strategies to promote safer infant sleep wherever a baby sleeps. We can create safer sleep environments by promoting health professional and parent understanding of mechanisms involving infant airway protection and breathing so that they understand the why and not just the what to do. The guide is intentionally entitled Safer Infant Sleep rather than Safe Infant Sleep to acknowledge that no environment is riskfree. You know, a cot is not automatically a safer place to place a baby.

Developing the Safer Infant Sleep Framework [00:30:36.18]

We have to make it safe. A strength-based approach supports two-way communication to support informed decision-making and practical solutions being found. In partnership with families. Professionals are encouraged to move beyond information giving to information sharing and consider infant vulnerabilities and caregiver experiences, circumstances, and perspectives. An infant's unique anatomy, physiology, and development in their first, first year is focused on the support of the infant airway and their brain and motor development. Supine sleep, the mechanisms of airway protection, and the impact of inclined sleep surfaces are also addressed. And we've also refocused from list to gist messaging so that principles are easier to remember and to apply to a variety of circumstances. So when we were looking at the revision of public health recommendations, you know, 6 is too many. People remember 3 to 4. As you might remember, we had a very effective campaign here in Australia around slip, slop, slap, and few people remember that there are 5 now, and that's slide and shade. But people mostly remember Sid the Seagull and the slip, slop, slap. So 3 to 4 messages or a key gist message or a memorable message that sticks is something that is the key take-home.

So the gist message, easy to breathe, safe to sleep, underpins our Queensland Peppypod program, which we have partnered with Change4OurChildren to deliver in Queensland and is the principle of which is also shared into the Pride one. The guide covers how to create a safe, clear space, place where the baby is placed to sleep alone or in a shared sleep environment. And as mentioned, over time, the original 2012 public health campaign message of Safe Place to Sleep Night and Day was adapted in lower-literacy brochures to the safest place for baby to sleep is in a cot beside their parent's bed. Which was not the intention and which is also too long, too wordy, and not helpful for families who do not use COTS for diverse reasons, for personal, cultural, socioeconomic, practical, structural, and situational, and emergency situations too. Additional resources to help our health professionals direct parents and the public to useful information are also included in the guide supplement. Such as our Best Practical Guide for the Design of Safe Infant Sleeping Environments, which we designed with the nursery product industry, and I'll share a few more soon. Risk minimisation is also a core element and is based on the premise that informed decision-making requires parent understanding of risks and benefits.

And to ensure infant safety, it's crucial to respect and support cultural norms and practices and consider family resources and circumstances. Two-way conversations with families provide opportunities to share information that can inform planning for infant sleep in a variety of situations, both planned and unplanned. And evidence from our Infant Care Practice Study and further work that's been done, particularly in culturally and linguistically diverse communities, demonstrate The families who are encouraged not to bed share under any circumstances frequently disengage from healthcare advice and often seek advice and support elsewhere, and in many cases implement strategies that they see as mitigating risk that may actually increase risk for their infants in some circumstances. We've incorporated the 5 A's model—ask, assess, advise, assist, and arrange—which provides a tiered response in assessment, support, and intervention to address the level of family each section includes risk minimisation strategies to create safer environments in diverse circumstances. A variety of options allow families to make informed decisions as they develop a safe sleep plan to suit their circumstances, the resources available to them, and which includes unexpected situations, which was, you know, is a factor that really comes out in when we are looking at our child death reviews.

The 5 A's model was well known by many of our midwifery and nursing colleagues with demonstrated success in areas such as prenatal smoking cessation. So it was a, it was a model that we wanted to build on. The universal need is for all families, additional need for some, and then more intensive support can be identified for those with significant need. Tailored interventions are dependent on infant vulnerability. An exposure to the external stressor and then family circumstances and the interaction of these factors. So understanding that triple risk model that we understand to be a basis when we're looking at preventable infant deaths. Clinicians use their judgment and reasoning to manage the needs of the family with additional clinical support to identify and target and decide if more targeted services are needed. Many— when we also looked at infant development and risk, most postnatal recommendations reiterate public health guidelines for safe sleep during a baby's first year. But what sets this guide apart is its focus on how the risk of sudden unexpected death in infancy evolves as the infant grows and interacts with their environment. It's not, here's a set of recommendations and that's it for the next 12 months.

It's trying to get to the hub of the kernel of what is it about airway protection that is important as an infant develops during their first— dynamically through their first year and interacts with their environment in diverse ways. And then, for example, helping families understand infant airway protection and their motor development enables them to adapt their baby's care and sleep environment accordingly. For example, many families might use wrapping to settle their baby, which is a wonderful way to help support sleep. However, a key consideration is discontinuing, discontinuing swaddling or wrapping once a baby shows signs of rolling, reducing the risk of entrapment and suffocation, particularly when babies are first learning how to roll. For hospitalized infants, we've included a decision algorithm. The main question to ask in applying the safer sleep principles is, does the risk of SUDI outweigh the benefits of another practice that may have been introduced to managing infants' medical needs. And for some babies, there might be the benefits of non-supine or incline, incline sleep positions, but they tend to be very rare. Recommendations in this guideline are intended to underpin local policies and procedures relevant to the care of infants in acute hospital and community settings within the resources available.

Co-designing this guideline and working closely with several large consumer groups such as Little Sparklers and the Australian Breastfeeding Association was key to guideline success. Just as an example, within 72 hours of the guideline being posted on the Little Sparklers website by their exec team, media metrics indicated a reach of 58,000 families with over 5,000 interactive interactions. And Little Sparklers shared the experience in their quotes. It was an honor to be part of the process with this skillful team, not just because of their knowledge and experience, but because throughout the process it was clear what high value and regard was placed on our voices as consumers. I'm just going to share some of the comments just to demonstrate the importance of of co-design within public health recommendations and any messaging where the target audience is particularly families and also families facing specific vulnerabilities. The over— the response was overwhelmingly positive. So that true co-design, not just consultation, might take a bit longer, but it was certainly worth it. And this has led to further collaborative work supporting consumer-led resources. In summary, our aim was to promote consistency in messages families receive, particularly by making risk minimisation transparent and providing tools and resources to support meaningful conversations between health professionals and parents.

Translation into practice [00:39:29.24]

And we have further work to do in updating our current resources and local policies to align more closely with the guide, and this includes specific local policies around inpatient, pediatric and neonatal care settings, residential care settings and community settings. And I've had the pleasure of working with some of them. For example, the Brisbane Youth Services recently set up a residential facility for young teen mums with babies, and so they've really taken on board and embedded a risk minimisation approach into their policy in support of these young mums. So over the years we had begun this work of embedding this more transparent risk minimisation approach such as the 2014 Australian College of Midwives position statement on bed sharing and co-sleeping and these airway protection principles used in the Peppy Pod program and embedded in now into the Safer Sleep guideline have also been highlighted in the Best Practice Guide for the Design of Infant Sleep Environments, which was sponsored by the ACCC, the Australian Commission— what is it? Australian Council— ACCC, sorry, it's too late in the evening, I can't remember what the ACCC stands for, how embarrassing. And we've also just commenced work on the revision of the Academy of Breastfeeding Medicine protocol on bed sharing and breastfeeding, which is an exciting piece of work that— led by Melissa Bartek from Harvard, which will contain a clear risk minimization approach.

And in Queensland, we're also in the process of revising clinical pathways, and these have identified numerous opportunities to improve the wording and referral processes. Risk minimization has also been embedded into the Australian Breastfeeding Association resources for some time. And I was honored to be part of those revisions. We are designing a specific Safer Shared Sleep resource with Little Sparklers, a larger parent consumer group, which their CEO Carly Grubb will be revising and testing as part of her higher degree studies. Red Nose also used to have a more detailed information statement on shared sleep with a baby which supported risk minimisation and was written in neutral language. Language. However, recently we've just noticed that we're going to have to revisit some of the more later resources which has more prescriptive directive language which families have flagged through recent posts that it sort of sometimes sends conflicting messages. So again, you know, having parents involved in co-design is really important. The principles of airway protection based on the Through the Tubes Pinch Bend, Cover, Press model has also been embedded into— is also translatable into a variety of circumstances. So we've incorporated this practical messaging risk minimisation into emergency support resources for families with young babies who've been displaced by natural disaster or emergency situations.

And we had the pleasure of working through that collaboration with UniSC and the wonderful Carleen Gribble from the University of Western Sydney who was doing that work on behalf of the ABA, and we had Kidsafe involved in that, which was great. And you can find numerous animations and downloadable guides on the ABA site for supporting infants and families in evacuation centers, particularly around infant feeding, but also the preparation and post-recovery from disasters. And now those also include Safer Sleep in Disasters. And I was also really delighted to work with the Raising Children's Network, which is part of the Parenting Research Center, to revise and develop several of their safer sleep parent information sources, including Co-Sleeping with Your Baby, and to develop a specific Airway Protection During Sleep resource suitable for parents and carers to help disseminate the concept of airway protection in the community. And the Raising Children's Network is a main government-supported parent information hub. They now support a clearer risk minimisation approach with neutral, non-judgmental language and strategies for families to create safer infant sleep environments in planned or unplanned sleep circumstances. So, you know, removal of those words such as when parents choose to bed share.

And just by saying when shared sleeping occurs, to really acknowledge that sleeping may be culturally and socially valued, it may be intended, it also may occur unintended. So if we neutralize that language, it takes away from— it removes the stigma and guilt that families feel and they can really then engage with the messages Just I wanted to share that despite progress in integrating risk minimisation into guidelines, there still remains a gap in delivering suitable information to families. And so led by Karli and Little Sparklers, a collaboration is developing for a Safer Shared Sleep visual guide. And to inform this guide, Karli's conducted an integrative review to determine what information parents need to reduce risks when sharing a sleep surface with an infant under 12 months. And this review has focused on 4 key areas: challenges in creating safer shared environments, the strategies parents use, the additional challenges for at-risk families, and parents' information needs regarding shared sleep. I might have clicked ahead a little bit quicker. We followed the Widomoor and Maffels framework for integrative reviews with a detailed inclusion and exclusion criteria to review studies internationally published in the last 10 years to build on the work of a review done by Trina Summer Ward from the US in 2014.

And of the 597 studies Sorry, it was 56 here. We're updating that now. We've just updated it. In fact, there are 60 studies which met the review purpose and eligibility criteria. The results of these 60 studies could be grouped into 4 domains, each with 3 to 5 themes. And I don't expect you to be able to read these, but I just wanted to highlight where this is actually being submitted this week for publication. But just wanted to highlight the key take-home messages. Parents struggle to find practical, nonjudgmental guidance on minimizing risks in shared sleep environments. Many feel unprepared for the realities of infant sleep, leading to unintentional bed sharing. The concerns for both safety and comfort often drive parents to create their own solutions, while safe sleep messages may not effectively reach other caregivers. And sleep safety tends to be deprioritized during daytime naps and disrupted routines. Parents and caregivers actively seek strategies to address safe sleep safety challenges, and they do rely— they believe they should be able to rely on health professionals for guidance in preparing for shared sleep regardless of intent, and they emphasize the importance of community and societal support in managing these risks.

Families with known risk factors frequently share sleep intentionally or not, that are the target of very much risk elimination messaging. And with parents of babies with additional needs, keeping their babies close for monitoring and comfort is a key factor. Adolescent families face unique challenges balancing their transition into adulthood and parenthood. And portable sleep space programs and the broader family-centered approach help navigate risks during both routine and disrupted care situations. So the take-home is that parents and caregivers seek clear, consistent, and nonjudgmental guidance that aligns across healthcare providers, family, and social networks. And parents do value the education that extends to their entire family, assisting them to create safer environments and extend those support networks beyond that neonatal stage through key growth transitions. So really considering an infant in their first year of life. Evidence from this review strongly indicates that contemporary parents want and need strategies on how to share sleep more safely regardless of risk profile and intention, given that shared sleep is likely planned or not. So they want practical, nonjudgmental guidance. Share— we want that acknowledgement that shared sleep happens regardless of intention. Safe sleep messages must reach all caregivers, and health professionals do play a crucial role, and family and community support matters.

Importantly, sharing sleep I think is another take-home which is often a conflated sort of message is that sharing information about shared sleep is not promotion of a practice or non-promotion of a practice. Rather, it's necessary to inform evidence-based decision-making for— in planning for safer infant sleep for individual family circumstances. So I would sort of encourage you, those of you who are health professionals, to think on that in the way messaging is conveyed. Also, we've just had a publication that's just been published that many of you working in this space in Australia who may be coming as an audience from different states and territories which have not yet taken on a risk minimisation approach, you might be interested in this paper. So, you know, we've shared the international evidence supporting risk minimisation, but it's another thing getting that translated into policy. So that consistency in such messaging in Australia remains that key question, given that many families share sleep intentionally or not. So I had the pleasure of working with Lavita de Souza and two of her PhD students at the moment And this study that I'll briefly share with you is led by Sarah Cruz from Monash, where we assisted— systematically evaluated Australian infant sleep recommendations, highlighting the importance of framing a neutral language in addressing this complex issue.

And while this full study warrants a dedicated presentation, these findings emphasize the need for clear evidence-based communication So Sarah's really wanted me to be able to share the highlights to illustrate how words matter in conveying the public health messages. But you can read that full publication in Frontiers of Communication if you're interested. Just to let you— just to give a very quick overview of the methodology, we— the documents were identified by researchers with subject matter expertise and through a systematic webpage search. A total of 32 eligible documents were included from 26 organizations. If an organization had separate documents for shared sleeping in addition to safe sleeping, both documents were included and reviewed together. And then the consistency of the recommendations were evaluated against the ISPID guidelines, which is the International Society for the Prevention of Infant Death. The approach taken to discuss shared sleep risk minimisation first to risk elimination was also evaluated using a detailed coding framework where we looked at scoring the engagement in shared sleep, provision of risk minimisation messaging, benefits and risks of shared sleeping, and if this were presented in a balanced way, the acknowledgement of diverse circumstances which lead to shared sleep, the acknowledgement of the association between breastfeeding and bed sharing, and then the framing or language used around shared sleep.

For example, was prescriptive language of 'never,' 'should not,' parents making choices versus neutral language involving presentation of facts known to provide families with information needed to create a sleep plan to meet their individual circumstances. No organisation's documents contradicted the recommendations, although a number of our recommendations varied. Organizational approaches to shared shared sleep ranged from risk elimination to risk minimisation. Less than half the organizations acknowledged familial, cultural, or logistical preferences for shared sleep or the possibility of unintentional shared sleep. It was just do not bed share. Less than half the organizations provided strategies for safer shared sleep. Most organizations recommended breastfeeding but did not discuss its bidirectional link with shared sleep. So no strategies around how to create safer environments for breastfeeding families. Many use prescriptive directives of never, should not, or messaging perceived by parents as judgmental. For example, not recommended, or if you choose to bed share. Consistent messaging on infant safer sleep is needed to prevent that public health confusion, and risk minimization with clearer framed and neutral messaging allows for informed choice and it was reviewed by independent reviewers too, but we were delighted to see that the QCG, the Australian College of Midwives, the ABA, and the Raising Children's Network were all scored highly in terms of the language used in particular.

So using neutral language supportive of informed decision-making and respectful of diverse families circumstances. So just in wrapping up, we've been fortunate in Queensland to have secured support to progress efforts in reducing infant mortality. In June 2024, the Queensland Premier announced a $502 million commitment, the Putting Queensland Kids First strategy, which named the Queensland Peppypod Program as a core element in the $11 million material basics package with a funding commitment over the for the next 4 years. We're just working out what the new government in Queensland is, what the impacts of that will be. However, we've been told that the Putting Queensland Kids First strategy is still to be implemented, which is great. So while the Peppy Pod program is provided through a model of targeted universalism for those babies who need additional airway protection due to smoking exposure. Infant airway protection is also embedded into the safe sleep education for all families and supported by our Safe for Infant Sleep clinical guideline. And we're just about to embark in the updating of our e-learning program with our clinical skills development service. So that's such an approach, assists us to keep babies both close and safe, which is really important for building, for neuroprotective care and for building babies' brains.

So, I have no doubt that together with a concerted integrated strategy, we can reduce preventable infant deaths. So, in summary, it's been a privilege to share what we've learned about how to make safer sleep messaging more effective and practical for families. And I'd like to leave you with these take-home messages. Words matter. The choices we make in how we present ideas, these ideas can influence how people think, feel, and act, and so it's not just what we say but how we say it. And infant sleep and safe sleep are frequent topics of conversation between parents and families and health professionals. So that evidence strongly suggests that a risk minimisation approach using nonjudgmental language is far more likely to engage families with in conversations which will assist them to create safer sleep safe environments wherever a baby sleeps compared to a never bed share risk elimination approach. Strength-based approaches are key. We need to partner with families who are experts on their baby and in their life and provide opportunities for transparent conversations using enabling language and gist messaging, which helps them plan and find solutions that will work within their unique situation and resources available to them.

And I encourage all of you in positions of influence to look at your guidelines and parent information against some of these principles and see if improvements can be made to better support families. And I have no doubt that together we can reduce these preventable infant deaths. So on behalf of our team, I'd like to extend a heartfelt thank you and express my gratitude to a very large consultation group of over 120 health professionals, consumers, and stakeholder groups who gave of their time to feedback on the Safe Infant Sleep guideline, all of our partners who've collaborated on the studies we've conducted and the resources we've been developing over the last few years. And it's the possibility of preventing future infant deaths that has driven this work. So thank you for taking the time to participate in this presentation wherever you may be, and I hope the information's useful. Useful to your practice. And my contact information is there if you want to contact me at UniSC or via Pam Douglas and Possums. So thank you, Pam, and everyone for attending.

Questions [00:58:21.04] Thanks, Janine. Thank you so much for sharing with us such

extraordinarily important work. So was there anyone who'd like to unmute and come in with a question for Janine?

Speaker 3

Hello, Janine. My name's Julie. I'm a NICU nurse in Sydney. Amazing work. And I'm just sitting here floored at how much work goes into changing guidelines and moving practice along the continuum. So good on you for having the stamina to do it. So what came into my head was, once we start, I can see this working beautifully in the community and in people's homes. But what about the hospital and the hospital bed and the discharge education that we're giving people from maternity and NICUs? Did Queensland Health— do your policies and guidelines sort of embrace that, or would they allow or encompass that? Because at some point there are going to be people who say, look, why can't I have my baby in bed with me post-cesarean the whole time?

Jeanine Look, we've actually have done a— we've actually looked at the three-sided cots and we've trialed them here in Queensland with the support of Sunshine Coast University Hospital. So we actually imported the Marbum, it was an Italian design that would work with Hill-Rom beds. And I think the very— the first time they tried to do— look at a three-sided cot for postnatal environment, in particular was in WA, but they were the older version. I think they were the Bristol-made cots, which actually clip on, and they posed an issue for responding to a woman in an emergency, getting the cot off. So these, the Marburn ones, where you can flip the side off and move it away quickly so the baby had an independent sleep space, but the side dropped down. So we actually did that pilot, still yet to write that up. Actually, COVID happened. COVID happened. But having said that, we— that protocol was also taken up in the ACT by Calvin Hospital Bruce, who also did a pilot. And we were also using the First Days Peppy Pods. So the First Days Peppy Pods provide a postnatal environment, so building on that community aspect.

And we have Redcliffe Hospital and the Royal Brisbane and Women's Hospital in Melbourne have implemented that as part of business as usual. So if that is something that you're interested in for postnatal wards, we've actually got the safety briefings and in fact I've just sent those out to Redcliffe Hospital who are about to purchase their First Days Cappy Pods to start those conversations for those families where we would normally say, you know, I think one of the issues we have with health professionals is, you know, our current, sorry, with our public health recommendations, not health professionals, As health professionals, we've got recommendations that say if there are risk factors, we say we do not recommend that. And then health professionals working with families where we know those shared sleep will occur, intended or not, we look in our toolkit and we go, there's nothing there. I have to say this is what you should and shouldn't do, and we need to do better. And this is actually part of that— that work is what we're working on now in collaboration with those groups. And so They'll be embedded into our Safer Infant Sleep e-learning program, which we have literally just got sign-off that we're able to start to revise and develop, and we'll be embedding the Pebbi Pod program principles. We've worked with the ACCC and the Office of Fair Trading, so the independent sleep space now meets the Australian, the new sleep standards. As well because it is not a bassinet. So it's— yeah, so we've gone through that for us to be able to engage in that program, all the processes, and Queensland Health has come on that journey and has now embedded it. So sorry if I'm— if that helps.

Speaker 3 No, that was wonderful. It seems like Queensland's really leading the world.

Pam I think so, actually, and much of that is due to Janine and Janine's leadership of the teams she's gathered around her, in my view.

Jeanine Thank you. But it's building on, on work in terms of if you're working in the NICU, the work actually a colleague of mine from the UK, Dr. Anna Pease, who works for— who used to be my supervisor when I did my PhD a long time, 100 years ago. She did her PhD in the University of Bristol with my supervisors, and she's been working with the Baby Sleep Project. And she's done specific work in neonatal intensive care and special care baby units around that journey in safe sleep and how we can habituate babies to sleep on their backs as soon as they're medically well and out of oxygen. We've tried, you know, we've built those principles into the Safer Sleep guideline, and particularly for babies who then have medical a medical need. And I think focusing on the airway protection then also means rather than a vulnerable infant, but it's more about the infant airway protection we're finding is a lot more successful in engaging families because it's something that all babies need. All babies need to breathe. Once the umbilical cord's cut, they need to be able to breathe on their own. And therefore, it reduces the otherism of of, you know, SIDS or sudden unexpected death occurs for more vulnerable babies. Or if you're a baby of a smoker, you're going to have an increased risk, and therefore, you know, you shouldn't do this, this, and this. So if we focus on the baby, we can then apply those principles wherever a baby sleeps, whether that's in a cot, in a sling, in a car seat, in arms breastfeeding, and, you know, so that— and, uh, or in a shared sleep environment. So it's sort of trying to reduce them, reduce the recommendations to something that parents will take on, be able to remember more easily at 2 o'clock in the morning or when they've gone to grandad's and forgot to pack the portacot or they're in an emergency situation, you know, like our recent cyclone in Queensland.

Pam Thanks, Janine. And I know we need to let you go. Just one more question. If we're dealing with families and wish to direct them to a portable sleep space or Peppypod use, How do we do that?

Jeanine If you're working in Queensland, if you're based in Queensland, we— in the next 3 to 4 months, we should have that program up and going in most of the HHSs. There will be a procurement process and we'll be working with our midwifery care teams and in warm handovers into maternal and child health. So as part of the Putting Queensland Kids First investment, there was also a lot of funding that went into sustained home visiting. So we've got this unique opportunity to really join the links. If you're coming from other states and territories, you will find that there are services that have engaged in the program. We've actually got the program running in some services including government, Achoos, the Aboriginal-controlled organizations, and some NGOs. As I mentioned, Royal Women's Hospital in Melbourne provide them for their— for postnatal women, but then also if a family is in need in terms of smoke exposure. I think one of the things to be really clear about with the program though is it's not for all families. If you're a mom of a non-smoker, if you're— if a mom is a non-smoking mom and is a breastfeeding mom, they're really low risk.

They just need recommendations around or strategies around reducing risk in shared sleep environments. And the Peppypod program is specifically designed to decouple shared sleep from a risk factor such as— or a vulnerable baby from— and that vulnerability arising from smoke exposure or a substance or alcohol exposure, particularly during pregnancy. And we know those babies respond differently to lower oxygen environments and their arousal is reduced. And also those families often have challenges in their social and sleep situations with overcrowding or transient accommodation or many multiple bed sharers or managing other children in the beds. So it's more, it's more for those babies at risk, but all families will benefit from the recommendations in terms of the strategies and a risk minimisation approach. Or so our parents have told us.

Pam Yes, yes, thanks, Janine. Thank you. So there was no other burning question for Janine before we go? I think let's leave it there. And again, Janine, I'd like to thank you so much for making the time to speak to us. Us tonight, tonight your time on such an important topic for those of us who care so deeply about the wellbeing of parents with babies and the wellbeing of those babies. So thank you very much, thank you to your teams and really grateful to you, Jeanine. Have a good evening and thanks everybody for tuning in.