Final Meeting Report from the Roundtable Session on “Back to Sleep”

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Background

The roundtable session on Back to Sleep provided an opportunity for members in the research and health care fields to voice their professional views and findings concerning Sudden Infant Death Syndrome (SIDS) and Sudden Unexpected Death in Infants (SUDI). (See Appendix A for a list of participants.)

The Public Health Agency of Canada provided a meeting package including the following:

• Agenda (See Appendix B.)
• Chart outlining key issues related to SIDS and Safe Sleep
• Overviews on the Canadian Foundation for the Study of Infant Deaths (CFSID) and the Public Health Agency of Canada (PHAC)
• Key Research Papers/Reports
• Canadian and International Safe Sleep Resources/Guidelines
• Back to Sleep brochure
• Joint Statement Reducing the Risk of Sudden Infant Death Syndrome in Canada

The intention of the roundtable was not to come to consensus on all of the issues, but to assemble a spectrum of knowledge, evidence and insights that could serve as a foundation for future activities related to SIDS and Safe Sleep, including revisions to the Back to Sleep brochure.

The Back to Sleep brochure is primarily distributed to health centres, community based organizations and hospitals. The Public Health Agency of Canada currently distributes over 240,000 copies a year. Revisions are required not only to improve the current content but to expand the scope to include information on reducing the chances of a baby dying from SIDS or other SUDI (e.g. accidental death) during sleep time.

Introduction to the Roundtable

The facilitator welcomed the experts and encouraged their input and observations regarding modifiable risk factors and other factors as they relate to SIDS and SUDI. She indicated that their knowledge regarding epidemiology and pathophysiology would be crucial to guiding the discussion and assist with developing consistent messages to parents and caregivers of infants.

General Comments by Participants during Opening Introductions

There has been some reduction in infant deaths caused by SIDS during the past few years as a result of efforts to inform parents about modifiable risk factors. However, one participant felt that there has been an overemphasis on the study of SIDS epiphenomena (risk factors) and minimal support for basic research to define the actual biological underpinning of SIDS. Currently, there is not a lot of funding for research as SIDS is not classified as a “rare disease”.

It was noted that Quebec is developing a safe sleep leaflet and experts have reached consensus on the content. Quebec has decided to address the following:

• No smoking during pregnancy;
• Back to sleep;
• Safe sleeping environment – no pillow, no sofa sharing, no bedsharing if you are more tired than usual or if you have consumed drugs, medication or alcohol.

The Quebec leaflet will also include good practices already undertaken by parents, e.g., breastfeeding, room sharing, playing, and cuddling. Further information can be obtained from Dr. Aurore Côté.

It was decided that the PHAC brochure should focus on infant mortality as an issue, i.e., how to reduce risks and prevent deaths during sleep time in the first year of life.
It was also agreed that PHAC should consider developing a more detailed health care professional guide to accompany the new brochure.

Review of Chart and Open Discussion on Key Issues of SIDS and Safe Sleep

Prior to the roundtable, a chart was mailed to all participants for their review and comments. The chart was used during the roundtable to assist in prioritizing key issues related to SIDS and Safe Sleep. While reviewing the chart it was agreed that the following priority issues would be discussed in more detail during an open discussion:

1. Tobacco Use
2. Crib is Best
3. Positional Plagiocephaly
4. Breastfeeding

A detailed list of comments made can be found in Appendix C – Back to Sleep: Chart on Key Issues related to SIDS and Safe Sleep; however, the following summarizes the key points raised with respect to discrepancies, gaps, etc. Please note that these are perspectives and opinions raised by various participants, not points on which there was consensus, unless otherwise stated.

Cover

• The reference on the cover to three babies dying of SIDS per week is outdated.
• A more general statement that does not refer to statistics should be used on the cover.
• Consider not mentioning SIDS at all on the front cover and using a title such as “Safe Sleep for Babies” or “Back to Sleep: Safe Sleep for Babies” instead.
• The focus of the brochure needs to be clear – causes of infant death occurring during sleep – and determine the terminology to be used, taking into consideration how parents will interpret the information.
• Focus testing will be required to ensure that the messages in the new brochure effectively reach the intended audience.
• Limit the brochure to three or four key messages.

Sleeping Position

• It was agreed to reinforce “back is best” as a key message.
• It was also agreed that the following sentence should be deleted in the brochure: “Some babies have a medical problem that means they must sleep on their tummy.”

Positional Plagiocephaly (flat spots)

• Positional plagiocephaly should be mentioned briefly in the brochure, with a reference to another resource online.
• It was noted that, although this is an issue that should be addressed, too much information in the same brochure, along with too much emphasis on plagiocephaly will both weaken and diminish key messages regarding safe sleep.
• Flat spots are reversible and not as serious when compared to death due to an unsafe sleep position.
• Flat spots could be occurring more now because of infants spending extended periods of time in car seats, carriers and infant swings.
• “Tummy time” can be emphasized to reduce the risk of flat spots and encourage development (e.g., acquiring strength in neck muscles)
• While tummy time helps to reduce plagiocephaly, there is no evidence that it reduces any risk of sudden death.
• It is important to be clear about how much tummy time, when and how.
• Body image is an issue with parents so they will listen to these messages.

Baby Bedding

• Include some detail as to the types of cribs to look for.
• There may not be enough room in the parents' bedroom for a full-size crib – it will be important to offer guidance on alternatives.
• Low-income groups are less likely to have access to a crib.
• Avoid adult pillows and comforters.

Bedsharing / Crib is Best

• One message should be that there are different causes of death in babies that die during sleep, not just SIDS, but also due to an unsafe sleeping environment.
• The sleep location message should point out that a crib is the best and safest choice for the baby, especially if sharing the room with a parent.
• The main reasons people bed share are: they think it is the safest place for their baby, because they are breastfeeding, or feel they can provide more supervision of the baby if they're in the same bed. Another way to accomplish this is to room share without bedsharing.
• No adult bed is a safe place for an infant to sleep, so some participants felt there should be no mention of “how to bedshare safely.”
• Alternatively, another person felt that if bedsharing is mentioned, there should be a list of ways to lower the risk of accidents that typically happen as a result of bedsharing, e.g., avoid using tobacco, alcohol or other drugs, etc.
• It was pointed out that bedsharing and smoking should not be combined as they are also risks individually, although there is evidence of increased risk if you bedshare and smoke.
• Concern was then expressed that a harm reduction message about bedsharing will provide reassurance to parents that bedsharing is acceptable.
• One participant mentioned that there is no real evidence that the common sense harm reduction messages do in fact reduce harm.
• There will always be people who take extra precautions and then end up increasing risk, e.g., adding a bed rail to an adult bed, thereby causing entrapment.
• A safe sleeping environment may reduce the risk of SIDS and prevent other causes of infant death occurring during sleep.
• The CFSID has received feedback from parents on the Back to Sleep Brochure. Most parents didn't read the brochure because they felt that SIDS was something that could not happen to their family (denial). All parents felt that they may have read the brochure if it did not say “Risk” on the front cover, but rather “Safety”.
• Reference was made to the Fleming study entitled, Sudden infant death syndrome and sleeping position in pre-term and low birth weight infants: an opportunity for targeted intervention.¹

A Smoke- and Drug-Free Environment

• It was agreed that a new brochure should encourage a smoke-free environment before, during and after pregnancy (including smoking by the mother and others).
• It was agreed that smoking should be dealt with separately and not combined with alcohol and recreational drug use messages.
• The emphasis should be on pre-natal smoking because it carries a much higher risk of SIDS. There is an additive risk if there is post-natal exposure. A 100% smoke free environment is therefore recommended both in the pre-natal and post-natal periods, especially given that society's attitudes towards second-hand smoke are changing.
• It was noted that by continuing to smoke post-natal, the risk of SIDS is increased, especially during bed sharing time with an infant.
• The secondary tobacco-related message should be on second-hand smoke from people other than the mother.
• One individual pointed out that disadvantaged populations have had a higher risk of SIDS, in part because low income groups are more likely to smoke.
• The issue of other substance use was also raised since marijuana, crack, cocaine and heroin are also risks for increased SIDS. There are some parents who continue to use marijuana after they have stopped smoking tobacco, so these issues need to be treated separately.
• One roundtable participant felt that, given that drug and alcohol use is low in both pre-natal and post-natal periods, it may not be the best use of space to focus on these issues.
• Reference was made to the Australian pamphlet SIDS and Kids safe sleeping² and how tobacco use is dealt with in it.
• The RNAO Workgroup on Safe Infant Sleeping practices has submitted a request to develop an RNAO Best Practice Guideline on Safe Infant Sleeping Practices. [It is anticipated that the proposal will be accepted in the spring of 2009 and it may take a year to develop guidelines.]
• Messages concerning tobacco, alcohol and other drugs should be evidence-based; it was noted that the evidence of risk for SIDS is much greater for tobacco smoke.

Dressing Baby for Sleep
Keep your baby warm - not hot.

• The message on overheating should be removed as it is an issue only for infants placed on their stomachs to sleep.³

Breastfeeding

• There is some evidence that there is a protective effect of breastfeeding with respect to SIDS. Newer studies may change some of the balance of the weight of evidence on this.
• However, inclusion of this reference to breastfeeding was questioned as there may be confounding factors as to why the rate of SIDS is lower for breastfed babies, e.g., most mothers who breastfeed are not smokers.
• Some felt a breastfeeding message was inappropriate as it is not specific to this issue, while others thought that it is a simple, general message that fits.

Back Cover

No comments.

Gaps

The gaps in the current brochure were identified as:

• Pacifiers – Although the evidence is not substantive in this area, it does show that pacifier use during the last sleep may be associated with reduced risk of SIDS. Rather than actively promoting pacifier use, the group felt it would suffice to say that if your baby has started to use a pacifier, continue to offer it at sleep time.
• Room sharing – the evidence is not conclusive but it does seem to suggest that it offers protection.
• Room sharing should be added as a key message and reinforced as a good practice.
• Room size is a barrier to room sharing as many bedrooms do not have room for an adult bed and full-sized crib.
• Unsafe sleeping products – Emphasize product safety information (bassinets, playpens, car seats, bedding, etc.).
• Unsafe sleeping surfaces – A wide range of unsafe sleep surfaces should be addressed.

Wrap-up and Next Steps

The next steps in the process are as follows:

• Produce and circulate the meeting report
• Draft the revised brochure
• Consult with other health groups
• Circulate feedback to the roundtable group
• Focus test the brochure
• Finalize and produce the brochure.

Participants were encouraged to submit their suggestions for dissemination vehicles for the brochure, such as through the CFSID online course or nurses' organizations.

Given that there are many groups working on statements, guidelines and public messages on this issue, it was felt that it would be worthwhile letting stakeholders know that the brochure is being updated. Stakeholders will be asked to send in their resources. (e.g., the Hospital for Sick Kids is developing a resource.)

Appreciation was expressed for the participants' valuable input and ongoing involvement in advising PHAC on the issues surrounding safe sleep.

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1. Blair PS, Platt MW, Smith IJ, Fleming PJ. Sudden infant death syndrome and sleeping position in pre-term and low birth weight infants: an opportunity for targeted intervention. Arch Dis Child 2006; 91(2):101-6.
2. National SIDS Council of Australia (SIDS and Kids): SIDS and Kids safe sleeping. www.sidsandkids.org/documents/SidsSafeSleeping14ppa.pdf.  (Accessed November 8, 2008)
3. Mitchell E. Recommendations for sudden infant death syndrome prevention: a discussion document., Arch Dis Child. 2007 Feb;92(2):155-9. Review.