Developing an Intervention to Improve Infant Safety and Well-being

Dr Anna Pease

Senior Research Associate, University of Bristol

Baby Friendly Conference 2019Glasgow

29th November

1. Brief background to SUDI and SIDS

2. Bedsharing and telling people what to do

3. Current Inequalities

4. Qualitative work with families in priority groups

5. Future work - Invitation to be involved

Overview

What is Sudden Unexpected Death in

Infancy?

(SUDI or SUID)

The death of a baby which was not anticipated as a significant possibility 24 hours before the death

or

where there was a similarly unexpected collapse leading to or precipitating the events which led to the death

What is Sudden Infant Death Syndrome?

(SIDS or cot death)

“The sudden death of an infant, which is unexplained after review of the clinical history, examination of the circumstances of death, and

post-mortem examination”

( Stavanger 1994)

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SIDS/unascertained death rates in the UK from 1979 – 2017

2) Confidential Enquiry into Stillbirths & Deaths in Infancy (CESDI) Study 1993-6: 325 SIDS & 1300 controls

➢ Prospective➢ Population-based➢ Age-matched controls➢ Contemporaneous➢ Ref sleep within 24 hours of interview➢ Face to face interviews

3) South West Infant Sleep Scene(SWISS) Study 2003-6: 80 SIDS & 87 controls

1) Avon Infant Mortality Study (AIMS) 1987-9: 72 SIDS & 144 controls

Three English Case-Controls studies

4) Avon Cohort Study 1984-2003 300 SIDS

5) OASIS Retrospective National2016-201660 SIDS & 198 controls

Non-controversial (usually…)

1. Sleep on back in “feet to foot” position in cot

2. Breastfeeding

3. No tobacco smoke exposure (before and after birth)

4. Share a room with parents - day and night first 6 months

5. No heavy wrapping – use blankets or sleeping bags not duvets

6. Don’t co-sleep on sofa

7. No pillows, loose bedding and head covering

Current evidence for SIDS risk reduction

Current Advice for SIDS risk reduction

Not universally accepted

• Avoid (or encourage) swaddling?

• Use a dummy (pacifier)?

• Avoid all bed-sharing?

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Sharing a sofa

Sharing a parental bed

Proportion of co-sleeping SIDS

Year

Source : Avon Longitudinal study

Back to sleep campaign%

Before 1991 : 14%After 1990 : 46%

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Sharing a sofa

Sharing a parental bed

Avon Data : Actual number of co-sleeping SIDS

YearSource : Avon Longitudinal Study

Back to sleep campaignn

Before 1991 : 3-4 a year in bedAfter 1990 : 2 a year in bed

South West Infant Sleep Scene Study

• 2003-2006

• 80 SIDS & 87 Random Controls

• Population 5 million

• 180,000 births

6% 10%0%

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40%

60%

SIDS Controls

Co-sleeping in the SWISS study

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Sleeping on a sofa or involving alcohol or drugs, or parent smokes

Bedsharing and the risk of unexpected infant death

• Smoking alcohol or drugs

• Sofas and armchairs

• Babies born prematurely or of low birthweight

• “Bedsharing with a breastfeeding mother with none of the above risk factors has NOT been shown to be a significant hazard in any study where these data have actually been collected rather than imputed.”

Blair, Sidebotham, Pease and Fleming PLOS ONE 2014;9: e107799.

Moon RY et al. Health Messaging and African-

American Infant Sleep Location: A Randomized Controlled Trial.

J Community Health. 2016 Jul 28.

“African-American mothers who received an enhanced message about

SIDS risk reduction and suffocation prevention were no less likely to

bedshare with their infants.”

“Despite AAP recommendations to avoid bedsharing, public health efforts have been

unsuccessful in changing behaviors.”

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SUDI Deaths by ICD-10 Code, 2000 - 2016 USA

PNM

SUDI

R95

R99

W75

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2004 2005 2006 2007 2008 2009 2010 2011 2012 2013 2014 2015 2016 2017Rat

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sSIDS/unascertained death rates by maternal age 2004 – 2017

Gen pop 20-24 Under 20

Understand First

Study 2To understand the perspectives of both mothers and

health professionals who engage in conversations about safer sleep.

Qualitative Interview Objectives

Professionals Mothers• Gaps in knowledge

• Communication styles

• Influencing families

• Potential areas for improvement

• Gaps in knowledge

• Overcoming barriers to safer sleep

• Improving credibility of advice

• Potential areas for intervention

Study 1To understand the factors influencing decision making

for the sleep environment in families at high risk of SIDS.

Mothers

• The sleep environment

• Night time care

• SIDS risk reduction advice

• Potential areas for intervention

20 mothers with babies at increased risk of SIDS (<25, smoke,

3 children, deprivation score)

10 mothers from the control group of a larger study, 12 health

professionals (HVs and MWs) working in deprived areas of Bristol

“If they could tell you a real definitive reason why them sleeping in on... like in bed with them on you, […] like

this happens, and this, and this, and this, and this causes this, I would probably have a bit of a different

attitude.” (Mother of one, age 24)

Why or how do the messages

protect?

Just this once…

“It’s only like the odd time. Normally I just put him back in his bed after, […] but the odd I’m like oh no, just

go to sleep. But I don’t tend to do it very often just in case."

(Mother of one, age 18)

Hot-Cold Empathy Gap: When people underestimate the influence of visceral factors on their behaviour in certain states

Loewenstein 2005

“The first time I accidentally did it was propped up on cushions feeding him in the dark, playing Candy Crush Saga, I must have just fallen asleep, I hadn’t

planned to do it” (Mother of one, age 19)

Disrupted Routines as a risk factor for unsafe

sleep

“Obviously we want to give you as much information as we can so that can continue when the baby is born sort of thing. And I think we did have the safe sleep leaflets.”

Health Visitor

Increasing Knowledge

“I always try and say safer sleeping because it sounds positive, and I know what we’re ultimately trying to prevent is their death, but it

can be quite shocking to them. So I try and be positive and say safer sleeping and this is how we prevent infant death.”

Health Visitor

Positive Language

“My experience is that a lot of women don’t know what they should be doing by the time we have

visited the next day.”

Community Midwife

Following Up

Parents want to know why they should follow the risk reduction advice

Occasional risks were seen as less risky

Sleep deprivation and disrupted routines can lead to unintentional unsafe sleeping scenarios

Some parents will need support with sleep deprivation and planning for disruption if we are to improve uptake of safe sleep advice

Current concept for the intervention

A package of support for professionals to engage high

risk families in effective conversations about infant

sleep:

• Online

• Animations and user generated content

• Evidence-based

• Realist Evaluation: what works, for whom, under what circumstances?

Thanks and acknowledgements

Families and health professionals

Professor Peter Fleming

Dr Jenny Ingram

Professor Peter Blair