Workshop: Moving Research to Advice

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Workshop Moving Research to Advice

• Fern Hauck, MD, MS
• Carl E. Hunt, MD
• Rachel Moon, MD

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Workshop Objectives

• To identify socio-cultural influences on
  decisions and practices
• To develop strategies for discussing frequently
  asked questions about SIDS

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Scenario 1

• You receive a call from the parents who had a
  baby die from SIDS. They have just had a 2nd
  baby. They are asking for an evaluation to
  determine the risk of SIDS.

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Brainstorming ideas

• What are they concerned about? What are their
  fears?
• Review the autopsy findings and the death scene
  investigation
• What is parents perception of circumstances
  surround death?
• Who told them it was SIDS?
• Did they breastfeed? Review tenets of BTS
  campaign. Begin discussion about safe sleep
  recommendations.
• Can reduce risk, but not prevent.

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• They may want a test for SIDS

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Discussion points

• Arrange for OP visit review information about
  first infant
• Review safe sleeping other risk reduction
  guidelines (BTS, AAP)
• Risk for subsequent SIDS death is approximately
  5x higher
• Review available assessment approaches
• Pneumogram
• Short term home event recordings
• No evidence-based sensitivity/specificity
• Review potential interventions
• Home monitor No evidence of efficacy
• Genetic testing not ready for routine practice
  individualilze depending on history
• Available clinical research opportunities?

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Scenario 2

• You receive a call from the neonatologist who is
  caring for a healthy preterm infant who had a
  birth weight of 1100 grams. The baby is now
  ready for discharge from the NICU.
• What needs to be done, and when, to ensure that
  parents and infant are adjusted to supine and
  safe sleeping before NICU discharge?
• What, if anything, could/should be done to
  evaluate presence or risk for ongoing
  apnea/bradycardia/desaturation events at home?
• Should a home monitor be used?

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Brainstorming ideas

• Nurses should role model Back to Sleep as soon as
  baby stabilized every single time
• Inservice for neonatologists theyre calling
  too late
• Public health referral to assess home setting

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Discussion points

• Transition to supine sleeping in NICU
• Support parents and NICU staff
• Review safe sleeping other risk reduction
  guidelines (BTS, AAP)
• Review AOP history and current Sx, if any
• No evidence that any assessment or intervention
  reduces risk for SIDS
• Discuss cobedding of multiples
• Assure oxygenation in carseats
• Association between events at home and 1-year
  developmental status

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Scenario 3

• A state legislator whose neighbor had a baby die
  from what was initially thought to be SIDS (but
  one sibling was subsequently diagnosed with
  prolonged QT syndrome) would like to propose a
  bill that mandates universal EKG screening for
  all neonates born in the state. He is asking
  your opinion as someone who is an expert in the
  area of SIDS and infant mortality.

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Brainstorming ideas

• Meet legislator lack of efficacy of his
  proposal, but use opportunity to enlist support
  of legislator in addressing SIDS issue in general

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Discussion points

• Long (or short) QT Syndrome may explain 10 or
  more of SUDI
• Italy established ECG screening
• Apparently not continuing
• Problems
• At what age or ages?
• Cost high for universal screening test
• Who will perform and interpret?
• QT may be normal unless perturbed
• Not recommended by AAP

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Scenario 4

• Your organization has provided portable cribs
  (e.g., pack and plays) to women without access to
  a safe crib. You learn that about 10 of the
  recipients are not using them after follow-up
  home visits. What additional information do you
  need? What strategies will you use to increase
  usage?

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Brainstorming ideas

• Additional Information
• Why arent they using it? Cultural?
• Where do they live? Are they transient? Is
  transporting it a problem?
• Home visit may be first step individual
  differences
• Worried about crib death, sold it, worried about
  bedbugs, dont how to put it together dont have
  room for it, inconsistent use if multiple
  caregivers, crib is upstairs and family is
  downstairs, baby cries in crib, mothers lonely
  and want baby close to them, easier to breastfeed
• Concern about pack and play too close to
  ground, mattress too hard

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Strategies

• Reinforce safe sleep techniques in home
• Home visitor needs to be convinced that they can
  be effective and are supportive of the safe sleep
  message
• Use shock value, other peoples personal
  experience when talking about SIDS
• Help mother rearrange bedroom
• Provide bassinet insert in pack n play
• Whom do they listen to for advice? Pull them
  into conversation.
• Validate her self-efficacy in making decisions
  best for child
• Dispel some of the myths

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Discussion points Additional information needed

• Why arent they using them?
• Too much trouble to set up, dont know how to set
  up not enough room, dont want to use it (want
  baby close to them) doesnt seem comfortable for
  baby baby may not sleep well in it
• Perception is this crib or playpen?
• Do parents not see this as sleep place?
• Do parents avoid use because of crib death?
• Perception of SIDS/SUDI risk
• Do parents think that bedsharing is safer than
  using crib/portable crib?
• Are others advising parents not to use cribs?

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Discussion points Strategies to increase usage

• Will depend on parents reasons
• Set-up or room problem can go to home to help
  set up figure out way to make room for crib
• Change perceptions/family opposition enlist
  people from community who are using cribs peer
  support
• Provide more information about SIDS/SUDI and
  bedsharing again enlist peers or respected
  health professionals?

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Scenario 5

• Your patient is a refugee from Somalia and is now
  pregnant with her third child. You are aware that
  it is customary for newborns and infants to sleep
  with their mother for at least one year. How
  would you counsel this expectant mother about
  safe sleep practices, especially in relation to
  bed sharing?

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Brainstorming ideas

• Establish relationship before doing a lot of
  teaching learn about cultural practices find
  which ones you can honor
• Do they know what SIDS is?
• Explain research and the risks so that she can
  understand
• Explain that we know more than we used to know

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Discussion points

• What has she done with other children?
• Ask for details some of the bed sharing
  practices may be safer (husband sleep
  separately, firm surface, no pillows,
  breastfeeding, smoking)
• Ask about plans for this baby same as with
  others?
• Has she heard about SIDS? What does she know?
  Start providing info about this
• Does she have access to crib? Can you help her
  get one?
• If she wants to bedshare, dont insist that she
  doesnt, but continue to educate and be sure
  other recommendations are adhered to.
• Home visit by public health nurse or community
  agency

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Scenario 6

• You are frequently being asked about whether
  swaddling is safe and how to do it effectively.
  What products are available for swaddling, and
  which, if any, do you recommend? What is the
  evidence of swaddling in relation to SIDS?

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Brainstorming ideas

• Give information about how to swaddling
  lightweight blanket
• What is the information about how to swaddle?

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Discussion points

• AAP has not yet weighed in on the benefits and
  risks of swaddling
• Common in many cultures
• Van Sleuwens paper (Pediatrics 2007)
• Benefits arouse less, sleep longer cry less,
  soothes pain improves neuromuscular development
  and self-regulatory abilities in preterm infants
  temperature regulation promotes supine
• Risks Potential hyperthermia, increased risk of
  hip dysplasia swaddling prone can increase
  SIDS risk
• Note Halo sleep sack comes with swaddler
  (optional)

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Scenario 7

• What would we advise a mother whose baby refuses
  a pacifier? Or how might we word recommendations
  that will not suggest that we are trying to
  undermine breastfeeding moms?

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Brainstorming ideas

• Make sure that they use pacifier after feeding so
  baby just wants to suck not in place of feeding
• Often using breast as pacifier idea is having
  baby going to sleep sucking
• Explain how/why pacifier could interfere with
  breastfeeding mom can self-correct

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Discussion points

• Dont force the pacifier!
• Can try a few times but dont worry about it
  too much
• Pacifier is just one way to decrease SIDS risk
  there are others
• Pacifiers recommended at bedtime, so
  breastfeeding moms should continue to feed
  frequently and not use pacifier as replacement
• Pacifiers are protective even among breastfeeding
  babies (Li Kaiser study)