1. © 2008 Ronald G. Barr, MDCM, FRCPC Robert Wood Johnson Foundation Center for Health Policy at UNM FALL 2008 LECTURE SERIES Inter-/Trans-Disciplinary Research on Health: What? How? Why? “Where the Rubber Hits the Road: How Science Can Be Translated into Policy for Prevention of Shaken Baby Syndrome” Ronald Barr, MDCM, FRCP Canada Research Chair in Community Mental Health and Professor of Pediatrics University of British Columbia Co-Sponsors: College of Education; Center for Development and Disability, Health Sciences Center

2. © 2008 Ronald G. Barr, MDCM, FRCPC Note on this slide set This is an abbreviated set of slides from the presentation. A number of slides could not be reproduced because of copyright and distribution rights limitations. This may result in some of the slides seeming to be “discontinuous” from one another. Note that these are copyrighted and for information only, and may not be distributed for any reason.

3. © 2008 Ronald G. Barr, MDCM, FRCPC Where the rubber hits the road: How science can be translated into policy for prevention of Shaken Baby Syndrome RWJ Foundation Center for Health Policy University of New Mexico November 13, 2008 Ronald G. Barr, MA, MDCM, FRCPC Director, Centre for Community Child Health Research, CFRI Canada Research Chair in Community Child Health Research Vancouver, BC, Canada

4. © 2008 Ronald G. Barr, MDCM, FRCPC Disciplines/Methodologies Necessary for SBS Prevention Program Pediatrics Primary Care Practice Epidemiology Clinical Research Design Child Developmental Psychology Statistics Gastroenterology Nursing Neuroradiology Neuroscience Anthropology, Cultural and Biological Nonlinear Dynamic Systems Theory Developmental Psychobiology Child Abuse Injury Prevention Community-based Prevention

5. © 2008 Ronald G. Barr, MDCM, FRCPC The Science: Four Lines of Evidence Shaking Your Baby Is Dangerous Crying And Colic Is Normal The most common stimulus Prevention ?

6. © 2008 Ronald G. Barr, MDCM, FRCPC The Shaking Weak Neck Muscles Normal Large Head to Body ratio Violent, sustained shaking Guthkelch (1971) demonstrated the dangers demonstrated the dangers of shaking of shaking

7. © 2008 Ronald G. Barr, MDCM, FRCPC Intracranial “Cascade” from Shaking

8. © 2008 Ronald G. Barr, MDCM, FRCPC Mechanical Stresses During Shaking & Eye Lesions

9. © 2008 Ronald G. Barr, MDCM, FRCPC Traumatic Retinoschisis

10. © 2008 Ronald G. Barr, MDCM, FRCPC Outcomes of Hospitalized Cases 20-35% die Of the survivors, 65-80% have significant longterm neurological and developmental abnormalities 40% of survivors are blind

11. © 2008 Ronald G. Barr, MDCM, FRCPC Challenges: Determining occurrence Cases that never come to clinical attention? “Missed” cases (~30% [Jenny et al 1999] and “repetitive” cases (~30-70% [many authors]) imply that some children are shaken and never come to clinical attention The Gabbi and Michele story

12. © 2008 Ronald G. Barr, MDCM, FRCPC Why crying in normal infants might be relevant to Shaken Baby Syndrome?

13. © 2008 Ronald G. Barr, MDCM, FRCPC Four Lines of Evidence Shaking Your Baby Is Dangerous Crying And Colic Is Normal

14. © 2008 Ronald G. Barr, MDCM, FRCPC Different Lines of Evidence: The Normalcy of Crying

15. © 2008 Ronald G. Barr, MDCM, FRCPC What is colic? Defining features (Gormally & Barr, 1997) 1.Age-dependent crying patterns (peak during 2nd month). 2. Associated behaviors (prolonged cry bouts, unsoothability, “pain facies”) 3. “Paroxysmal” (unpredictable)

16. © 2008 Ronald G. Barr, MDCM, FRCPC Wessel’s “Rule of 3’s” An infant has colic when s/he cries: > 3 hours/day > 3 days/week > 3 weeks Wessel et al, “Paroxysmal fussing in infancy, sometimes called ‘colic.’” Pediatrics, 1954

17. © 2008 Ronald G. Barr, MDCM, FRCPC Typical Assumption: Colic is an abnormality, or “something wrong” with the infant Typical Assumption: Colic is an abnormality, or “something wrong” with the infant

18. © 2008 Ronald G. Barr, MDCM, FRCPC Current Evidence-based Assumption: Colic and early increased crying are normal, and there is nothing wrong with the infant

19. © 2008 Ronald G. Barr, MDCM, FRCPC What is colic? Defining features (Gormally & Barr, 1997) 1.Age-dependent crying patterns (peak during 2nd month). 2. Associated behaviors (prolonged cry bouts, unsoothability, “pain facies”) 3. “Paroxysmal” (unpredictable)

20. © 2008 Ronald G. Barr, MDCM, FRCPC The “crying curve” (Brazelton, 1962) Large differences from infant to infant

21. © 2008 Ronald G. Barr, MDCM, FRCPC “Peak Pattern” of Early Crying Behavior Hunziker & Barr, Pediatrics 1986

22. © 2008 Ronald G. Barr, MDCM, FRCPC Caregiving Contexts

23. © 2008 Ronald G. Barr, MDCM, FRCPC Hourly Cry/Fret Duration in !Kung San Infants Hourly Cry/Fret Duration in !Kung San Infants Barr, Konner et al DMCN 1991 Large differences from infant to infant

24. © 2008 Ronald G. Barr, MDCM, FRCPC “Distress Curves” have been found in all non-human mammalian (i.e. breast feeding) species investigated. Guinea pig pups (Pettyjohn, 1979) Infant rat pups (Hofer et al, 1999) Chimpanzees (Bard, 2000) Free-living Rhesus macaques (Barr et al, 2005)

25. © 2008 Ronald G. Barr, MDCM, FRCPC Reasons for the Frustrating Properties of Colic and Early Crying 1.The crying curve 2.The unsoothable crying bouts

26. © 2008 Ronald G. Barr, MDCM, FRCPC Unsoothable bouts are unsoothable!

27. © 2008 Ronald G. Barr, MDCM, FRCPC Unsoothable Crying Bouts in London, Copenhagen, and with a “proximal” form of care

28. © 2008 Ronald G. Barr, MDCM, FRCPC The Period of PURPLE Crying is a registered trademark and all content is copyright protected. All rights reserved, Ronald G. Barr, MDCM and the National Center on Shaken Baby Syndrome (2004-2008) In Summary “Colic” is a manifestation of normal behavioral development “Colic” is the upper end of a continuum of crying behavior in normal infants (like height: some infants are taller and some are shorter) “Colic” is not an indication of disease in the infant.

29. © 2008 Ronald G. Barr, MDCM, FRCPC Clinical Implications 12345 Wessel’s criteria “False positive” effective “False negative” ineffective

30. © 2008 Ronald G. Barr, MDCM, FRCPC Clinical Implications If you do not take the curve into account, therapeutic interventions can be misinterpreted as effective when the are not effective, or ineffective when they are effective ALL infants experience the curve, and “organic causes” only move the infant “up” within the range of crying

31. © 2008 Ronald G. Barr, MDCM, FRCPC Why normal infant crying is a “window of opportunity” to prevent SBS

32. © 2008 Ronald G. Barr, MDCM, FRCPC “John’s story” illustrates… Age of baby, 7 weeks Accumulated frustration over time Wouldn’t stop crying as immediate stimulus Took out his “anger and frustration” “…and he stopped crying” – the positive feedback cycle Confession of shaking No associated physical contact or trauma

33. © 2008 Ronald G. Barr, MDCM, FRCPC Questionnaire Study of Soothing Methods in Holland van der Wal et al, Arch Dis Child, 1998 Techniques used to soothe infants: 1.Smother2% 2.Slap3% 3.Shake5%

34. © 2008 Ronald G. Barr, MDCM, FRCPC Runyan. The challenges of assessing the incidence of inflicted traumatic brain injury: A world perspective. Runyan. The challenges of assessing the incidence of inflicted traumatic brain injury: A world perspective. Amer J Prev Med 2008;34 (4S) “The impact of these private acts must be further studied as there may be other long- lasting and serious intracranial impacts that have not been characterized.”

35. © 2008 Ronald G. Barr, MDCM, FRCPC Crying as a Stimulus for Shaken Baby Syndrome Danger of shaking an infant Normalcy of Increased Inconsolable Crying Crying as a stimulus to shaking Early crying is the most common stimulus for Shaken Baby Syndrome

36. © 2008 Ronald G. Barr, MDCM, FRCPC The “crying curve” (Brazelton, Pediatrics, 1962) Hypothesis: Hypothesis: IF crying was a significant stimulus for sbs, THEN the pattern of age- related incidence of sbs should be similar to the age-related properties of the crying curve

37. © 2008 Ronald G. Barr, MDCM, FRCPC Age-specific incidence of hospitalized cases of SBS (Barr, Trent et al Child Abuse & Neglect 2006)

38. © 2008 Ronald G. Barr, MDCM, FRCPC Age-specific Incidence of Publicly-reported Cases of SBS (Lee, Barr et al JDBP 2007)

39. © 2008 Ronald G. Barr, MDCM, FRCPC Curves of Early Crying and SBS Incidence 12345 Months of Age Lag Onset Cry Curve SBS Curve

40. © 2008 Ronald G. Barr, MDCM, FRCPC Prevention: The Period of PURPLE Crying Dangers of Shaking Normalcy of Early Crying Crying as Stimulus to SBS Prevention ?

41. © 2008 Ronald G. Barr, MDCM, FRCPC Normal Crying as a “window of opportunity” to prevent SBS normality of early increased cryingAn opportunity to teach caregivers and all members of society about the normality of early increased crying; only negative clinical consequenceAn opportunity to see SBS as the only negative clinical consequence for infants of early increased crying; whenTells us when the teaching must occur to be effective.

42. © 2008 Ronald G. Barr, MDCM, FRCPC The Period of PURPLE Crying The Period of PURPLE Crying Dangers of Shaking Normalcy of Early Crying Crying as Stimulus to SBS Prevention: Period of PURPLE Crying

43. © 2008 Ronald G. Barr, MDCM, FRCPC The properties of early crying are extremely frustrating to caregivers

44. © 2008 Ronald G. Barr, MDCM, FRCPC The Period of PURPLE Crying P Peak of Crying U Unexpected R Resists Soothing P Pain-like Face L Long Lasting E Evening

45. © 2008 Ronald G. Barr, MDCM, FRCPC Pathways to Shaking Pathways to Shaking Crying Threshold Frustration ……….Anger Shaking

46. © 2008 Ronald G. Barr, MDCM, FRCPC The Pathways to Prevention: Appropriateness of Advice Crying Threshold Frustration ……….Anger Shaking Appropriate Accurate Advice

47. © 2008 Ronald G. Barr, MDCM, FRCPC The Importance of Appropriate Information, Reassurance and Advice

48. © 2008 Ronald G. Barr, MDCM, FRCPC “If you were a good mother, you would…” Listen carefully to the cry and learn to read what the cause of the crying is so that you address the needs of your baby…Listen carefully to the cry and learn to read what the cause of the crying is so that you address the needs of your baby…

49. © 2008 Ronald G. Barr, MDCM, FRCPC “If you were a good mother, you would…” Listen carefully to the cry and learn to read what the cause of the crying is so that you address the needs of your baby… Learn the right way to soothe your infant so that s/he can be calmed and not cry…Learn the right way to soothe your infant so that s/he can be calmed and not cry…

50. © 2008 Ronald G. Barr, MDCM, FRCPC “…calming your baby the right way” as a prevention Fussing and crying may be reduced in response to care giving practice, but there is no evidence that unsoothable crying bouts are.

51. © 2008 Ronald G. Barr, MDCM, FRCPC Tummi Time “Proven Remedy for Colic”

52. © 2008 Ronald G. Barr, MDCM, FRCPC Different Starting Assumptions Period of PURPLE Crying: some not Period of PURPLE Crying: In the first three to five months of life, there is a normal period of increased crying, some of which is inconsolable crying that is not amenable to changes in care giving techniques “…calm your baby the right way”: “…calm your baby the right way”: There are ways that will always calm your baby if only you do them the right way (and there is no such thing as inconsolable crying)

53. © 2008 Ronald G. Barr, MDCM, FRCPC The Pathways to Shaking: Wrong Advice? Crying Threshold Frustration ……….Anger Shaking Inaccurate Inappropriate Wrong Advice Must not result in more harm than goodMust not result in more harm than good

54. © 2008 Ronald G. Barr, MDCM, FRCPC Period of PURPLE Crying Program: Achieving “Universal coverage” attractiveEducational, and attractive to parents of newborns on the first day of life positiveClear, memorable, salient, meaningful, positive message Grade 3 level language Multicultural Valuable for all parents Acceptable to Public Health Nurses no bottles, blankets, bumpers, etc.) Economical Each parent receives a copy share with othersEach parent receives a copy to review and to share with others

55. © 2008 Ronald G. Barr, MDCM, FRCPC Do education programs change knowledge and behavior?

56. © 2008 Ronald G. Barr, MDCM, FRCPC The “Parents Helping Infants” Studies Randomized controlled trials in community settings in Vancouver and Seattle Delivery systems: Public health nurse home visitors Pediatric Offices Prenatal Classes On Maternity Wards

57. © 2008 Ronald G. Barr, MDCM, FRCPC Testing the hypothesis that education materials can change knowledge and behavior R Infant safety intervention Period of PURPLE Crying Intervention

58. © 2008 Ronald G. Barr, MDCM, FRCPC Testing the hypothesis that education materials can change knowledge and behavior Birth Home visit Intervention at ~2 weeks 4-day diary at 5 weeks of age Knowledge and Behavior Questionnaire at 2 months

59. © 2008 Ronald G. Barr, MDCM, FRCPC Implementation Hypothesis To make a long term sustained reduction in the number of cases of shaken baby syndrome, there will need to be a cultural change in the way society understands (1) the meaning of increased crying in early infancy, and (2) the danger of shaking as a response to the frustration with that crying.

60. © 2008 Ronald G. Barr, MDCM, FRCPC Preventing abusive head trauma among infants and young children: A hospital-based, parent education program. Dias et al Pediatrics 2005: 115, 470-477 Hospital-based parent education program Intervention: Nurse provision of AAP leaflet, video (Portrait of Promise), commitment statement, posters on wards Follow-up telephone interviews at 7 months

61. © 2008 Ronald G. Barr, MDCM, FRCPC Dias model Process Content Process elements (7): Teachable moment Nurse delivery PURPLE and the Dias model

62. © 2008 Ronald G. Barr, MDCM, FRCPC Dias model Process Period of PURPLE Crying Materials Process elements (7): Teachable moment Nurse delivery PURPLE Program Materials with the Dias Model Dose 1 benefits from and builds on the Dias process

63. © 2008 Ronald G. Barr, MDCM, FRCPC The Period of PURPLE Crying is a registered trademark and all content is copyright protected. All rights reserved, Ronald G. Barr, MDCM and the National Center on Shaken Baby Syndrome (2004-2008) “Three Dose” Program Dose 1: Maternity units Dose 2: Public Health, Family Physicians, Nurse Practitioners Dose 3: Public Education Campaign Reinforcement and Enhancements: Emergency personnel, pediatrics, physicians, social work, community programs and all health professionals who work with parents of infants

64. © 2008 Ronald G. Barr, MDCM, FRCPC What do we know about Shaken Baby Syndrome? SBS has already been shown to: most severebe the most severe form of child abuse, preventablebe a preventable form of child abuse (25- 47% reduction), clear stimulusrisk behaviorhave a clear stimulus (crying) and risk behavior (shaking) leading to the abuse; demonstrated efficacyhave educational materials with demonstrated efficacy in changing relevant knowledge and behavior (Period of PURPLE Crying).

65. © 2008 Ronald G. Barr, MDCM, FRCPC