Healthy Native Babies Project Workbook and Toolkit Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) NATIONAL INSTITUTES OF HEALTH U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES Healthy Native Babies Project Workgroup Developed with the Native American Management Services under contract 3HHSN275200503412C June 2010 The information and materials created for the Healthy Native Babies Project were crafted with care and revised with the feedback of American Indian/Alaska Native (AI/AN) community members, who used the messages at numerous trainings held in U.S. Northern Tier communities. Just as one size fits all does not really apply to clothing, it does not apply to every AI/AN community that will use the Healthy Native Babies Project materials. While it is important to be consistent about the basic overall safe sleep messages, we encourage you to highlight those that best address and tailor those to best address the issues of greatest concern for your community. It is our sincere hope that your success will lead to a reduction in the disparate number of AI/AN babies dying of Sudden Unexpected Infant Death (SUID)/Sudden Infant Death Syndrome (SIDS). Healthy Native Babies Project Workgroup In memory of Carole Anne Heart Contents Chapter 1: Facts About Sudden Infant Death Syndrome (SIDS) 1 What is SIDS? 2 How many infants die of SIDS? 2 What causes SIDS? 6 What factors increase the risk for SIDS? 8 Chapter 2: Reducing the Risk 0f SIDS 15 Lowering the Risk of SIDS 16 Back Sleep Position 17 Sleep Surface and Sleep Environment 19 Sleep Location 21 Other Ways to Improve Infant Health and Possibly Reduce SIDS Risk 22 Make Time for Tummy Time! 26 Chapter 3: Strategies for Reaching Communities— Know Your Audiences 27 The Importance of SIDS Education 28 Who are the primary audiences? 28 A Critical Primary Audience: Child Care Providers 32 Who are the secondary audiences? 33 Critical Steps to Building a Positive Relationship Between Provider and Patient/Client 35 Outreach to Hard-to-Reach and Underserved Populations 38 Chapter 4: Strategies for Reaching Communities— Action Steps to Reduce the Risk of SIDS 45 SIDS Impacts the Entire Community 46 Health Education Approaches 47 The SOCO (Single Overriding Communications Objective) 51 Grassroots Organizing and Community Outreach 52 Social Marketing 54 Forging Partnerships 55 Sample Outreach Activities 59 Chapter 5: Planning and Sustaining a Healthy Native Babies Project 61 A True Community Effort 62 Develop the Program Proposal or Plan 62 Sustainability Through Community-Based Program Development 62 Funding Applications 65 Implementation: Putting the Plan into Action 66 Evaluation 67 Acknowledgements 71 History of the Healthy Native Babies Project 74 Appendix 1: Abbreviations and Acronyms 78 Appendix 2: Ways to Reduce the Risk of SIDS 79 Appendix 3: Public Health Education Approaches— Selected Theories and Models 81 Appendix 4: Working with the Media and the Single Overriding Communications Objective (SOCO) 86 Appendix 5: Information Sources 91 Chapter 1: Facts About Sudden Infant Death Syndrome (SIDS) Objectives By the end of this chapter the learner will be able to: • Define SIDS. • Explain how many infants die of SIDS and recognize the disproportionately higher SIDS rates among American Indian/Alaska Native (AI/AN) infants. • Describe what is currently known about SIDS causes and risk factors, especially risk factors common in AI/AN communi­ ties. Chapter One What is SIDS? 2 SIDS is the term used to describe the unexpected death of an infant younger than one year of age that remains unexplained after a thorough investigation. Each year in the United States, more than 4,500 infants die suddenly from no obvious cause. These deaths, called Sudden Unexpected Infant Death (SUID), occur suddenly and unexpectedly and the cause of death is not immediately obvious before an investigation. Visit Appendix 1 for a list of The SUID category includes both explained infant deaths, such as poisoning or car accident, abbreviations and and unexplained infant deaths. SIDS is listed as the cause of one-half of all deaths in the acronyms and SUID category. SIDS is also the leading cause of all deaths among infants between one their explanations. month and one year of age. A diagnosis of SIDS is made by collecting information, conducting scientific or forensic tests, and talking with parents, other caregivers, and health care providers. If, after this process is complete, there is still no identifiable cause of death, the infant’s death might be labeled as SIDS. SIDS is defined as: The sudden death of an infant younger than one year of age that remains unexplained after a thorough case investigation, including performance of a complete autopsy, examination of the death scene, and review of the clinical history.1 The exact cause or causes of SIDS are not known. Based on scientific research, researchers now believe that babies who die of SIDS may be born especially vulnerable to both internal influences, such as brain abnormalities, and external influences, such as exposure to tobacco smoke in the environment. Even though there is no certain way to prevent SIDS or to predict which infants may die of SIDS, there are ways to reduce an infant’s risk for SIDS; these risk-reduction strategies are explained in the Chapter 2 of this Workbook. How many infants die of SIDS? The most current data from the Centers for Disease Control and Prevention (CDC) show that 2,323 infants died of SIDS in the United States in 2006. Although the overall SIDS rate in the United States has been steadily declining since the early 1990s, SIDS 1Willinger, M., James, L.S., & Catz, C. (1991). Defining sudden infant death syndrome (SIDS): Deliberation of an expert panel convened by the National Institute of Child Health and Human Development (NICHD). Pediatric Pathology, 11(5), 677-684. rates remain high among certain groups, including American Indians/Alaska Natives (AI/ANs). Efforts to SIDS is: further reduce SIDS need to continue, especially within • groups at higher risk. The leading cause of death for infants between one month and one year of age, An Important Decline with most deaths occurring between two months and four months of age (90 percent Between 1983 and 1992, the average number of of SIDS deaths occur by six months of age SIDS deaths reported in the United States ranged from 5,000 to 6,000 each year. In 1992, the American • Least common during an infant s first Academy of Pediatrics (AAP) Task Force on Infant Sleep postnatal month, between one day and Position and SIDS (now called the AAP Task Force on 28 days after birth SIDS, and called the AAP Task Force in this Workbook) • A sudden and silent medical disorder that can recommended that all healthy babies younger than one happen to an infant who seems to be healthy year of age be placed to sleep on their backs or sides to reduce the risk of SIDS. This recommendation came • A death often associated with the sleep after many international research studies reported that period and with little or no signs of suffering infants who slept on their stomachs had a significantly • Determined only after an autopsy, higher risk of dying from SIDS than those who slept on examination of the death scene, and a review their sides or backs. of the infant s and family s clinical histories • In 1994, the Eunice Kennedy Shriver National Institute A "diagnosis of exclusion," meaning the of Child Health and Human Development (NICHD) cause of death is labeled as SIDS only after and a number of partners, including the AAP, the ruling out other causes Maternal and Child Health Bureau of the Health • Slightly more common among male Resources and Services Administration, the SIDS infants and slightly more common during Alliance (now called First Candle/SIDS Alliance), the winter months and the Association of SIDS and Infant Mortality • A death which leaves unanswered questions Programs, launched the Back to Sleep campaign to and causes intense grief for parents, families, raise awareness among parents and caregivers about and communities ways to reduce the risk of SIDS. The campaign’s top recommendation for reducing the risk of SIDS was to place healthy infants on their backs to sleep. SIDS is not: In 1996, after more data were gathered about the • Entirely preventable, but the risk can be re­ dangers posed to infants who slept on their stomachs, duced the AAP Task Force recommended that all healthy • The same as suffocation babies be placed to sleep wholly on their backs, the • Caused by vomiting and/or choking position associated with the lowest SIDS risk. The AAP Task Force concluded that: • Caused by diphtheria, pertussis, and tetanus (DPT) vaccine, or by other immunizations, Stomach sleeping poses the highest risk of SIDS; > shots, or vaccinations > Side-lying position falls in between stomach and • Contagious or catchable back sleeping in terms of risk; and • The result of child abuse or neglect “Back is best” for reducing a baby’s risk of SIDS. > • Caused directly by cribs • The cause of every unexpected infant death Chapter One Figure 1. U.S. SIDS Rate and Sleep Position, 1988 2006 100 4 1.5 1.4 1.39 1.3 1.3 75.7 72.8 72.2 1.2 71.6 71.1 70.1 1.17 66.6 64.4 1.03 55.7 53.1 e 1 .87 .74 .77 50 .72 .67 DS Rat .62 .56 .57 .56 SI .55 38.6 .53 .54 26.9 35.3 (Per 1,000 Live Births) Live Births) 1,000 (Per 0.5 17 13 Percentage Back Sleeping 0.0 0 1988 1989 1990 1991 1992 1993 1994 1995 1996 1997 1998 1999 2000 2001 2002 2003 2004 2005 2006 Pre-AAP Recommendation Post-AAP Recommendation Back to Sleep Campaign Sources: SIDS rate source: National Center for Health Statistics, Centers for Disease Control and Prevention, Department of Health and Human Services.27, 29 Sleep position data: Eunice Kennedy Shriver National Institute of Child Health and Human Development, National Infant Sleep Position Study.30, 31 Data from 2004 indicate that the overall U.S.