Literature Review Summary, Healthy Native Babies Project

Literature Review Summary

Healthy Native Babies Project

January 2021

Healthy Native Babies Project Literature Review

January 15, 2021 1

Introduction

This report is intended to support the evaluation and redesign of the Healthy Native Babies Project

(HNBP). It includes a brief outline of the burden of Sudden Unexpected Infant Deaths (SUID), including

Sudden Infant Death Syndrome (SIDS); associated risk and protective factors among the American Indian

and Alaska Native (AI/AN) population; and an overview of the promising practices that have been

implemented by and with AI/AN people.

The HNBP w

as created to develop culturally appropriate SIDS risk reduction messages for AI/AN

families, and to provide local support and training to health care providers and community health and

outreach workers. The Eunice Kennedy Shriver National Institute of Child Health and Human

Development (NICHD), part of the National Institutes of Health, met with AI/AN and federal partners in

2002 to address the high rates of SIDS in AI/AN communities, in response to the Aberdeen Area Infant

Mortality Study.

A work group formed to create an outreach initiative focused in the Northern Tier of the

United States, which includes five Indian Health Service (IHS) Areas based in: Aberdeen, South Dakota;

Anchorage, Alaska; Bemidji, Minnesota; Billings, Montana; and Portland, Oregon, where AI/AN SIDS

rates were the highest. Members of this work group, and others, have continued the work, evolving the

activities to meet current needs.

Methods

This report builds on previous literature searches by the HNBP, including studies on SIDS and SUID

published between 2015 and January 2020.

As studies reporting AI/AN data are limited, publications

outside of this date range were also included when more recent studies were not available. Multiple

iterations of the primary search terms were used via PubMed MeSH (Medical Subject Headings), and

within select Sudden Infant Death MeSH subheadings. For example, the search for literature on overall

SUID and SIDS among AI/ANs combined either "sudden infant death," "SIDS," "Sudden Infant Death

Syndrome," "Death, Sudden Infant," "Sudden Infant Death/epidemiology," "Sudden Infant

Death/mortality," and "Sudden Infant Death/prevention and control," with "North American Indian,"

"American Indian," "Alaska Native," "inuits," "eskimo,” "inuk,” or "Native American." Other information

included is from grey literature searches, and other relevant unpublished materials obtained by the HNBP.

Rates of SUID and SIDS

SUIDs are

infant deaths before one year of age that occur suddenly and unexpectedly, the cause of which

is not immediately known before investigation, and include SIDS, accidental suffocation in a sleeping

environment, and other deaths from unknown causes.

SIDS is the sudden death of an infant younger than

one year of age that cannot be explained even after a full investigation that includes a complete autopsy,

an examination of the death scene, and a review of the clinical history.

In 1994, the NI

CHD in collaboration with other organizations launched Back to Sleep (renamed Safe to

Sleep

in 2012), a public education campaign that promotes the American Academy of Pediatrics (AAP)

safe infant sleep guidelines, including placing babies on their back to sleep. Since the initial launch, the

overall SIDS rate in the U.S. has declined by more than 50%.

However, between 1995 and 2013, there

was no significant change in non-Hispanic single race AI/AN SUID rates. During this period, SUID rates

were consistently highest within the AI/AN population compared to other racial/ethnic groups in the U.S.

These disparities remain regardless of socioeconomic status, maternal age, birth weight, and prenatal care.

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In 2017, the rate of SIDS among AI/AN infants (77 per 100,000 births) was more than double that of

White infants (35 per 100,000).

There is substantial regional variation in SIDS rates across the U.S. An examination of SIDS rates among

the AI/AN population in states grouped by approximate IHS Areas during 2008-2017 shows the highest

rates in the Alaska and Great Plains regions, followed by Portland, Billings, Bemidji and Oklahoma

Areas

(See Table 1).

From 2006-2010, the infant mortality rate due to SIDS was significantly higher for

AI/AN babies than for White babies in counties served by urban Indian health organizations nationwide

(113 compared to 38 per 100,000 births).

9,10

Table 1: SIDS Rates Among AI/AN and White Infants, by Approximate Indian Health Service

Areas, 2008-2017.

IHS Area

States

AI/AN

White

Rate per

100,000 Births

HNBP Areas

Alaska

177

Bemidji

Michigan, Minnesota, and Wisconsin

114

Billings

Montana and Wyoming

116

Great Plains

Iowa, Nebraska, North Dakota, and South Dakota

177

Portland

Idaho, Oregon, and Washington

149

Other IHS Areas

Albuquerque/Navajo/Tucson

Arizona, Colorado, Nevada, New Mexico, and Utah

California

Nashville

Alabama, Arkansas, Connecticut, Delaware,

Florida, Georgia, Illinois, Indiana, Kentucky,

Louisiana, Maine, Maryland, Massachusetts,

Mississippi, Missouri, New Hampshire, New Jersey,

New York, North Carolina, Ohio, Pennsylvania,

Rhode Island, South Carolina, Tennessee, Texas,

Vermont, Virginia, and West Virginia

Oklahoma

Kansas and Oklahoma

114

Phoenix

Arizona, Nevada, and Utah

SIDS: Sudden Infant Death Syndrome; IHS: Indian Health Service; AI/AN: American Indian/Alaska Native

Notes: ICD-10 Code: R95 (Sudden infant death syndrome - SIDS); Mother's Bridged Race: American Indian or Alaska Native

and White

; *Due to small numbers in select states, data were not available for these IHS Areas alone, therefore these were

grouped as listed.

Data Limitations

Racial misclassification of AI/AN people in medical and vital records is a common barrier in

epidemiologic studies on the population.

Racial misclassification consistently results in AI/AN people

being classified as another race/ethnicity and underestimates the disease-related morbidity and

mortality.

One study reported an estimated one-third of AI/AN children are not identified correctly as

AI/AN in death records.

These limitations should be considered when reviewing rates of infant

mortality for the AI/AN population.

Literature Review

January 15, 2021 3

Healthy Native Babies Project

Biological Vulnerabilities for SIDS/SUID

The causes of many SUIDs may be discovered after an investigation. While the exact cause or causes of

SIDS are not known, research has shown that babies who die of SIDS are born with one or more, often

undetectable, abnormal biological or medical conditions, which may lead to unexpected responses to

common stressors that occur during a baby’s early life.

Specifically, recent research has shown the

potential impact of infants’ brain and genetic abnormalities, prematurity, and the influences of gender and

the critical infant growth period on SIDS risk. These are each outlined briefly in this section, including

data on the AI/AN population where available.

Brain and Genetic Abnormalities

The development and function of an infant’s brain and nervous system play a role in SIDS risk.

The

Aberdeen Area Infant Mortality Study, conducted among families from 10 Northern Plains Indian

communities, suggested an intrinsic brainstem defect in SIDS cases in American Indians, and linked a

specific brainstem neurochemical abnormality to prenatal exposure to maternal cigarette smoke.

Researchers also believe that genes may predispose infants to SIDS risk and act in combination with

environmental risk factors that could result in SIDS.

Prematurity

Being born prematurely has been shown to be a risk factor for SIDS. This is in part because preterm

infants are not as able to regulate their breathing, heart rate, blood pressure, and body temperature as full-

term infants.

19,20

Despite recent declines in overall rates, U.S. preterm births remain persistently high.

Approximately 10 per 1,000 live births are preterm, representing a large population of infants who are at

increased vulnerability for SIDS. For AI/AN infants, the rate of preterm births is even higher at 11 per

1,000 live births.

In an examination of mortality rates among infants born late preterm or early term between 2003–2005,

rates of SIDS did not differ between non-Hispanic White and AI/AN babies.

In a study of SUID

between 1995 and 2013, the AI/AN population had the highest SUID rates among preterm infants

compared to all other races/ethnicities.

Gender

Male infants account for over 60% of all SIDS cases, placing them at slightly higher risk than females.

The exact cause of the SIDS-gender association is unclear, however male infants appear to be more

vulnerable than female infants to respiratory distress; and male infants may be more likely than female

infants to have a gene that predisposes them to a condition causing a lack of oxygen to the brain.

Infant Age

The majority of babies who die of SIDS are in a ‘critical growth period.’ Before a baby reaches 6 months

of age, there are periods of rapid growth and development that can cause an infant’s system to be

unstable. This may be why babies between one and four months are at highest risk of SIDS, and the

majority (90%) of SIDS deaths occur before a baby reaches six months of age.

However, SIDS deaths

can occur anytime during a baby's first year.

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Triple-Risk Model

According to the Triple-Risk Model, SIDS is more likely in vulnerable infants with a preexisting

abnormality.

29,30

The model states that SIDS may occur when three elements come together

simultaneously:

1) The infant has an unknown or undetected

biological or genetic problem that causes

vulnerability;

2) The infant is affected by a critical growth

period in its first year, which makes its body

systems unstable for a limited time; and

3) The infant is exposed to one or more

environmental stressors that it cannot

overcome, because of the first two factors.

In short, an i

nfant who is vulnerable and whose body

systems are unstable, because of a critical growth

period, may not be able to overcome environmental

stressors. In further exploration of the persistent

racial/ethnic disparities in SUID and SIDS, researchers

may consider the possibility of an interplay between

biological vulnerabilities related to factors such as

metabolic or genetic abnormalities and environmental

risk factors.

Known environmental factors are

outlined in the next section.

Environmental Factors

In an effort to reduce the risk of infant sleep-related

deaths, the AAP identifies factors in the infant sleep

environment—the third component in the Triple-Risk

Model and the only modifiable factor—in “SIDS and

Other Sleep-Related Infant Deaths: Updated 2016

Recommendations for a Safe Infant Sleeping

Environment” (See Sidebar).

AAP R

ecommendations for a Safe

Infant Sleeping Environment

•

Back to sleep for every sleep.

•

Use a firm sleep surface.

•

Breastfeeding is recommended.

•

Room-sharing with the infant on a separate sleep

surface is recommended.

•

Keep soft objects and loose bedding away from the

infant’s sleep area.

•

Consider offering a pacifier at naptime and bedtime.

•

Avoid smoke

exposure during pregnancy and after birth.

•

Avoid alcohol and illicit drug use during pregnancy and

after birth.

•

Avoid overheating.

•

Pregnant women should seek and obtain regular

prenatal care.

•

Infants should be immunized in accordance with AAP

and CDC recommendations.

•

Do not use home cardiorespiratory monitors as a

strategy to reduce the risk of SIDS.

•

Health care providers, staff in newborn nurseries and

NICUs, and childcare providers should endorse and

model the SIDS risk reduction recommendations from

birth.

•

Media and manufacturers should follow safe sleep

guidelines in their messaging and advertising.

•

Continue the “Safe to Sleep” campaign, focusing on

ways to reduce the risk of all sleep-related infant

deaths, including SIDS, suffocation, and other

unintentional deaths.

•

Pediatricians and other primary care providers should

actively participate in this campaign.

This section

briefly outlines selected SUID and SIDS

environmental factors, including data on AI/AN

communities where available, in order to highlight

factors that could have important implications for SIDS

risk reduction policies and practices for the AI/AN

population. While race has been repeatedly identified in

research studies as a risk factor for SIDS, race is a

social category, not a biological factor.

Rather, racial

disparities in SIDS and other sleep-related causes of

infant death can be understood as related to a wide

range of social inequities stemming from a history of

systemic racism that continues to perpetuate

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January 15, 2021 5

intergenerational trauma.

34,35,36,37

Social inequities directly contribute to negative birth outcomes,

including lower birth weight and preterm birth, which, in turn, influence the physiological risks of SUID

and SIDS as previously described. Factors linked to these social inequities, such as maternal smoking,

absent or limited breastfeeding duration, and lack of prenatal care or quality prenatal care, also influence

racial disparities in SUID and SIDS.

It is critical to consider the social and cultural context across

generations and within individual lifetimes when examining the underlying causes of racial disparities in

birth outcomes.

39,40,41,42

This section outlines relevant social and cultural context for SIDS among the

AI/AN population within public health literature, in addition to the environmental factors addressed in the

AAP recommendations.

Infant Sleep Environment

Individual-level factors specific to an infant’s sleep environment shown to increase the risk for SUID and

SIDS may be more common in AI/AN communities and put AI/AN infants at even higher risk.

43,44,45

These risk factors include bed sharing and use of soft sleep surfaces, and soft objects and loose bedding in

the infant’s sleep area.

Related risk factors specific to SIDS include stomach or side sleeping during

naps and at night, and overheating.

Research suggests that among certain populations, including AI/ANs, where and with whom babies sleep

is a matter of long-held values, beliefs, and cultural practices.

Among many AI/AN communities it has

been a common practice and a historical norm for infants to sleep in the same room as their parents or to

bed share. The reasons why a mother or other infant caregiver may choose to sleep with the infant, despite

the recommendation against it, include the following:

• Cultural norm—it is a traditional practice.

• Personal choice—it is the right choice for the family.

• Convenience for feeding—it may be easier for breastfeeding.

• Bonding—it may provide a more ‘connected’ feeling.

• Safety—to monitor the baby for SIDS risks or dangers like vermin, kidnapping, or stray gunfire.

• Specific situation—there may be an inability to be at home for naps or night-time sleep.

• Economic necessity—there may be limited resources to buy a crib, or makeshift sleeping

locations may be used when living in an overcrowded living arrangement.

In focus g

roups including AI mothers and other caregivers from two reservations in Michigan, decisions

about infant sleep location and position were focused on perceptions of what would make their infant

most comfortable (such as sleeping longer) and safe, and what would be easiest for the parents.

While

parents were aware of safe sleep recommendations, they lacked awareness of the underlying rationale.

Parents were receptive to safe sleep education from providers; and they also shared frustration that health

care providers did not explain the rationale behind safe sleep messages and did not address individual

concerns, such as infant choking or infant comfort. These findings suggest that education about safe sleep

recommendations needs to include both detailed explanations about the reasons behind the

recommendations, and utilize a conversations-based approach that takes into account each family’s needs,

beliefs, and the context of their lives.

50,51

Further, AI/ANs may be less likely to receive critical recommendations about safe sleep environments

from health care providers. In a study of 2016 Pregnancy Assistance Monitoring System (PRAMS) data

in 29 states, compared to non-Hispanic White mothers, non-Hispanic AI/AN mothers had lower reports of

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January 15, 2021 6

receiving advice regarding safe sleep environments, including placing an infant to sleep in a crib,

bassinet, or pack and play; and placing an infant’s crib or bed in the mother’s room.

Sleep Position. In a Centers for Disease Control and Prevention (CDC) examination of PRAMS data

from 2009-2015 in 15 states, non-supine (not on the back) sleep positioning decreased significantly

among most racial/ethnic groups, except among AI/AN respondents.

In 2016 PRAMS data, the

proportion of non-Hispanic AI/AN mothers reporting placing their infants on their back to sleep was

similar to that of non-Hispanic White mothers (82% and 84%, respectively).

Select studies have not

seen significant associations between sleep position or bed sharing and SIDS among AI/AN samples.

55,56

Findings such as these suggest that the relationship between SIDS and sleep position among AI/AN

infants is more complex than previously acknowledged.

Bed Sharing, Soft Objects, and Loose Bedding. In a CDC examination of PRAMS data from 2009-

2015 in 15 states, bed sharing prevalence was higher among AI/AN respondents compared with non-

Hispanic Whites.

In a 2016 study of PRAMS data, non-Hispanic AI/AN mothers reported lower use of

separate approved sleep surfaces compared with non-Hispanic White mothers, and notably higher rates of

sleeping on a couch or armchair compared to overall rates.

In the same study, non-Hispanic AI/AN

mothers were least likely to avoid soft bedding compared with non-Hispanic White mothers, and had

higher rates of their infants sleeping with a blanket compared to overall rates.

Overheating. In the 2002 Aberdeen Area Infant Mortality Study, researchers found that an AI baby’s

risk for SIDS and other sleep-related causes of infant death was higher if the infant was wearing two or

more layers of clothing.

During 1995-2013, the proportion of SUID during the winter months decreased

for all races/ethnicities except for AI/ANs, whereas the proportion during the summer months increased

for non-Hispanic Whites, non-Hispanic Blacks, and Hispanics, but did not change among AI/AN infants.

This indicates that recommendations against seasonal over bundling and overheating infants had

inconsistent success across racial/ethnic groups, and shows the importance of developing culturally

appropriate outreach and education strategies.

Commercial Tobacco Use

Smoking commercial tobacco may affect the development of the nervous system, and the infant's brain

stem in areas involved with arousal, heart and breathing functions, sleep, and body movement control.

Pregnant women who smoke commercial tobacco are also at higher risk for pregnancy loss, preterm labor

and birth, and having a low birth weight infant. Preterm birth and low birth weight are risk factors for

SIDS; the risk of SIDS goes up as a baby’s birth weight and gestational age go down.

Risk of SUID

more than doubles with any maternal commercial tobacco smoking during pregnancy; risk goes up in

relation to the average number of daily cigarettes during pregnancy; and any reduction in the number of

cigarettes smoked is associated with a small decrease in risk.

Overall

the AI/AN population has the highest prevalence of smoking commercial tobacco for both men

and women compared to any other population group in the U.S., although smoking rates can vary

considerably from one Tribe to another.

According to the CDC, 26% of AI/AN women smoke

commercial tobacco during their pregnancy—the highest rate of any racial/ethnic group, with rates much

higher among pregnant women in certain AI/AN Tribes.

In a recent study including participants from

two reservations in South and North Dakota, referred to as the Safe Passage Study, the risk is increased

for smoking commercial tobacco when the exposure continues after the first trimester, or with continuous

exposure as compared to those not exposed or who quit early (around the end of the first trimester).

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January 15, 2021 7

However, pregnant AI/AN women are less likely to receive clinician facilitated smoking cessation

interventions during prenatal care, highlighting the need for implicit bias training and education for

providers of AI/AN patients.

68,69

Further, there is a long history of commercial tobacco companies

targeting AI/AN communities through extensive promotions, sponsorships, and advertising campaigns.

Maternal Drinking

Maternal drinking during pregnancy increases an infant’s risk for SIDS and other sleep-related causes of

infant death. This is true particularly for AI/AN infants, based on the Aberdeen Area Infant Mortality

Study which found that:

• Binge drinking (five or more drinks at one time) during the mother’s first three months of

pregnancy increased the risk of SIDS eight times that of infants whose mothers did not drink.

• Any alcohol use during the three months before a woman became pregnant and during the first

three months of pregnancy increased the risk of SIDS six times that of infants whose mothers did

not drink during the same periods.

In the

Safe Passage Study, the risk of SIDS was as much as eight times higher for continuous drinkers

compared to those that did not drink.

The risk was increased when drinking continued after the first

trimester, or with continuous drinking during pregnancy compared to those that did not drink or who quit

early (around the end of the first trimester). In this study, there was no significant association between any

post-natal drinking or smoking between mothers of SIDS infants and mothers of infants alive at one-year.

Concurrent Commercial Tobacco and Alcohol Use

The Safe Passage Study further found that infants prenatally exposed to both alcohol and cigarettes

beyond the first trimester have a substantially higher risk of SIDS compared to those unexposed, exposed

to alcohol or cigarettes alone, or when the mother reported quitting in early pregnancy.

These results

held even after researchers took into account other known risk factors for SIDS, like lower socioeconomic

status and lower education levels, which suggests that the findings may be more broadly relevant.

Breastfeeding

Breastfeeding is associated with a reduced risk of SIDS.

In national data from 2015, 18% of AI/AN

infants were exclusively breastfed for their first six months. Compared to other races/ethnicities, AI/ANs

have the second lowest rates of breastfeeding initiation (76%), and the third lowest rates of breastfeeding

duration at six months (55%) and 12 months (31%).

An analysis of New Mexico PRAMS data showed

AI women were less likely to report breastfeeding in the hospital than other racial/ethnic groups, and less

likely to say they were encouraged to breastfeed on demand than other groups.

A study in Montana

reported on the challenges to breastfeeding among AI/AN communities related to community stressors,

such as a lack of health care infrastructure limiting prenatal breastfeeding counseling, historical trauma,

and substance use.

Recommendations include strengthening family and intergenerational relationships,

such as by involvement of grandmothers and health care professionals to support breastfeeding and

address identified stressors.

A study i

ncluding Tribal communities in the Pacific Northwest reported the need for enhanced education

about the timing and methods for the introduction of solid foods, strengthening social networks to support

healthy infant feeding choices, and expanding the perceived value of breastfeeding to include broader

health benefits, particularly in the context of childhood obesity.

Study authors also noted the diversity of

customs and beliefs across Tribal communities, highlighting the importance of designing interventions

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January 15, 2021 8

with communities. Many Tribes and urban Indian communities are encouraging breastfeeding by focusing

on its cultural role, and promoting policy changes to support breastfeeding in hospitals, workplaces, and

communities.

79,80,81

Some bre

astfeeding advocacy groups encourage bed sharing to promote breastfeeding, and promote that

bed sharing is safe among infants who are breastfed (a protective factor for SIDS) and infants whose

mothers do not smoke, drink alcohol, or use illicit substances. However, the issue of infant safe sleep in

the context of breastfeeding while bed sharing is debated.

The 2016 AAP guidelines describe that

infants who are brought into the bed for feeding or comforting should be returned to their own crib or

bassinet when the parent is ready to return to sleep.

Parents and other caregivers should be especially

vigilant as to their wakefulness when feeding infants on couches or armchairs, as sleeping on couches and

armchairs creates a high risk of infant death, including SIDS.

Health Care Access

AAP guidelines for SIDS risk reduction highlight substantial epidemiologic evidence linking a lower risk

of SIDS for infants whose mothers obtain regular prenatal care.

Lack of prenatal care means fewer

opportunities for education and support related to safe infant care practices, commercial tobacco smoking

cessation, and breastfeeding. In 2017, compared to non-Hispanic White mothers, a lower proportion of

AI/AN mothers received prenatal care in the first trimester (63% vs. 82%), and a higher proportion

received late or no prenatal care (13% vs. 5%).

AI/AN women experience barriers specifically related to

prenatal care, including lack of access and continuity of care, and lower quality of care.

The U.S. govern

ment's unique responsibility to provide the AI/AN population with medical care is based

in established treaties and laws, however high proportions of AI/AN people lack access to health care,

increasing their risk for poor health outcomes.

88,89,90

In a study of 2009 PRAMS data from 29 states,

AI/AN women had lower odds of stable health insurance coverage than unstable coverage around the

time of pregnancy, and higher odds of reporting Medicaid coverage than private insurance at delivery

compared to White women.

In a study of National Health Interview Survey (NHIS) data before the

Patient Protection and Affordable Care Act was implemented, a striking proportion of AI/ANs in the

study did not have health insurance and many cited costs as the reason.

In the same study, compared to non-Hispanic Whites, AI/ANs in urban areas had 20% higher odds of

reporting not receiving health care due to cost, and 70% higher odds of reporting a lack of a usual place to

go when sick. Other barriers to care reported in this study, including wait times in the doctor’s office and

on the phone, and limited office hours, highlight the capacity challenges faced by clinics serving urban

AI/AN communities and other groups in urban areas.

93,94

Persistent documented barriers to care for

AI/AN people also include: cultural differences creating problems with provider communication,

discrimination (whether intentional or not), perceptions of bias and mistrust, lack of confidence in ability

to get health care, dissatisfaction with care, and differences in beliefs and attitudes about health

care.

95,96,97,98,99

Culturally appropriate prenatal care is critical to improve outcomes among the AI/AN

population.

100,101

Social and Cultural Context

It is critical to understand the social and cultural context in which AI/AN people live and raise their

families to effectively support SUID and SIDS risk reduction policies and practices. Historical oppression

and trauma, ongoing systemic racism, and resilience through culture are key aspects of this context for

AI/AN people.

102

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Historical Oppression and Trauma. Historical oppression and current experiences of trauma affect

SIDS risk.

103

For AI/AN people, historical trauma includes multiple layers of individual, group, and

intergenerational traumatic experiences that have undermined the social and cultural fabric that once

supported vibrant and intact AI/AN families. Such oppression encompasses historical land dispossession,

forced removal, assimilative boarding schools or relocation policies, prohibition of spiritual practices, and

environmental degradation.

104

Historical trauma from colonialism and federal policies resulting in cultural

genocide have a continuing negative impact on AI/AN families, passing from generation to generation.

105

Development and evaluation of healing intervention models, grounded in Indigenous worldviews and led

by AI/AN people, are needed in efforts to address these traumas.

106,107

Systemic Racism. Systemic racism is a root cause of adverse health outcomes among AI /AN people and

is embedded in policies and funding for housing, health care, education, and employment, which

determine opportunities, risks, and resources impacting the capacity of AI/AN families to create a safe

infant sleep environment.

108,109

For example, homelessness and unstable housing are a serious problem for

AI/AN families in both urban and rural areas of the U.S.

110

Approximately 10% of mothers of AI/AN

infants in California were homeless or did not have a regular place to sleep at night during their

pregnancy, nearly three times the rate for the state overall; and more than 10% reported having to move

during their pregnancy due to problems paying the rent or mortgage.

111

Nearly 20% of mothers of AI/AN

infants in the same California study reported that either they or their partner experienced job loss or a

reduction in hours or pay while they were pregnant.

112

However

, racial health disparities persist regardless of socioeconomic status and upstream social

factors.

113

Cultural racism, which labels as inferior the values, language, imagery, symbols and

assumptions of selected racial groups, manifests through negative stigma, stereotypes, and conscious or

unconscious bias within institutions and norms.

114

These negative racial stereotypes (e.g., being lazy,

unintelligent, or violent, and having unhealthy habits) against AI/AN people have been reported in

national studies and can impact the quality of clinical care among other key resources.

115

The lack of

positive, multidimensional representations of AI/AN people within society also contributes to cultural

racism, and is being reclaimed in part through the infusion of accurate and contemporary representations

of and by AI/AN people.

116

The psy

chosocial stressor of racial discrimination is also a significant risk factor for adverse birth

outcomes.

117

In a recent California study, 20% of mothers of AI/AN infants reported worrying about

racism somewhat or very often across their lifetime, compared to only 14% of mothers overall.

118

Further,

exposure to stressful life circumstances over the course of a woman’s life is thought to impact birth

outcomes, such as low birth weight and prematurity, which are tied to SIDS risk.

119

In a study of PRAMS

data in 19 states, more than one in three AI/AN women reported experiencing traumatic stressors just

before or during pregnancy; the highest percentage across all other racial/ethnic groups.

120

For AI/

AN people in urban areas, a loss of connection to Tribal social networks can result in lack of

social support, high stress, and diminished cultural ties.

121,122

A 2016 study reported on findings from

discussions with AI/AN parents in four urban areas, in which parents highlighted community patterns

such as alcohol and tobacco use, adolescent parenting, and violence as challenges to creating a safe

environment for their infants. Other specific barriers to infant health and safety practices were a lack of

money, housing, transportation, and childcare; as well as social isolation and stress, especially for

adolescent parents.

123

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Culture as Medicine. Despite experiencing historical and current oppression, AI/AN families,

communities, cultures, and governments have always had inherent assets that promote healing and

wellbeing. These include drawing strength from place of origin, connection with the natural world,

traditional practices, cultural identity, language and symbols, kinship ties, spirituality and religion,

ceremonies, community activities, and humor.

124,125

One model of Native women’s health describes how

cultural factors such as community, traditional healing practices, and Native identity function as buffers

against stressors.

126

Connection with Native identity and culture serves as a vital protective factor, which

could intervene against increased risk for SUID and SIDS within AI/AN communities.

127,128,129,130,131

AI/AN parents in four urban areas identified facilitators for keeping their infants healthy and safe, and

breaking unhealthy patterns. They described a strong Native identity; Native-specific resources, such as

those offered at urban Indian health organizations; control over their own environment, such as

determining who they allow around their infant, and having consistent housing; shared values among

caregivers; and social support.

132,133

These findings on the value of urban Indian health organizations to

urban dwelling AI/AN people have also been reported in other studies.

134

The strength and resilience of

AI/AN people should be emphasized in efforts to promote health and wellbeing, acknowledging that the

answers to challenges are known within AIAN communities.

135

Promising Practices

Persistent high rates of SUID and SIDS among the AI/AN population likely means risk reduction and

other outreach campaigns for the general population are not reaching AI/AN communities, are not

addressing the most critical factors, or are not being presented in a way that would reduce the risk or

disparities experienced by this group. A version of the social-ecological model presented by the National

Action Partnership to Promote Safe Sleep is used to outline this section, in which findings from reviews

of evidence on safe sleep interventions are described, highlighting studies including data on the AI/AN

population where available. Illustrative examples of efforts to address SIDS and other sleep-related causes

of infant death among the AI/AN population are provided, with the goal of considering promising

practices and lessons learned.

Influencers and Organizations

Focus group participants, including AI mothers and other caregivers, in Michigan described various items

as being influential on mothers’ decisions about infant sleep environment, e.g., safe sleep materials and

speaking with staff from hospitals, and home visiting programs such as Healthy Start.

136

Furthermore,

participants described family and friends with experience with infants as influential for young mothers.

Fathers were also described as influential in decisions about sleep location, particularly related to not bed

sharing.

A 2017 revie

w of evidence on safe sleep position interventions showed that those implemented at the

caregiver, health care provider, and hospital levels (where there were not already quality improvement

initiatives), as well as national campaigns, appear to be most effective in increasing exclusive back sleep

position in infants.

137

Authors of the 2017 review also recommended that future evaluations assess the

effectiveness of evidence-informed interventions by race/ethnicity due to substantial variation in

adherence to safe sleep recommendations among racial and ethnic subgroups. Health communication

campaigns have the greatest, most lasting impact when conducted in conjunction with health and social

service systems that provide access to essential services while reinforcing educational messages.

138

Healthy Native Babies Project Literature Review

January 15, 2021 11

Community

A systematic review of prenatal and infant-toddler health promotion programs in the Canadian Indigenous

population examined potential underlying program mechanisms that could explain positive program

outcomes.

139

The study found that programs that built in local Indigenous community investment and thus

achieved a sense of local community program ownership, and subsequent sustained local program

participation, were successful in positively impacting a diverse range of prenatal and child health

outcomes across a range of Indigenous populations and settings. Specifically, the following criteria were

examined within the review, and defined as Indigenous community investment-ownership-activation:

• Prioritization and validation of community-based experiential knowledge;

• Integrated commitment to community development/capacity building;

• Local cultural grounding;

• Using social networks and community opinion leaders to endorse/promote program;

• Focus on sustainability of the program; and/or

• Building on existing community structures/infrastructures.

A similar revi

ew of programs within the AI/AN population in the U.S. was conducted using the same

search strategies and criteria as the review in the Canadian Indigenous population.

140

Likewise, programs

focused on reduction of risk factors relevant for SIDS, that included at least two elements of Indigenous

community investment-ownership-activation reported positive results.

A review of nati

onal health communication campaigns for the AI/AN population highlighted the

importance of incorporating AI/AN cultural concepts and practices in a way that features the strengths of

the community.

141,142

An emphasis on strength-based concepts, such as political and cultural sovereignty,

self-determination, and spirituality, is an effective way to counteract the historical trauma and cultural

degradation that impact AI/AN communities.

143

While differences among communities exist, AI/AN

values and beliefs can still be incorporated effectively into programs through practices common across

many Tribes, such as oral teachings and learning by observing and through experience.

144

Policy and Society

A review of peer-reviewed literature on safe sleep interventions between 1990 and 2015 strongly

emphasized the importance of multi-pronged, consistent messaging across multiple levels tailored for

target populations.

145

Authors of a study that compared selected world populations by SUID and SIDS

rates, and selected risk factors, noted that recommendations for social policy makers should accompany

recommendations to individual caregivers and health care providers to have an impact on underlying

societal risk factors for SUID and SIDS.

146,147

In other words, programs should not expect individuals to

address the burdens placed on them by history and an inequitable social structure. The context, which

affects individuals and communities’ ability to implement positive change, needs to be addressed in any

culturally relevant SUID and SIDS risk reduction effort.

148

Sample Programs

Select efforts to address SUID, SIDS, and infant health among AI/AN communities are outlined here with

the goal of considering potential promising practices.

 The federally e

ndorsed Family Spirit Home Visiting Program by the Johns Hopkins Center for

American Indian Health, in partnership with the White Mountain Apache, San Carlos Apache,

and Navajo Tribal communities, has shown significant positive impacts on parenting knowledge,

Healthy Native Babies Project

Literature Review

January 15, 2021

parental locus of control, depressive symptoms, externalizing problems, and use of illegal drugs

and marijuana.

149

A secondary analysis of this model, which assessed parental competence,

maternal emotional and behavioral health outcomes, and child emotional and behavioral health

outcomes among young Native American mothers and their children, reported that unstable

housing, parity, and low educational attainment were moderators of intervention effectiveness,

highlighting the need to tailor intervention content to meet families’ most salient needs.

150

 Another home visiting model being implemented among the AI/AN population includes the

Southcentral Foundation’s Nutaqsiivik Program. Using the Nurse-Family Partnership model,

the program provides prenatal, neonatal, and post-partum care, including home visits, and

previously reported a decrease in deaths through its program.

151

 Th

e Safe Sleep, Sweet Dreams program in the IHS Aberdeen Area implemented community-

sed, home visiting education for SIDS risk reduction and in 2007 reported between 5% and

74% knowledge gains in nine risk areas.

152

Authors noted that education delivered by hospital or

visiting programs staff was well accepted, inexpensive, and produced significant and meaningful

improvements in knowledge; but also noted the need for examination of follow-up behaviors, not

assessed in this study.

 A decrease in the Alaska Native fetal-infant mortality rate in 2010 and 2011, especially in rural

areas, was reported to have been due in part to statewide efforts related to preventing post-

neonatal sleep-associated deaths, including the Healthy Native Babies Project (HNBP) trainings,

which took place in two rural areas with the highest SIDS rates in the state at that time.

153

Also in

Alaska, Healthy Alaska Babies is an infant safe sleep “train the trainer” workshop for health

care, public health, and social services workers which adapted the HNBP materials for their local

context.

154

 Another example of an adaptation of the HNBP materials is the Inter-Tribal Council of

Michigan’s Infant Safe Sleep Resource Site for parents, providers, and Tribal home visitors.

The resources include a video to educate parents about safe sleep guidelines; a free, online video

course for Indigenous women caring for newborns; and a toolkit to educate Tribal leaders about

the importance of infant safe sleep, including action items for the promotion of infant safe sleep

in Tribal policy development, strategic planning, and community education.

155

 The 1,000 Grandmothers: Infant Safe Sleep Project was developed by the International

ssociation for Indigenous Aging (IA2) and the Michigan Public Health Institute, funded by the

CDC in four AI Tribes, and adapted from the HNBP materials. The IA2 project team developed

collaborative relationships with selected elder Tribal participants–especially grandmothers–to

conduct focused mentoring and education for young mothers. The pilot project was implemented

in geographically and culturally diverse Tribes, i.e., the Turtle Mountain Band of Chippewa

Indians in North Dakota; the Eastern Band of Cherokee Indians in North Carolina; the

Hannahville Indian Community (Potawatomie); and the Sault Ste. Marie Tribe of Chippewa

Indians. Pre- and post-interviews and quantitative assessments indicate that educational strategies

were effective.

156

Project presentations also shared practical lessons learned.

 The Coming of the Blessing Initiative, begun in 1998 by the women of Wind River Indian

Reservation and later supported by the March of Dimes, aims to address disparities in birth

outcomes for AI/AN families using a perinatal education booklet and adaptation of a perinatal

Healthy Native Babies Project

Literature Review

January 15, 2021

education curriculum called Becoming a Mom. The booklet project expanded to include support

for educators on any reservation to provide culturally appropriate prenatal education, a photo

exhibit celebrating AI/AN families and babies, and a culturally appropriate AI/AN appendix to

the curriculum. Reservations in North Dakota, Wyoming, New Mexico, Nevada, Arizona, Alaska,

and Montana have participated in Coming of the Blessing trainings.

157

 Native Generations is a nationwide campaign addressing high rates of infant mortality among

AI/ANs in urban areas. The campaign promotes infant mortality protective factors, such as

increased use of Native-specific resources (including health care, support services, and

programs), and connection to Native identity, culture, and community. The materials include an

11-minute video, and guides and flyers for sharing the video hosted on a dedicated webpage. Pilot

survey data indicate the video may help increase awareness and connection.

158

 The Bedtime Basics for Babies program, a large, free crib and education program, reported a

change

in knowledge and practices of safe infant sleep in a large proportion of participants.

However, there was no change in intention to place infants on their back for sleep among AI

mothers in Washington.

159

The Bedtime Basics program is no longer active, but Cribs for Kids is

another program that provides cribs for mothers who cannot afford them, and educates mothers

about the dangers of unsafe-sleep environments.

160

 Native populations around the world may have originated the concept of Back to Sleep with their

traditio

nal use of the cradleboard, the Wahakura, or other culturally appropriate sleep

surfaces.

161,162

In the United States, the specific design of a cradleboard differs from Tribe to

Tribe, but is essentially a handmade, framed, flat basket or board. Native teachings about

cradleboards say they keep the baby safe in a distinct location, help with the child’s skeletal

development, strengthen neck muscles, and provide an opportunity for the infant to be visually

and emotionally stimulated by his or her environment and family.

Many Tribes and urban Indian community centers offer classes on how to make and use

cradleb

oards. Cradleboard classes provide safe sleep education, a safer sleep product, and social

support for expectant families. The classes and support also help AI/AN mothers connect with

their culture, which may be protective against infant mortality.

163

In Was

hington State, the Native American Women’s Dialog on Infant Mortality (NAWDIM),

offers cr

adleboard classes in and around Seattle. NAWDIM is a collective of community

members, social service and medical providers, and allies. Cradleboard class attendees spend the

day constructing cradleboards from preassembled components, building community with other

families, and learning about nutrition, breastfeeding, and the best ways to keep their baby safe

during sleep.

164

Literature Review

January 15, 2021 14

Healthy Native Babies Project

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sleep practices. Pediatrics, 144(5).

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Hirai, A.H., Kortsmit, K., Kaplan, L., Reiney, E., Warner, L., Parks, S.E., Perkins, M., Koso-Thomas,

M., D'Angelo, D.V., & Shapiro-Mendoza, C.K. (2019). Prevalence and factors associated with safe infant

sleep practices. Pediatrics, 144(5).

Bombard, J.M., Kortsmit, K., Warner, L., Shapiro-Mendoza, C.K., Cox, S., Kroelinger, C.D., Parks,

S.E., Dee, D.L., D'Angelo, D.V., Smith, R.A., Burley, K., Morrow, B., Olson, C.K., Shulman, H.B.,

Harrison, L., Cottengim, C., & Barfield, W.D. (2018). Vital signs: Trends and disparities in infant safe

sleep practices — United States, 2009-2015. Morbidity and Mortality Weekly Report, 67, 39-46.

Hirai, A.H., Kortsmit, K., Kaplan, L., Reiney, E., Warner, L., Parks, S.E., Perkins, M., Koso-Thomas,

M., D'Angelo, D.V., & Shapiro-Mendoza, C.K. (2019). Prevalence and factors associated with safe infant

sleep practices. Pediatrics, 144(5).

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Elliott, A.J., Kinney, H.C., Haynes, R.L., Dempers, J.D., Wright, C., Fifer, W.P., Angal, J., Boyd, T.K.,

Burd, L., Burger, E., Folkerth, R.D., Groenewald, C., Hankins, G., Hereld, D., Hoffman, H.J., Holm, I.A.,

Myers, M.M., Nelsen, L.L., Odendaal, H.J., Petersen, J… Dukes, K.A. (2019). Concurrent prenatal

drinking and smoking increases risk for SIDS: Safe Passage Study Report. E Clinical Medicine, 19.

Bombard, J.M., Kortsmit, K., Warner, L., Shapiro-Mendoza, C.K., Cox, S., Kroelinger, C.D., Parks,

S.E., Dee, D.L., D'Angelo, D.V., Smith, R.A., Burley, K., Morrow, B., Olson, C.K., Shulman, H.B.,

Healthy Native Babies Project Literature Review

January 15, 2021 17

Harrison, L., Cottengim, C., & Barfield, W.D. (2018). Vital signs: Trends and disparities in infant safe

sleep practices — United States, 2009-2015. Morbidity and Mortality Weekly Report, 67, 39-46.

Hirai, A.H., Kortsmit, K., Kaplan, L., Reiney, E., Warner, L., Parks, S.E., Perkins, M., Koso-Thomas,

M., D'Ange

lo, D.V., & Shapiro-Mendoza, C.K. (2019). Prevalence and fact

ors associated with safe infant

sleep practices. Pediatrics, 144(5).

Ibid

Iyas

u, S., Randall, L.L., Welty, T.K., Hsia, J., Kinney, H.C., Mandell, F., McClain, M., Randall, B.,

Habbe, D., Wilson, H., Willinger, M. (2002)

. Risk factors for sudden infant death syndrome among

Northern Plains Indians. Journal of the American Medical Association, 288(21), 2717-27.

Parks, S.E., Erck Lambert, A.B., & Shapiro-Mendoza, C.K. (2017). Racial and ethnic trends in sudden

unexpected infant deaths: United States, 1995-2013. Pediatrics, 139(6).

Natti

e, E., & Kinney, H. (2002). N

icotine, serotonin, and sudden infant death syndrome. American

Journal of Respiratory and Critical Care Medicine, 166(12 Pt 1), 1530-

Malloy, M.H. (2013). Prematurity and sudden infant death syndrome: United States 2005-2007.

Journal of Perinatology, 33(6), 470-475.

Anderson, T.M., Lavista Ferres, J.M., Ren, S.Y., Moon, R.Y., Goldstein, R.D., Ramirez, J.M., Mitchell,

E.A. (2019). Maternal smoking before and during pregnancy and the risk of sudden unexpected infant

death. Pediatrics, 143(4).

Odani, S., A

rmour, B.S., Graffunder, C.M., Garrett, B.E., & Agaku, I.T. (2017). Prevalence and

disparities in tobacco product use among Amer

ican Indians/Alaska Natives — United States, 2010-2015.

Morbidity and Mortality Weekly Report, 66, 1374-1378.

Ibid

Elliot

t, A.J., Kinney, H.C., Haynes, R.L., Dempers, J.D., Wright, C., Fifer, W.P., Angal, J., Boyd, T.K.,

Burd, L., Burger, E., Folkerth, R.D., Groenewald, C., Hankins, G., Hereld, D., Hoffman, H.J., Holm, I.A.,

Myers, M.M., Nelsen, L.L., Odendaal, H.J., Petersen, J… Dukes, K.A. (2019). Concurrent prenatal

drinking and smoking increases risk for SIDS: Safe Passage Study Report. E Clinical Medicine, 19.

Tran, S.T., Rosenberg, K.D., & Carlson, N.E. (2010). Racial/ethnic disparities in the receipt of smoking

ces

sation interventions during prenatal care. Maternal and Child Health Journal, 14(6), 901-9.

Patten C.A., Koller K.R., Flanagan C.A., Hiratsuka V.Y., Hughes C.A., Wolfe A.W., Decker P.A.,

Fruth K., Brockman T.A., Korpela M., Game

z D., Bronars C., Murphy N.J., Hatsukami D., Benowitz

N.L., Thomas T.K. (2019). Biomarker feedback intervention for smoking ce

ssation among Alaska Native

pregnant women: Randomized pilot study. Patient Education and Counseling. 102(3), 528-535.

Center

s for Disease Control and Prevention, Office on Smoking and Health, National Center for

Chronic Dis

ease Prevention and Health Promotion. (2019) American Indians/Alaska Natives and Tobacco

Use. htt

ps://www.cdc.gov/tobacco/disparities/american-indians/index.htm Accessed September 5, 2020.

Iya

su, S., Randall, L.L., Welt

y, T.K., Hsia, J., Kinney, H.C., Mandell, F., McClain, M., Randall, B.,

Habbe, D., Wilson, H., Willinger, M. (2002). Risk factors for sudden infant death syndrome among

Northern Plains Indians. Journal of the American Medical Association, 288(21), 2717-2723.

Elliott, A.J., Kinney, H.C., Haynes, R.L., Dempers, J.D., Wright, C., Fifer, W.P., Angal, J., Boyd, T.K.,

Burd, L., Burger, E., Folkerth, R.D., Groenewald, C., Hankins, G., Hereld, D., Hoffman, H.J., Holm, I.A.,

Myers, M.M., Nelsen, L.L., Odendaal, H.J., Petersen, J… Dukes, K.A. (2019). Concurrent prenatal

drinking and smoking increases risk for SIDS: Safe Passage Study Report. E Clinical Medicine, 19.

Ibid

Task Force on Sudden Infant Death Syndrome. (2016). SIDS and other sleep-related infant deaths:

Updat

ed 2016 recommendations for a safe infant sleeping environment. Pediatrics, 138(5). e20162938.

U.S. Depar

tment of Health and Human Services, Centers for Disease Control and Prevention. (2015).

Rates of any and exclusive breastfeeding by sociodemographics among children born in 2015. National

Immunization Survey. http://www.cdc.gov/breastfeeding/data/nis_data/rates-any-exclusive-bf-socio-dem-

2015.htm Accessed January 27, 2020.

Healthy Native Babies Project Literature Review

January 15, 2021 18

Sebastian, R. A., Coronado, E., Otero, M. D., McKinney, C. R., & Ramos, M. M. (2019). Associations

between maternity care practices and 2-month breastfeeding duration vary by race, ethnicity, and

acculturation. Maternal and Child Health Journal, 23(6), 858-867.

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163

Ibid

164

Ibid