Background

The intentional and planned introduction of alcohol as a means of colonization is the precipitating factor in the disproportionate burden of substance use experienced by AI/AN communities (Johnston & Boyle, 2013; Unger et al., 2020). In addition to this history, contemporary conditions in many AI/AN communities are associated with an increased risk of alcohol and drug use. These conditions include historic trauma, poor employment prospects, poverty, housing insecurity, and lack of access to healthcare (U.S. Department of Health and Human Services, n.d.; Brownell et al., 2019). Although information is limited on the prevalence of substance use by pregnant women in AI/AN communities, what is clear is that this use affects the health and development of AI/AN children and the well-being of their families.

PSE, and in particular PAE, can lead to negative physical and psychosocial outcomes. In the case of opioid exposures, neonates can have withdrawal-like symptoms that can persist for up to two weeks after birth, although the research is not conclusive on whether these physical impacts persist later in life. PAE can lead to physical impacts such as growth impairment and distinguishable facial differences (American Academy of Pediatrics, 2019; Bagheri et al., 1998; May et al., 2010). Psychosocial impacts associated with PAE can include cognitive impairment; impaired executive function skills such as behavior regulation, decision-making, and planning; a greater likelihood of having mental health challenges such as depression and anxiety; and higher rates of contact with juvenile justice and child welfare systems. These can occur in the absence of distinguishable facial characteristics (Bagheri et al., 1998; Beckett, 2011; Brownell et al., 2019; Kaemingk & Halverson, 2000; Rai et al., 2017). These impacts can rise to the level of diagnosable conditions (e.g., fetal alcohol syndrome (FAS), alcohol-related neurodevelopmental disorder, neurobehavioral disorder associated with PAE) that collectively are referred to as fetal alcohol spectrum disorders (FASDs).

There appear to be higher rates of FASDs for AI/AN children than for non-AI/AN children. Studies reporting prevalence rates for FASDs among AI/AN children have estimated 1 out of every 1000 births in some areas, whereas in specific communities, the estimate increases to 41 out of every 1000 births (Beckett, 2011; Montag, Romero, et al., 2019). These variations are largely due to differences in identification or surveillance, study methodologies, geographic location, and ongoing challenges with data accuracy.

Instances of PSE in AI/AN communities often come to the attention of child welfare staff through a report of maltreatment and can be cited as a cause for out-of-home placement. A 2019 study in Washington state found that AI/AN infants were not only the most likely racial or ethnic group to experience PSE across all substances, but they also had higher odds of being reported to child welfare and higher odds of removal from their parents as a result (Rebbe et al., 2019).

Despite these troubling realities facing AI/AN families experiencing PSE, tribal communities hold the deep cultural and community strengths to solve these challenges, and many have proven to be leaders in developing innovative, healing supportive services. Given both the challenges described above and the important work done to address these issues, this effort was included as a component of an evaluation project funded by Children’s Bureau in an interagency agreement with the Centers for Disease Control and PreventionFootnote 1. An environmental scan was undertaken to examine issues with measurement, the impacts and implications of PAE and PSE, the disproportionate challenges the issues present in AI/AN communities, and the critical role that child welfare providers play when they help families experiencing PAE or PSE. The goal of this scan was to better understand (1) the scope, underlying contributing causes, and impact of PAE and PSE in tribal communities; (2) the service needs of those affected by PAE and PSE with a specific emphasis on child welfare needs; and (3) existing programs developed by and for tribal populations to address those needs.

Methods

An environmental scan is a method for gathering and organizing a diversity of information to understand a phenomenon or to support decision-making (Graham et al., 2008). Environmental scans are useful when exploring a topic with limited existing research. The aim of this scan was to understand the extent and history of PAE and PSE in reservation and urban native communities, the impacts of PAE and PSE, and the service needs of those affected by PAE and PSE. The scan also intended to uplift innovative tribal programs that have been developed to address PAE and PSE.

The scan was exploratory in nature and was conducted with the intention of gathering a depth of resources on the topic. The intention was to emerge a body of resources from diverse practice and research audiences, including peer-reviewed and non-peer-reviewed, publicly available resources (websites, pamphlets, videos, etc.), to understand the landscape of issues and practices surrounding this topic. Given the wide array of types and focus of the resources, this study did not seek to determine the rigor or quality of material collected or to aggregate findings across studies or materials. The information gathering for the study included three major activities: a search of peer-reviewed literature, a search of website and other gray literature, and conversations with experts in the field. The peer-reviewed literature search and the search of website and gray literature occurred simultaneously. The results of these searches helped inform the topics discussed in the expert conversations that occurred once the other search methods had concluded. The components of the environmental scan are detailed below.

Peer-Reviewed Literature Search

The peer-reviewed literature search was conducted using EBSCOhost. Four relevant databases were identified for the search: MEDLINE Complete, Psychology and Behavioral Sciences Collection, APA PsycInfo, and Sociology Source Ultimate. Boolean search strings were developed to identify the population and content.

Population terms included Indian* OR native american* OR native* OR alaska native* OR alaskan native* OR tribal OR tribe* OR indigenous OR first nation* OR aborigin*.

PAE and PSE terms included Prenatal* OR neonatal* OR fetal alcohol spectrum disorders OR alcohol related birth defects OR FAE OR fetal alcohol effects OR FASD OR fetal alcohol syndrome OR prenatal exposure* OR prenatal alcohol exposure* OR prenatal substance exposure*.

Included resources met two broad criteria:

  • A focus on North American indigenous (American Indian/Alaska Native, First Nations) children and/or their caregivers (at least 50% of reported sample for studies reporting sample; stated primary focus of theoretical pieces)

  • Inclusion of information or findings related to increasing the awareness, knowledge, and skills of professionals and families about the prevalence, impact, and service needs of children with PSE/FASDs and/or helping identify children with PSE/FASDs, who are not identified at birth

Additional limiters included the following:

  • Published from January 1999 to March 2020Footnote 2

  • Peer-reviewed

  • Published in English

Gray Literature

Gray literature (i.e., materials and research produced by organizations outside of traditional academic publishing channels and typically not peer-reviewed) was collected by the study team, identified through a list of known websites with potential content and by using search terms developed through the peer-reviewed search to identify other material via a search engine. The organization websites that were searched are in Appendix 1. In addition to these websites, the team conducted a broad search using Google.com. Conversations with experts also included requests for relevant material that may not have been identified in the preliminary search. This material included both peer-reviewed and gray literature.

Expert Conversations

Eight individuals who were known to the research team as having expertise in native child welfare and PAE and PSE were invited to provide additional content expertise to the scan through interviews. This group of experts was identified because of their contributions to the field in the areas of practice, research, policy, and advocacy. In some cases, these individuals were identified as potential experts through the peer-reviewed and gray literature. The study team scheduled and recorded conversations with these subject matter experts between January and March 2021. These were loosely structured and designed to allow experts to share what they believed was most important for the study team to know about the topic area. These conversations were recorded with permission and transcribed. The discussion guide used for these conversations is included in Appendix 2.

Synthesis of Information and Identification of Themes

Content analysis was used to synthesize and organize collected material and transcripts from expert conversations. To ensure that the peer-reviewed and gray literature and information received from the expert conversations fulfilled the scan’s aims, content codes were developed a priori and applied to each conversation transcript, and each resource was identified through the literature search. Eight broad content codes were applied to the material:

  • Prevalence of PAE/PSE or FASD in tribal communities

  • Services for native children

  • Services for pregnant women/caregivers

  • Resources for providers/practitioners; impact of PAE/PSE or FASD on individuals

  • Service needs

  • Identification of PSE or FASD

  • Innovative tribal programs

All resources (except for the interview transcripts, which were coded separately) were added to a master spreadsheet and reviewed to determine whether they met the inclusion criteria applied to peer-reviewed literature. While they were screened for inclusion, they were also reviewed for content.

It was noted within the spreadsheet if the article or resource addressed a content code. If it did, that article or resource had that code applied to it. Codes were not mutually exclusive, and most articles and resources received multiple content codes. Similarly, the content codes were reviewed before review of the expert interview transcripts and applied to what was covered in those interviews.

Results

The study team identified 48 resources specific to child welfare and related fields with content focused on scope, impact, and service needs of children with PSE or FASDs; issues related to identifying children with PSE or FASDs who are not identified at birth; and innovative programs that work to enhance practice and to improve outcomes of children with PSEs and their families. These 48 resources are listed in Appendix 3.

The environmental scan yielded 35 peer-reviewed articles that met inclusion criteria. These came primarily from the initial search and were supplemented by resources provided by expert interviewees. The scan included 13 gray literature sources that were identified through the review of websites or provided by experts (Fig. 1).

Fig. 1
figure 1

CONSORT diagram. Select findings, organized into key themes, are described as follows, with reference to a few exemplary resources substantiating the themes

Full size image

Key Themes

A recurring theme from the analysis of these resources and the expert conversations was that the root causes of substance use in most if not all tribal communities stem from historical oppression and trauma (Brown et al., 2016; Johnston & Boyle, 2013; Jorda et al., 2021; Unger et al., 2020). Impacts from these historical events continue to be transmitted today through intergenerational trauma pathways that are compounded by the persistent economic and social marginalization experienced by many tribal communities (U.S. Department of Health and Human Services, n.d.; Brownell et al., 2019; Johnston & Boyle, 2013; Unger et al., 2020). For this reason, the impact of PAE and PSE is felt at both the individual and community levels.

Another factor in the disproportionate burden of PAE and PSE in AI/AN communities is persistent identification challenges of FAS, FASDs, and PSEs. One of the subject matter experts interviewed in this scan who has spent many years working clinically with children and caregivers affected by FAS stated, “One out of every 830 kids with an FASD is currently diagnosed. I’m going to repeat that. One out of every 830.” This experiential evidence combined with evidence from the literature suggests that only a small number of children who would benefit from services and supports are currently receiving them (Brownell et al., 2019). At the same time, AI/AN caregivers and pregnant people who have more contact with the child welfare system are at greater risk for child removal than non-AI/AN caregivers and pregnant people (Brownell et al., 2019; Rebbe et al., 2019). Because of the higher risk of child removal, AI/AN pregnant people and caregivers may be less likely to seek services for alcohol or other substance-related concerns, which compounds challenges with identification and service provision.

The work identified three priority areas for intervention. The first intervention theme showed a need for education about the effect of alcohol and other substances on fetal development. Many women believe that some alcohol use in pregnancy is safe, and one survey found this was true among 61 percent of the First Nations women surveyed (Williams & Gloster, 1999). Westphal (2000) found that in a sample of urban AI/AN women, 22 percent reported drinking during pregnancy, but 90 percent reduced their use when they learned of their pregnancy. Montag, Calac, and Chambers (2019) also found that misunderstandings about how much other women were drinking and the risk associated with drinking while pregnant could influence a person’s decision to consume alcohol while pregnant. Multiple scan articles further noted that a key part of a multipronged intervention is community education about the acute and long-term impacts of alcohol and other substances on fetal and child development (May & Hymbaugh, 1989; Plaiser, 1989; Ye et al., 2020).

The second intervention theme centered on the importance of addressing mental health and providing economic support for expectant parents who use substances. Although education was enough to reduce rates of use, mental health supports and economic supports are often more effective at addressing the root causes of substance use challenges (Gameon & Skewes, 2021; Montag, Romero, et al., 2019). For example, one article shared with the environmental scan team by a subject matter expert found that several protective factors prevented substance use in pregnancy. These included living with someone, having 12 years of education or more, being employed, and not being depressed. Taken together, these factors could reduce the likelihood of a pregnant person using alcohol and tobacco by up to 229 percent (Jorda et al., 2021). A separate study found that women who were depressed were more likely to binge drink because of stress and trauma, which suggests that effective treatment of those concerns would decrease occurrences of binge drinking (Montag, Romero, et al., 2019).

Finally, the third key method of intervention that the scan identified was involvement in cultural practices and traditions. Because PAE and PSE, the planned introduction of alcohol, and economic challenges are all related to historic and contemporary efforts at colonization (Jorda et al., 2021; Unger et al., 2020), developing a positive identity as an AI/AN person and tapping into community resources can lay the groundwork for successful recovery and can address PAE and PSE at both the individual and community levels. Findings by Unger et al. (2020) and Brown et al. (2016) indicate that connection to a distinct cultural and ethnic identity, even when the identity faces oppression in society, is associated with a reduced likelihood of substance use. Taken together, these findings suggest that substance abuse interventions addressing the lived experiences and past and present realities of AI/AN people are likely to be successful (Brown et al., 2016). Although limited in the existing literature, the scan identified approaches, developed specifically for an AI/AN population, that have shown promise in addressing the challenges of PAE and PSE.

The scan indicated that some of the most potentially successful treatment options might include cultural engagement programming within substance use treatment programs, increased access to culturally specific traditional healing, and family support models. One expert interviewed as a part of the scan stated, “[Evidence-based tribal parenting classes are]… so needed in Indian Country because it is incorporating the traditions into parenting practices. Because our parents and grandparents, when they were forced into boarding schools, they lost those traditional parenting methods they used to have. So we have to help those more recent parents reestablish those traditions.” The Family Spirit program and the Maternal Outreach and Mitigation Services (MOMS) program from the White Earth Band of Ojibwe in Minnesota are two examples of models designed to provide support to AI/AN families that the scan identified. Family Spirit provides home visitation for AI/AN parents with an emphasis on holistic services for parents struggling with substance use and related emotional challenges. The model has been shown to reduce parental substance use and to improve several individual and family well-being indicators (Barlow et al., 2015). MOMS is a tribally designed outreach and support program for pregnant caregivers experiencing drug addiction (Center for Native Child and Family Resilience, n.d.).

Most of the findings of this review centered on individual or community-level interventions to address PAE and PSE. Importantly, some of the reviewed resources, most notably policy statements from the National Congress of American Indians and the American Academy of Pediatrics, acknowledged the need for change on a systemic level to effectively address the issue of PAE and PSE in tribal communities. The policy-level recommendations put forth by the National Congress of American Indians included establishing a national strategic plan to reduce FASD prevalence and to improve the quality of life of those affected; increase capacity for prenatal screening for PAE and PSE and increase resources for prevention efforts, identification, and development of FASD-informed services at the federal, tribal, state, and organizational levels; and the establishment of diagnostic criteria for FASD (National Congress of American Indians, 2019). These policy-level recommendations were largely echoed by the American Academy of Pediatrics (2019), which issued recommendations to Indian Health Service facilities regarding standards of care for opioid-exposed newborns. These recommendations emphasized early screening, holistic health service provision for families, and referrals to community partners and tribal organizations to support the family with ongoing needs after discharge from the hospital or birthing facility (American Academy of Pediatrics, 2019).

Discussion

The environmental scan resources and experts identified service approaches that have shown promise in identifying and addressing PAE and PSE. Tribal child welfare programs already use many of these practices, but more work could be done to fund, train, and expand effective approaches.

To effectively support healthy development of AI/AN children and to support the well-being of their families and communities, the scanned resources and experts pointed to several areas for investment and policy and practice improvement, including the following:

Policies That Support Family Preservation and Practices That Decouple Help-Seeking Behaviors from Child Removal to Increase Accessibility and Remove Barriers for Women Who Use Substances During Pregnancy

The scan resources highlighted several approaches that would benefit from further exploration, including harm reduction, community outreach, community health nursing, Head Start, supportive housing, economic support, traditional birthing supports, and mental health support services. Many of these approaches work to address the root causes of substance use in tribal communities, such as historical trauma and economic disadvantage.

Provision of Education on the Prevalence and Impact of PAE and PSE to Families and Service Providers

The environmental scan identified three major areas for education and training: (1) dispelling the myths and realities of alcohol and other drug use during pregnancy; (2) sharing information on the physical and psychosocial impacts of PAE, including FASDs; and (3) informing service providers and families of culturally informed resources and referral sources for those who suspect their child may show signs of an FASD. Interviewees noted that responses to PAE/PSE should not include child removal, as child removal has itself been identified as a traumatic stressor that can lead to an increased risk of substance use later in life (Brownell et al., 2019). These efforts can be aided by education about programs with a track record of preventing child removal resulting from substance use, such as those mentioned in the scan.

Improvement of Tribally Led Early Identification of PSE and FASD and the Necessary Follow-up Services

Many experts addressed the importance of early identification and screening but also the challenges faced by tribal child welfare programs that lacked adequate referral partners when services were needed. Supporting tribal child welfare programs’ participation in early assessment for PSE and PAE and documentation ensures that service providers have tools for capturing consistent and accurate data on the prevalence, scope, and needs of PAE, PSE, and FASDs within their service population. These practices can promote the development and implementation of cultural interventions and healing or enrollment in existing family support programs.

The scanned resources also drew attention to areas in which additional research was needed:

Updated and Standardized Studies on the Scope of PAE and PSE for AI/AN Populations

Multiple studies identified through the scan examined either prevalence of substance use during pregnancy or prevalence of infants and children born affected by these substances. The estimates varied widely, and most were 10 years old or older. A challenge with understanding the scope of PAE is that symptoms of alcohol exposures do not often clearly emerge until later childhood, which contributes to the underidentification of children who are affected (Brownell et al., 2019). Additional efforts to standardize methods and to update current estimates could shed light on the scope of PSE in AI/AN communities.

Qualitative Work Exploring the Lived Experiences of Those Affected by FASDs

Studies could yield valuable information about the strengths, challenges, and needs of people affected by FASDs as well as the perceived usefulness of any interventions and/or supports that people affected by PAE have received. The work of Gonzales et al. (2021) provides a promising example of this approach. The study team used a community-based participatory research framework to qualitatively understand tribal community members’ perspectives on FASD.

Examination of Community and Culturally Based Interventions

Few studies have described or assessed the effectiveness of traditional pregnancy and parenting supports or programs focused on building positive cultural identity and restoring the belief that children are sacred beings. These efforts hold tremendous promise in addressing PSE in AI/AN communities, and research could support and inform the use and wider dissemination of these practices.

Additional Study of the Prevalence and Impacts of Nonalcohol and Polysubstance Use During Pregnancy

Much of the research identified through the scan focused on alcohol use in pregnancy (given the focus of the funded project) but less on exposure to other drugs, including opioids. Many of the experts spoke of the need to better understand the ways in which methamphetamine, heroin, and other substances affect fetuses and children. Often, mothers use multiple substances along with alcohol, including during pregnancy. Hanson et al. (2016) found this to be true when they explored the epidemiology of substance-exposed infants at a Great Lakes hospital.

Examination of the Underlying Causes of Higher Prevalence of FASDs

FASDs seem to be more frequently occurring in AI/AN communities, and the cause of this disparity remains an area for further study. Research could explore issues such as drinking patterns, connections to historical or current trauma, and systemic challenges leading to inaccurate counts such as underidentification, which may underestimate rates of FASDs, or oversurveillance of AI/AN families, which may lead to higher rates of identification.

Conclusion

Substance use in pregnancy can affect the health and development of infants and children. Although estimates vary, this is a critical issue facing AI/AN communities rooted in both historical oppression and current contexts. This environmental scan collected 48 peer-reviewed and gray literature resources focused on providing the best available information on PAE and PSE in AI/AN communities. These resources, coupled with advice and expertise provided by leaders in the policy, research, and practice fields, suggest critical opportunities for investment and practice change as well as new directions in research.

For many reasons, child welfare agencies and departments frequently interact with families who use substances, and these interactions can result in out-of-home placements for children affected by PAE and PSE. Evidence collected through this environmental scan suggests that child welfare agencies could instead leverage their position in the field to be a source of referrals to supportive services for these families. These referral partners might produce the best outcomes when using a holistic approach to intervention, which includes physical, social, emotional, economic, and cultural considerations regarding well-being. Two programs that rose to prominence within the scan were MOMS (Center for Native Child and Family Resilience, n.d.) and Family Spirit (Barlow et al., 2015). These programs emphasized family preservation, positive AI/AN cultural identity, spirituality, and traditional healing methods to support families.

This environmental scan also indicated that additional research would be beneficial, especially in the areas of understanding the scope of the issue, exploring the lived experiences of people affected by PAE and PSE, building the evidence base for culturally relevant interventions, determining the impacts of nonalcohol substance use during pregnancy, and deepening understanding of the root causes of substance use. With additional information in these areas, child welfare practitioners in child welfare agencies, as well as those implementing and developing supportive family programming, will be better able to shift their responses to PAE and PSE in ways that will truly benefit those affected.