Infants, children, and youth in foster care with prenatal substance exposure: a synthesis of two scoping reviews

Abstract

Background: Infants, children, and youth in foster care have frequently experienced prenatal substance exposure (PSE), neglect, and maltreatment as well as disruptions in their relationships with families. They also have great capacity for overcoming early adversities. In this synthesis of two previously conducted scoping reviews, we aimed to identify and describe literature that identifies a range of interventions that support the health and development of this population.

Methods: This review integrates and extends two previously conducted scoping reviews, one focusing on infants and one focusing on children and youth, to synthesize themes across these developmental stages. The Joanna Briggs Institute scoping review methodology was employed for the current and previous reviews. A three-step search strategy identified published studies in the English language from January 2006 to February 2020.

Results: One-hundred and fifty-three sources were included in this review. Four themes were identified: (1) early screening, diagnosis, and intervention; (2) providing theoretically grounded care; (3) supporting parents and foster care providers; and (4) intersectoral collaboration.

Conclusion:Infants, children, and youth with PSE are overrepresented in foster care. Child welfare system planning should take a multi-sectoral approach to addressing the cumulative needs of this population and their care providers over developmental ages and stages. Although research remains limited, early screening, diagnosis, and developmentally and fetal alcohol spectrum disorder-informed intersectoral interventions are critical for optimizing outcomes.

Providing optimal care and supporting positive outcomes for children from infancy to adolescence requiring foster care has been a challenging area of service delivery within child welfare and appears to remain a major concern in the USA, Canada, and internationally (Fernandez and Delfabbro 2021). Infants, children, and youth with prenatal substance exposure (PSE) are a significant cohort in foster care that demonstrates specific health, socio-emotional, educational, and developmental needs. For the purpose of this review, we define the term PSE as ‘fetal exposure to maternal drug and alcohol use that can significantly increase the risk for developmental and neurological disabilities in the child’ (Child Welfare Information Gateway ND) . We employ this broader umbrella term to be inclusive of multiple potential diagnoses resulting from PSE, with two more well-known diagnoses that are neonatal abstinence syndrome (NAS, increasingly being called neonatal opioid withdrawal syndrome, NOWS, Patrick et al. 2019) and fetal alcohol spectrum disorder (FASD). Research also notes that polysubstance use during pregnancy is the norm, not the exception, with many children exposed to multiple substances, including tobacco, alcohol, and prescription medications (Jarlesnki et al. 2020).

It is critical that programs and services for this population are evidence-based, population-oriented, and accounted for in-service delivery models. However, best practice approaches in child welfare are still developing, including in relation to supporting children and families where PSE is a concern (Trocme et al. 2016). Research is increasingly highlighting the negative impact of cumulative disadvantage and the importance of long-term supports for children in foster care (Center on the Developing Child at Harvard University 2016). Thus, the purpose of this scoping review was to integrate two previously conducted scoping reviews, one focusing on infants in care with PSE and one focusing on children and youth in care with PSE, synthesize themes across these developmental stages, and identify and describe a range of interventions for supporting them and their families and caregivers that address the concern of cumulative disadvantage across the life course. Specific research questions addressed in this review included the following:

1. What are the characteristics of interventions and programs designed to support optimal physical, social-emotional, and cognitive development of infants, children and youth (from birth to 19) who are in foster care with PSE?

2. What are the characteristics of interventions and programs designed to improve the satisfaction and retention of foster and kinship care providers caring for this population?

3. What are the gaps for future intervention and program development, research and system and policy mapping for this population?

Background

It is generally recognized that there is a greater likelihood that child protection and foster care services will be involved when families and children are impacted by PSE (American Academy of Pediatrics, Waite et al. 2018). Prindle et al. (2017) report that parental substance abuse is a concern in approximately from 11% to 40% of the investigated reports of child maltreatment globally, with rates rising from 16% to 79% in the USA. This wide variation is influenced by reporting and classification processes, state policy context, cultural and ethnic background, and community determinants of health (Faherty et al. 2019, Meinhofer et al. 2020, Seay 2015). The US National Centre on Substance Abuse and Child Welfare (2016) reports that the overwhelming majority of children in foster care now have a parent with a substance use disorder. More recently, the opioid epidemic has contributed to a dramatic doubling in the number of children entering foster care between 2000 and 2017 (Meinhofer et al. 2020) .

For infants, PSE is most frequently reported within the context of prenatal opioid exposure and diagnosis of NAS. FASD is more challenging to diagnose before the age of three as currently used tests may not be sensitive to differences at young ages and indicators may be attributed to alternate explanations such as trauma (Hanlon-Dearman et al. 2020). Sanlorenzo et al. (2018) report an evolving epidemiology of NAS in the USA, with variability across states and disproportionate impact in rural areas, among the Medicaid population and across different cultural groups. From 2000 to 2016, the incidence of NAS increased from 1.2 to 8.8 per 1000 hospital births in the USA. Similar increases are noted in other countries (Corsi et al. 2020, Davies et al. 2016). Consequently, an increase of 10,000 infants was noted from 2011 to 2017 in the US foster care system (Patrick et al. 2019). Infants and young children up to the age of five now represent over 41% of children in care.

From a child and youth perspective, PSE within the context of foster care is represented in the literature more commonly as FASD. FASD has been identified as the leading cause of developmental/intellectual disability in Western society and as such has implications for health care, education systems, and social service involvement (Brownell et al. 2011). Popova et al. (2019) conducted a global estimate of FASD prevalence and identified children in foster care as a special subpopulation with rates substantially higher than the general population. The pooled prevalence in the USA was noted to be 251.5 per 1000 for children in foster care, compared with 7.7 per 1000 in the global general population. Chasnoff et al. (2015) report that foster and adopted children with PSE are often misdiagnosed along the spectrum or, more frequently, have a missed diagnosis. Although diagnosis before the age of six has been recommended as ideal, in reality assessment services are hard to access and often delayed, thus increasing the risk of adverse outcomes (Benz et al. 2009).

Research shows that early intervention and support can improve the course of development in both the short and long term (Olson et al. 2007). However, Bertrand (2009) has noted that historically, interventions for children with FASD have been extrapolated from those employed with children with other disabilities and from practical experience. More recently, systematic reviews have been published in relation to interventions for infants with NAS and children and youth with FASD; however, they are not specific to the foster care context (Bertrand, 2009, Peadon et al. 2009, Reid et al. 2015).

A unique opportunity for collaborative research emerged when the two authors of this paper each received funding from different sources to study a similar topic. Marcellus et al. (2017) was interested in studying interventions and programs that supported the development and well-being of infants with PSE in foster care, while Badry (2018) was interested in the same context, but with children and youth. A parallel approach was taken up to develop a shared methodology for each project, allowing for further synthesis of the literature located across both studies. The search strategy described below is a merging and updating of these two scoping reviews. All search processes were identical other than the population of focus, facilitating a developmental analysis from infancy to the time when youth exit foster care, typically at approximately age 19. Currently, no review of the literature exists from this perspective. We have employed the PRISMA-ScR (Preferred Reporting Items for Systematic reviews and Meta-Analysis-extension for Scoping Reviews) checklist to guide reporting in this article (Tricco et al. 2018).

Materials and methods

A scoping review was chosen as the methodology for this review for three reasons: (1) to provide a broad overview of the field; (2) to report on the types of evidence that address and inform practice in this area; and (3) because scoping reviews are more inclusive of a diverse range of forms of evidence. We employed the Joanna Briggs Institute methodology for scoping reviews as described by Aromataris and Munn (2020), as reviewers can draw upon data from any source of evidence and research methodology. The resulting broad review is useful for bringing together evidence from disparate or heterogeneous sources.

Philosophical perspective

The JBI approach to evidence synthesis is drawn from the JBI Model of Evidence-Based Healthcare, where evidence-based care is defined as decision making that considers not only effectiveness but also the ‘real world’ feasibility, appropriateness, and meaningfulness of practices (Jordan et al. 2019). Thus, JBI takes a pragmatic stance to inclusion of the diverse forms of evidence used by decision makers. Sensitivity to the practicality and usability of synthesis findings to diverse stakeholders facilitates bridging the gap between researchers and practitioners and adapting findings to different contexts (Hannes and Lockwood 2011).

Search strategy

Together, the two scoping reviews considered sources that included foster care situations where infants, children, and youth had been exposed prenatally to substances considered harmful from a child protection perspective. For the purposes of these reviews, substances included tobacco, alcohol, marijuana, crystal methamphetamine, cocaine, opioids, and solvents if used for the purpose of intoxication. Studies were not included if they were related to environmental exposure to substances (food, lead, pollution) or medications used as prescribed by health care providers. The scoping reviews considered quantitative, qualitative, mixed methods, and economic studies for inclusion. In addition, literature reviews, policy documents, quality improvement, and program evaluation sources that met the inclusion criteria were retrieved. Gray (unpublished literature) including theses and dissertations were also included if there was not a subsequent publication.

The search strategy in the two previous scoping reviews aimed to find both published and unpublished studies between 2006 and 2016. We originally chose 2006 as the starting point for the previous reviews to capture 10 years of literature following the time when the Canadian FASD Diagnostic Guidelines were first published (Cook et al. 2006). For this integrated synthesis, we replicated and updated the search from January 2017 to February 2020. A three-step search strategy was utilized. In Stage 1, an initial limited search was undertaken to identify the text words contained in the title and abstract of relevant sources, along with the controlled language index terms used to describe the sources. In Stage 2, a second search using these identified keywords and index terms was then conducted across MEDLINE, CINAHL, and PsychINFO (see Table 1). The search for relevant gray literature included non-profit and government websites for child welfare and foster parenting. Stage 3 involved a final search of the reference lists of all retrieved publications for additional sources. Only studies published in English were considered for inclusion in this review.

Table 1.

Search strategy

Query	Limiters/Expanders
S12	S4 AND S5 AND S9
S11	S4 AND S5 AND S9
S10	S4 AND S5 AND S9
S9	S6 OR S7 OR S8
S8	SU (infan* or newborn* or baby or babies or neonatal* or perinatal* or prenatal*)
S7	AB (infan* or newborn* or baby or babies or neonatal* or perinatal* or prenatal*)
S6	TI (infan* or newborn* or baby or babies or neonatal* or perinatal* or prenatal*)
S5	(SU "Prenatal Exposure" OR SU "Fetal Alcohol Syndrome" OR prenatal substance abuse or prenatal exposure or fetal alcohol or substance related disorder* or neonatal abstinence syndrome or NAS or addiction or "drug usage" or prenatal exposure or "drug use" or "substance use" or substance abuse or "drug abuse*" or impaired parent* or cocaine related disorder* or alcohol related disorder* or opioid related disorder* or amphetamine related disorder* or "drug exposed")
S4	S1 OR S2 OR S3
S3	SU "Foster Parents" OR SU "Foster Care" OR SU "Foster Children"
S2	AB (foster* or kinship or "out of home care")
S1	TI (foster* or kinship or "out of home care")

Reference software was used to manage the list of all the retrieved citations and all duplicates were removed. If retrieved theses or dissertations were related to a peer-reviewed publication, the theses or dissertations were removed. Articles were then assessed for relevance to the review based on the information provided in the title, abstract, and descriptor/MESH terms by two independent reviewers. When relevance was not clear after this review, the full article was retrieved. Disagreement was resolved by discussion with a third reviewer. In accordance with the JBI review manual, the sources that were identified during searching for inclusion in this scoping review that were authored by one of the review authors were assessed for inclusion by other reviewers to limit bias.

The database searches identified a total of 6580 records. One hundred and eighty-two citations were duplicates and removed. The titles and abstracts for 6398 citations were screened and 212 citations were considered for full-text review. Following this step 83 sources were identified for inclusion. A further 70 sources were identified from reference list review and gray literature. A flowchart showing the number of citations is detailed in Figure 1. In total, 153 sources are included in this review. Eight of these sources were identified in the final search between January 2017 and February 2020.

Figure 1.

Flowchart of publication selection.

Data extraction

Data were extracted from papers included in the scoping review using a data extraction tool developed for this review. The data extracted included specific details about the populations, concept, context, and study methods of significance to the scoping review questions. The draft data extraction tool was iteratively modified and revised as necessary during the process of extracting data from each included study.

Data mapping

Marcellus et al. (2017) and Badry (2018) each previously developed an overview of the included material to December 2016 and summarized findings using tables and figures, which mapped the literature in the two specific developmental areas (infants and children/youth). Literature was tabulated using the following headings: type of source, area of focus/intervention, country of publication, methodology, primary aim of article, sample size and characteristics, key findings, and recommendations for practice, policy, and research.

For this integrated review, we replicated these steps. First, the two datasets were merged alphabetically. Second, data from additional sources from January 2017 to December 2020 were included. Third, the extracted data and literature maps were re-analyzed and a narrative summary and visual map of key themes were developed that represented the full developmental scope of foster care demographics from infancy through to age 19, when youth ‘age out’ of the foster care system. Extracted data are collated in Table 2.

Table 2.

Extracted data

Author (year) Country	Design	Primary focus	Aim	Sample
Adams and Bevan (2011) UK	Research (qualitative)	Supporting parents and foster care providers	Explore extent and nature of mother and baby fostering within social service agencies	N = 8 foster mothers
Adnams et al. (2007) South Africa	Research (quantitative)	Early screening, diagnosis and intervention	Assess effects of a classroom-based program for children with FASD	N = 105 children ages 9–10
Alberta Government Ministry of Human Services (2013) Canada	Educational resource	Supporting parents and foster care providers	Resource from training program for foster caregivers of infants affected by substance exposure	N/A
American Humane Association, Center for the Study of Social Policy, Child Welfare League of America, Children’s Defence Fund, and Zero to Three (2011) USA	Expert opinion – policy	Providing theoretically grounded care	Review evidence of the importance of addressing the needs of infants and toddlers	N/A
Assink et al. (2009) South Africa	Research (quantitative)	Early screening, diagnosis and intervention	Report use of occupational therapy techniques to help teachers working with children who have attention difficulties in classroom setting	N = 10 children ages 5–10
Bada et al. (2008) USA	Research (quantitative)	Early screening, diagnosis and intervention	Evaluate behavioral and adaptive outcomes for infants based on foster care living arrangement	Analytic sample N = 1,092 infants
Badry (2009) Canada	Research (mixed methods)	Early screening, diagnosis and intervention	Report development of enhanced practice standards in child welfare	N/A
Badry and Choate (2015) Canada	Peer-reviewed literature review	Intersectoral collaboration	Explore need for social work education to cover FASD related issues	N/A
Badry and Felske (2013) Canada	Research (qualitative)	Intersectoral collaboration	Present model developed from a photovoice project which considers women’s health issues in FASD prevention	N = 30 women in northern Canada.
Badry et al. (2014) Canada	Educational resource	Supporting parents and foster care providers	Describe curriculum providing online education for caregivers on FASD informed care and preferred practices	N/A
Badry and Pelech (2011) Canada	Non-peer reviewed research report	Early screening, diagnosis and intervention	Report on Alberta Children and Youth Services’ implementation of framework for addressing needs of children in care with FASD	N/A
Barth (2012) USA	Expert opinion	Supporting parents and foster care providers	Comment on current state of available evidence-informed parenting interventions for child welfare	N/A
Baskin et al. (2016) USA	Research (qualitative, grounded theory)	Supporting parents and foster care providers	Explore perspectives of clinicians on the needs of caregivers of children with FASD	N = 19 clinicians
Beckmann et al. (2010) USA	Expert opinion - policy	Supporting parents and foster care providers	Discuss areas of improvement and challenges of mandated training for parents of young children associated with child welfare system	N/A
Bernard and Dozier (2011) USA	Research (quantitative)	Supporting parents and foster care providers	Examine association between foster parent commitment to foster children and delight that they exhibit with young foster children	N = 70 foster parent-infant dyads.
Bertrand (2009) USA	Research (quantitative)	Early screening, diagnosis and intervention	Report on five RCT studies for interventions for children and caregivers	N/A
Bick and Dozier (2013) USA	Research (quantitative)	Early screening, diagnosis and intervention	Examine effectiveness of Attachment Biobehavioral Catch-up (ABC) intervention amongst foster-mother infant dyads	N = 96 foster-mother-foster infant dyads 22 months or younger
Bick et al. (2013) USA	Research (quantitative)	Supporting parents and foster care providers	Investigate relevance of oxytocin production in formation and quality of mother-infant foster care bonds	N = 41 foster mother-infant dyads
Bishop et al. (2001) USA	Research (quantitative)	Early screening, diagnosis and intervention	Learn about what the outcomes of infants involved in the child welfare system are after legislative reforms	N = 46 infants aged 0–3
Bobbitt et al. (2016) Canada	Research (quantitative)	Supporting parents and foster care providers	Determine needs of foster caregivers	N = 125 foster caregivers
Boyd (2019) USA	Research (quantitative)	Early screening, diagnosis and intervention	Examine placement experiences and outcomes of infants in foster care who had substance abuse as a removal reason in case file	N = 32,117 who spent more than 8 days in out-of-home care
Boyd et al. (2016) Scotland	Program description	Early screening, diagnosis and intervention	Explore structure and cost of mental health care of infants in foster care and the New Orleans model	N/A
British Columbia Ministry of Children and Family Development and the Vancouver Island Foster Parent Support Services Society (2009) Canada	Educational resource	Supporting parents and foster care providers	Resource from training program for foster caregivers of infants affected by substance exposure	N/A
British Columbia Ministry of Children and Family Development and the Vancouver Island Foster Parent Support Services Society (2009) Canada	Educational resource	Supporting parents and foster care providers	Manual for education and support program for foster parents who care for infants with prenatal substance exposure	N/A
British Columbia Ministry of Children and Family Development (2009) Canada	Program description	Supporting parents and foster care providers	Outline of program standard of the Key Worker and Parent Support programs	N/A
Brown et al. (2007) Canada	Research(mixed methods)	Supporting parents and foster care providers	Concept mapping of the causes of placement breakdown for foster parents caring for a child with FASD	N = 63 foster parents
Brownell et al. (2011) Canada	Research (quantitative)	Early screening, diagnosis and intervention	Determine coverage and validity of a newborn screening test	N = 37,345 infants
Bruskas (2010) USA	Expert opinion	Providing theoretically grounded care	Apply theoretical frameworks to determine social setting of foster care, impactson developmental health and needs of infants in foster care	N/A
Burd et al. (2011) US	Peer-reviewed non-research (description of a court-team based model)	Intersectoral collaboration	Describe court team-based model	N/A
Burns et al. (2020) Canada	Research (quantitative)	Early screening, diagnosis and intervention	Explore the differences in adverse outcomes between youth with FASD living in child welfare care with those living with biological or adoptive families.	N = 665
Burnside and Fuchs (2013) Canada	Research (qualitative)	Early screening, diagnosis and intervention	Explore the lived experiences of youth with FASD in transition from child welfare care to adulthood and identified two intervention points for improvement	N = 20 transition age youth (age 16–21)
Burry and Noble (2001) USA	Program description	Supporting parents and foster care providers	Describe Support and Training for Adoptive Families project worker training	N/A
Burry and Wright (2006) US	Intervention – description	Early screening, diagnosis and intervention	Examine and explore use of visitation as a child welfare intervention for children with prenatal substance exposure	N/A
Casanueva et al. (2014) USA	Research (quantitative)	Supporting parents and foster care providers	Describe extent of caregiver instability and identify the risk factors of caregiver instability	N = 1,196 and followed for 5 to 7 years
Centre on the Developing Child at Harvard University (2016) USA	Expert opinion	Providing theoretically grounded care	Apply insights gained from new brain research to how infants in the child welfare system	N/A
Chamberlain et al. (2017) Australia	Research(qualitative)	Early screening, diagnosis and intervention	Provide understanding of how families experience the diagnostic process	N = 10 foster caregivers
Chasnoff et al. (2015) USA	Research (quantitative)	Early screening, diagnosis and intervention	Describe clinical characteristics and changes in pre- and post-assessment, co-occurring disorders	N = 547 children
Child and Youth Working Group (2007) Canada	Educational resource	Supporting parents and foster care providers	Resource for caregivers and professionals providing education onunderstanding and managing behavior associated with FASD	N/A
Child Trends and Zero to Three (2013) USA	Research (quantitative)	Intersectoral collaboration	Survey of state child welfare initiatives and policies that guide work in addressing the needs of maltreated infants and toddlers	N = 46 state directors of child welfare.
Choate (2013) Canada	Expert opinion	Supporting parents and foster care providers	Provide recommendations to adapt parenting assessments for FASD parents	N/A
Cohen (2009) USA	Expert opinion – policy	Providing theoretically grounded care	Review importance of the first three years of life for development and provide guidance for infants and toddlers in foster care	N/A
Cole and Hernandez (2011) USA	Research (quantitative)	Early screening, diagnosis and intervention	Describe relationship between crisis nursery services and placement outcomes for young children leaving the child welfare system	N = 198 infants and young children
Cole (2006) USA	Research (quantitative)	Providing theoretically grounded care	Describe quality of relational environment for infants in foster care	N = 46 caregiver-infant dyads
Coles et al. (2007) USA	Research (quantitative)	Early screening, diagnosis and intervention	Test intervention using computer games to teach fire and road safety	N = 32 children ages 4–10
Cook et al. (2013) Canada	Practice guidelines	Early screening, diagnosis and intervention	Treatment Improvement Protocol to improve outcomes for individuals at risk of having FASD, or ofhaving a child with FASD	N/A
Cook et al. (2016) Canada	Systematic review	Early screening, diagnosis and intervention	Provide best practices guidelines in diagnostic procedures from available literature	N/A
Crea et al. (2008) USA	Research (quantitative)	Early screening, diagnosis and intervention	Study behavioral outcomes for adopted children with prenatal substance exposure	N = 275 children in out of home care
D'Angiulli and Sullivan (2010) Canada	Research (quantitative)	Early screening, diagnosis and intervention	Examine whether the postnatal environment provided by specialized early foster care isassociated with signs of positive developmental outcomes in infants	N = 22 infants under the age of 24 months
Davidson-Arad and Mussel (2002) Israel	Research (quantitative)	Intersectoral collaboration	Track placement of babies born to motherswho are drug-addicted	N = 120 infants
Delfabbro et al. (2009) Australia	Research (quantitative)	Supporting parents and foster care providers	Provide profile of social and familial backgrounds of infants entering foster care; develop statistical models of family background factors that predict subsequent child abuse	N = 498 infants less than two years of age
Denys et al. (2011) Canada	Research (quantitative)	Early screening, diagnosis and intervention	Report on effectiveness of Step-by-Step Program, an intervention for parents with FASD	N = 24 parents with FASD
Doris et al. (2006) USA	Research (quantitative)	Early screening, diagnosis and intervention	Confirm relationships between prenatal cocaine exposure and neonatal health outcomes	N = 76 infants tested positive for cocaine matched with 76 tested negative
Dozier et al. (2013) USA	Expert opinion – with review of literature	Early screening, diagnosis and intervention	Two intervention programs highlighted - the Attachment and Biobehavioral Catch-Up (ABC) and the New Orleans Intervention	N/A
Dozier et al. (2008) USA	Research (quantitative)	Early screening, diagnosis and intervention	Assess the effects of the Attachment and Biobehavioral Catch-up (ABC) intervention	Intervention comparison group N = 47; non-intervention non-foster care comparison group N = 48
Dozier et al. (2006) USA	Research (quantitative)	Early screening, diagnosis and intervention	Present preliminary data on effectiveness of caregiver intervention to enhance regulatory capacities from the Attachment and Bio-behavioral Catch-up intervention	N = 60, with an additional 104 non-foster children to allow comparisons.
Eiden et al. (2007) USA	Research (quantitative)	Supporting parents and foster care providers	Describe demographic and perinatal risk characteristics of infants and caregivers	N = 220 infant-mother dyads. 115 cocaine-exposed and 105 non-exposed
Enns and Taylor (2016) Canada	Research (quantitative)	Early screening, diagnosis and intervention	Identify predictors of FASD from neuro-psychological assessments	N = 180 children and adolescents
Evaluation Directorate, Government of Canada and the Public Health Agency of Canada (2014) Canada	Non-peer reviewed evaluation report	Intersectoral collaboration	Assess performance and relevance of Canada's Federal FASD initiative	N/A
First Nations Child and Family Caring Society & Paukuutit Inuit Women of Canada (2006) Canada	Gray literature (report on research project)	Intersectoral collaboration	Examine availability of FASD services and training opportunities among First Nations and Inuit communities across Canada	N/A
First Nations of Quebec and Labrador Health and Social Services (2007) Canada	Non-peer reviewed research report	Early screening, diagnosis and intervention	Provide overview of models for respite care services for individuals with FASD among Quebec First Nations communities	N/A
Frame (2002) USA	Research (quantitative)	Early screening, diagnosis and intervention	Examine outcomes of infants and toddlers placed in Foster Care prior to the Adoption and Safe Families Act of 1997	N = 1,357 infants and toddlers
Frame et al. (2000) US	Research (quantitative)	Early screening, diagnosis and intervention	Examine factors associated with infant re-entry into the foster care system	N = 88 infants aged newborn to 1 year
França et al. (2016) USA	Research (quantitative)	Intersectoral collaboration	Estimate labour costs of caring for NAS infants within the local department of children and families.	N = 6,170 infants
Fuchs et al. (2010) Canada	Research (quantitative)	Early screening, diagnosis and intervention	Describe characteristics of children in care in Manitoba, Canada	N = 1,403 children in child welfare system
Green (2007) USA	Peer-reviewed literature review	Early screening, diagnosis and intervention	Review of literature on FASD in school settings	N/A
Gregory et al. (2015) UK	Research (quantitative)	Early screening, diagnosis and intervention	Review charts of children seen in clinic to provide guidance to pediatricians	N = 72 children
Hubberstey et al. (2014) Canada	Research (mixed methods, program evaluation)	Early screening, diagnosis and intervention	Report findings from FASD Youth Outreach Program (YOP)	N = 87 youth
Humphreys and Kiraly (2011) Australia	Research (quantitative)	Supporting parents and foster care providers	Understand current practices related to family contact for infants in protective care	N = 119 infants less than one year of age in foster care
Johnson (2014) UK	Expert opinion (program description)	Intersectoral collaboration	Describe process developed to facilitate the discharge of infants with NAS to a home environment, including foster care	N = 126 infants
Kable et al. (2012) USA	Research (quantitative)	Supporting parents and foster care providers	Report effectiveness of delivering a parental education program via workshop, leaflet, or online module.	N/A
Kable et al. (2007) USA	Research (quantitative)	Early screening, diagnosis and intervention	Report the effectiveness of the Math Interactive Learning Experience	N = 561 children ages 3 to 10
Kahlberg and Buckley (2007) US	Peer-reviewed literature review	Early screening, diagnosis and intervention	Review effective interventions for FASD	N/A
Kalland et al.(2006) Finland	Research (quantitative)	Supporting parents and foster care providers	Investigate neonatal health and maternal background of children in foster care	N = 1,668 children
Kenrick (2009) USA	Research (mixed methods)	Supporting parents and foster care providers	Describe Concurrent Planning Project	N = 26 families (27 infants in total)
Koponen et al. (2020) Finland	Research (quantitative)	Early screening, diagnosis and intervention	Investigate the effect of dual exposure to substances and adverse childhood experiences on the health and development of youth with PSE	N = 615 exposed and 1787 unexposed youths
Koponen et al. (2009) Finland	Research (mixed methods)	Supporting parents and foster care providers	Examine effect of caregiving environment for children in care with FASD	N = 38 children under age 16 in care
Lange et al. (2013) Canada	Peer reviewed literature review	Early screening, diagnosis and intervention	Obtain estimates of pooled prevalence rates of FASD diagnosis in multiple countries	N/A
Larrieu et al. (2008) USA	Research (quantitative)	Supporting parents and foster care providers	Analyze and determine risk factors that are predictors of child welfare placement outcomes and permanent loss of custody	N = 141, analytic sample = 93 mothers that had a child or children placed in foster care
Leenaars et al. (2012) Canada	Research (quantitative)	Supporting parents and foster care providers	Evaluate the Coaching Families Program	N = 186 caregivers of children with FASD
Loomes et al. (2008) Canada	Research (quantitative)	Early screening, diagnosis and intervention	Evaluate intervention to improve working memory skills in children with FASD	N = 33 children age 4-11
Lloyd et al. (2019) USA	Research (qualitative)	Intersectoral collaboration	Analyze state plans for consistency with federal legislation	N = 51 plans
McCombs-Thornton (2012) USA	Research (mixed methods)	Early screening, diagnosis and intervention	Evaluate Zero to Three’s Safe Babies Court Team Project	N = 298 children compared to 511 young child welfare participants
McGee (2011) USA	Expert opinion, with review of literature, thesis	Providing theoretically grounded care	Discuss adverse effects of trauma, abuse and neglect on infant mental health and provide recommendations to promote mental health	N/A
McGlade et al. (2009) Australia	Research (quantitative)	Supporting parents and foster care providers	Compare child protection outcomes of infants of substance-using mothers with infants of non-substance using mothers	N = 119 infants of substance using mothers matchedwith N = 238 infants of non-substance using mothers
McLaughlin et al. (2011) USA	Research (quantitative)	Early screening, diagnosis and intervention	Assess effect of prenatal substance exposure on 9-year-old children	N = 332 children aged 9
McSwiney (2017) Canada	Non-peer-reviewed program description	Intersectoral collaboration	Report on Canada’s Aboriginal HeadstartProgram.	N/A
Manitoba Family Services and Consumer Affairs (2011) Canada	Practice guidelines	Intersectoral collaboration	Manual providingoverview of agency protocols	N/A
Marcellus and Nelson (2011) Canada	Program description	Intersectoral collaboration	Comment on sustainability of the Safe Babies program	N/A
Marcellus (2010) Canada	Research (qualitative)	Providing theoretically grounded care	Describe resilience based intervention model for infants in foster care	N = 11 families in 5 different communities
Marcellus (2008) Canada	Research (qualitative)	Supporting parents and foster care providers	Describe process of becoming and providing foster caregiving for infants with prenatal drug and alcohol exposure	N = 11 families
Marcellus (2004) Canada	Program description	Intersectoral collaboration	Evaluate Safe Babies project	N/A
Marcellus (2000) Canada	Program development	Supporting parents and foster care providers	Describe development of a specialized program for foster parents who care for infants with prenatal substance exposure	N/A
Markowitz (2015) USA	Research (quantitative)	Providing theoretically grounded care	Investigate duration, frequency and type of foster care and its effect on early attachment development	N = 45 infants
Mauren (2007) USA	Research (quantitative, doctoral dissertation)	Early screening, diagnosis and intervention	Explore effects of placement stability on functioning in later childhood children with FASD	N = 88 children and youth ages 6–18
Melmed (2011) USA	Expert opinion - policy	IMH (policy)	Argues for policy changes to help meet the needs of infants in foster care who have experienced maltreatment	N/A
Michaud and Temple (2013) Canada	Research (qualitative)	Supporting parents and foster care providers	Explore experiences of caregivers of children with FASD and what they believe they need to ensure positive outcomes	N = 5 mothers (foster, adoptive and biological) of children with FASD
Minnes et al.(2008) USA	Research (quantitative)	Supporting parents and foster care providers	Determine if cocaine using women who did not maintain infant custody reported more negative outcomes than those who maintained custody	N = 144 women who did not maintain custody and N = 66 women who did not
Miron et al. (2013) USA	Intervention	Providing theoretically grounded care	Highlight issues for child welfare workers to consider related to moving infants who are part of a sibling group	N/A
Miron et al. (2013) Australia	Research (qualitative)	Providing theoretically grounded care	Compare approaches to infant/biological parent visitation within the context of out-of-home care, from a human rights perspective	N/A
Moe and Slinning (2001) Norway	Research (quantitative)	Early screening, diagnosis and intervention	Follow developmental outcomes of a polysubstance-exposed infant cohort	N = 78 polysubstance exposed children and comparison group N = 58
Morrison and Mishna (2006) Canada	Research (qualitative)	Early screening, diagnosis and intervention	Reports on use of an ecological, specially tailored treatment intervention for children with FASD	N = 1 case study of 8-year old boy
Mukherjee et al. (2015) UK	Research (mixed methods)	Intersectoral collaboration	Assess the knowledge and understanding of health professionals regarding FASD	N = 505professionals
Muhajarine et al. (2014) Canada	Non-peer reviewed evaluation report	Intersectoral collaboration	Examine five FASD-related programs and make suggestions for enhancing program effectiveness	N/A
Mukherjee et al. (2013) UK	Research (mixed methods)	Supporting parents and foster care providers	Assess family impact of caring for a child with FASD	N = 66 caregivers
Nash et al. (2015) Canada	Research (quantitative)	Early screening, diagnosis and interpretation	Assess effectiveness of ALERT Program to improve executive functioning in children with FASD	N = 25 children ages 8 to 12
O’Connor et al. (2012) US	Research (quantitative)	Early screening, diagnosis and intervention	Assess effectiveness of Children’s Friendship Training (CFT) to improve social skills in children with FASD	N = 85 children ages 6 to 12
Olson et al.(2007) US	Peer-reviewed literature review	Early screening, diagnosis and intervention	Review literature focused on importance of early diagnosis and intervention	N/A
Paley and O'Connor (2011) USA	Peer-reviewed literature review	Providing theoretically grounded care	Review current literature on empirically tested interventions for children and adolescents with FASD	N/A
Paley and Auerbach(2010) US	Peer-reviewed literature review	Early screening, diagnosis and intervention	Review literature on children and youth with FASD in the child welfare and courts systems, with recommendations for practice	N/A
Pei et al. (2016) Canada	Peer-reviewed literature review	Early screening, diagnosis and intervention	Review of interventions across the lifespan	N/A
Pelech et al. (2013) Canada	Research (quantitative)	Intersectoral collaboration	Reports oneffectiveness of Promising Practices, an enhanced community of practice approach for child welfare staff and foster carers	N = 182 children in care
Pomeroy and Parrish (2013) US	Research (quantitative)	Intersectoral collaboration	Reports oneffectiveness of online FASD training for volunteers in the courts system	N = 338 court system volunteers
Popova et al. (2011) Canada	Peer reviewed literature review	Early screening, assessment and intervention	Systematic review of studies reporting on the prevalence of FASD diagnoses in the criminal justice system	N/A
Popova et al. (2014) Canada	Research (quantitative)	Early screening, assessment and intervention	Calculate prevalence of children with FASD in care in each province, and provide an estimated cost of providing care for these children	N/A
Prindle et al. (2018) USA	Research (quantitative)	Early screening, assessment and intervention	Estimate population prevalence of medically diagnosed substance exposure and neonatal withdrawal disorders and explore rates of CPS involvement during first year	N = 551,232 infants
Reid et al. (2015) Australia	Peer reviewed literature review	Early screening, assessment and intervention	Provide systematic review of evidenced based interventions for individuals with FASD across the life span	N/A
Roberts (2015) UK	Peer-reviewed non-research (editorial)	Early screening, assessment and intervention	Provide recommendations for teachers and school staff to support the learning of children with FASD	N/A
Roberts and Associates (2008) Canada	Non-peer reviewed literature review	Intersectoral collaboration	Document information available on nature, scope, economic impact, and other factors related to FASD	N/A
Rojmahamongkol et al. (2015) USA	Research (quantitative)	Early screening, assessment and intervention	Assess knowledge, attitudes and practices of pediatricians on FASD	N = 149 pediatricians
Ryan et al. (2006) USA	Research (quantitative)	Supporting parents and foster care providers	Report effectiveness of a trial combining child welfare and addictions services using a recovery coach	N = 738 caregivers
Rowbottom et al. (2010) Canada	Peer-reviewed literature review	Supporting parents and foster care providers	Review of interventions for non-biological caregivers of children with FASD	N/A
Sarkola et al. (2007) Finland	Research (quantitative)	Early screening, assessment and intervention	Determine risk profiles of children born to problematic substance using mothers	N = 526 pregnant women, 626 infants and children
Schofield and Simmonds (2011) UK	Intervention	Supporting parents and foster care providers	Explore issue of parent contact with infants subject to care proceedings	N/A
Silver and Dicker (2007) USA	Practice guidelines	Early screening, assessment and intervention	Inform professional practice of workers involved in the mental health assessment of infants in foster care	N/A
Smariga (2007) USA	Intervention	Providing theoretically grounded care	Explain why visitation is important for infants and toddlers in foster care	N/A
Smith (2012) USA	Educational resource (dissertation)	Supporting parents and foster care providers	Create training manual for prospective foster parents who plan to care for infants who have been physically abused and/or neglected	N = 15 (5 foster parents, 5 social workers, 5 foster parent coordinators)
Soh et al. (2015) USA	Research (quantitative)	Early screening, assessment and intervention	Reports oneffectiveness of the ALERT Program to improve executive functioning and increase gray matter in children with FASD	N = 65 children ages 8 to 12
Spieker et al. (2012) USA	Research (quantitative)	Early screening, assessment and intervention	Study impact of participation of parent-toddler dyads in a 10-week intervention (Promoting First Relationships)	N = 210 infants between the ages of 10 and 24 months
Silver and Dicker (2007) USA	Practice guidelines	Early screening, assessment and intervention	Inform professional practice of workers involved in the mental health assessment of infants in foster care	N/A
Stacks et al. (2011) US	Research (quantitative)	Early screening, assessment and intervention	Evaluate the language trajectories of maltreated infants over a 5-year period within placement context	N = 963 infants under the age of one with substantiated maltreatment
Stacks and Partridge (2011) US	Research (quantitative)	Early screening, assessment and intervention	Examine differences between kinship and foster placements for infants placed in out-of-home care prior to their first birthday	N = 457 infants removed from parental care between birth and first birthday
Tonmyr et al. (2011) Canada	Research (quantitative)	Providing theoretically grounded care	Examine factors associated with decisions in favour of out-of-home placement following investigations involving infants at risk of maltreatment	N = 763 infants less than one year of age
Toutain and Lejeune (2008) France	Research (quantitative)	Providing theoretically grounded care	Determine associations of FAS/FASD in infants with medial social and judiciary context	N = 28 FASD infants with FASD
Twomey et al. (2011) USA	Research (mixed methods, program evaluation)	Early screening, assessment and intervention	Describe care coordination program, the Vulnerable Infants Program of Rhode Island, to promote permanency for substance-exposed infants and provide evaluation data for thefinal four years of operation	N = 203 infants and 195 mothers
Twomey et al. (2010) USA	Research (mixed methods, program evaluation)	Early screening, assessment and intervention	Describe Vulnerable Infants Program of Rhode Island, including context, goals of the program and evaluation of outcomes of the first four years of the program	N = 203 infants, 195 mothers enrolled
Ungar et al. (2014) Canada	Research (mixed methods)	Early screening, assessment and intervention	Report findings from Pathways to Resilience Program, designed to support youth with special needs who access multiple services	N = 116 youth
Van Andel et al. (2016) Netherlands	Research (quantitative)	Early screening, assessment and intervention	Explore efficacy of Foster Family Intervention on improving quality of newly formed relationships between foster carers and infants/toddlers	N = 123 infants and toddlers
Van Andel et al. (2012) Netherlands	Program description	Early screening, assessment and intervention	Explain aims and principles underlying the Foster carer-Foster child Intervention (FFI) and describe implementation	N/A
Victor et al. (2008) USA	Research (quantitative)	Early screening, assessment and intervention	Explore association between foster care placement history and behavioral and executive functioning in children with FASD	N = 136 children
Wakelyn (2011) UK	Research (qualitative)	Providing theoretically grounded care	Follow experience of an infant or young child in care, learn about the possible reasons for under-detection of mental health and emotional difficulties	N = 1 3-month old at first visit, 13 months at last visit
Warren (2013) USA	Program description	Intersectoral collaboration	Describe benefits and tasks of being a Court Appointed Special Advocate for a baby (CASA)	N = 1 CASA worker.
Watkins et al. (2013) Australia	Peer reviewed literature review	Early screening, assessment and intervention	Systematic review on diagnosis prepared and evaluated by a panel of pediatricians.
Watts (2015) UK	Educational resource	Intersectoral collaboration	Chart progress of Scottish Government in developing training materials to address FASD knowledge gaps
Wells et al. (2013) US	Research (quantitative)	Early screening, assessment and intervention	Report on effectiveness of ALERT Program in improving executive functioning in children with FASD	N = 78 children ages 6 to 12
Werk et al. (2013) Canada	Research (quantitative)	Early screening, assessment and intervention	Use data from statistics Canada to assess prevalence of FASD diagnoses in Aboriginal children living on and off reserve	N/A
Williams et al. (2012) US	Research (quantitative)	Early screening, assessment and intervention	Evaluate effectiveness of a model program designed to screen young foster children and link them with infant mental health services	N = 151 in Phase 1 and 281 in Phase 2
Wotherspoon et al. (2009) Canada	Educational resource	Providing theoretically grounded care	Information sheet outlines the signs and appropriate responses to emotional trauma in infancy	N/A
Wotherspoon and Petrowski (2008) Canada	Educational resource	Providing theoretically grounded care	Information sheet offers information and advice on the social-emotional development of children under five for foster parents and case-workers	N/A
Wotherspoon and Gough (2008) Canada	Educational resource	Early screening, assessment and intervention	Information sheet outlines importance of assessing and responding to emotional neglect in infants and toddlers	N/A
Wotherspoon et al. (2008) Canada	Program description	Intersectoral collaboration	Describe partnership between an infant mental health consultation program and child welfare authorities	N/A
Wotherspoon and Petrowski (2008) Canada	Educational resource	Providing theoretically grounded care	Describe what young children need for healthy social and emotional development	N/A
Young et al. (2009) USA	Expert opinion – policy	Intersectoral collaboration	Assess state child welfare policies related to prevention, intervention, identification and treatment of prenatal substance exposure	N/A
Yumoto et al. (2008) USA	Research (quantitative)	Early screening, diagnosis and intervention	Test proposed models of risk for prenatally cocaine exposed children to developing difficulties	N = 337 children assessed at age 7
Zeanah et al. (2011) US	Expert opinion	Providing theoretically grounded care	Review research on attachment theory and describe interventions supporting child-parent attachment relationship	N/A
Zhou and Chivers (2010) Australia	Research (quantitative)	Early screening, diagnosis and intervention	Understand characteristics related to placement of infants in out-of-home care,	N = 5,738 infants less than one year entering care

Results

Source characteristics

Country of publication

The sources included in this review were published in the following six countries: the USA (73), Canada (54), the UK (10), Australia (8), Finland (3), the Netherlands (2), South Africa (2), Norway (2), Israel (1), and France (1). Of note, one of the Australian sources compared child welfare systems in Australia, Canada, Scotland, and the USA. This source was included as Australian as it was published through an Australian institution.

Types of source

The following types of sources were included in this review: quantitative research publications (70), program descriptions (18), qualitative research publications (12), literature reviews (12), educational resources (12), mixed methods research publications (11), expert opinions (11), practice guidelines (3), and non-peer-reviewed reports on research (2).

Quality of sources

Formal appraisal of the quality of sources is not a required component of the JBI scoping review methodology, as it is challenging to compare across different epistemological and methodological traditions (Hong and Pluye 2019). Published research included topics such as infant, child and youth mental health, adoption and foster care, health, child development, child psychology, child welfare including child abuse and neglect, developmental disability research, youth work, addictions, justice, and human behavior and emerges from the disciplines of psychology, health, medicine, science, social work, psychiatry, nursing, pediatrics, neuropsychology, neuroscience, developmental disabilities, and occupational therapy. All included gray literature sources were developed by reputable government, research, and policy organizations. Quantitative and mixed methods studies were primarily focused on early screening, diagnosis, and intervention, followed by supporting foster care providers. Qualitative approaches were used primarily to study collaboration and supporting foster care providers. Overall, research studies were appropriately designed.

Key themes

Overall, four broad themes were identified in the literature from infancy through to adolescence, within the broader construct of PSE-informed care: (1) early screening, diagnosis, and intervention; (2) supporting parents and foster care providers; (3) providing theoretically grounded care; and (4) intersectoral collaboration. It is noted that the emphasis in the majority of articles focused on early screening, diagnosis, and intervention, followed by supporting parents, intersectoral collaboration, and finally, providing theoretically grounded care. With a strong emphasis on screening, diagnosis, and intervention in the research, it is recognized that a gap exists in the literature in relation to the work involved in caring for this population including interventions with caregivers, working across systems (intersectoral collaboration), and in relation to models of best practice (theoretically grounded care). As noted above, a number of disciplines are engaged in responding to FASD, yet FASD remains somewhat underrecognized as a developmental disability. Table 3 provides a map of the themes identified in this review, the infant review, and the children and youth review. Both similarities and differences were noted in themes between the overall developmental approach and age-specific approaches, which are addressed below. Throughout the results, we employ the terminology of the sources. The term ‘children’ is employed in general for the broader group of infants, children, and youth, with specific age categories identified when done so in the sources.

Table 3.

Comparison of themes from the three analyses

Infant review	Children and youth review	Integrated review: Infant to aged 19
Identification of infants and families at risk of requiring foster care	Challenges to stability and permanency	Supporting parents and foster care providers
Child welfare program elements	Challenges to FASD-informed service provision	Early screening, diagnosis and intervention
Outcomes for infants in care and their families	Overrepresentation of Indigenous children and youth in care	Providing theoretically grounded care
Mental health promotion	Presence of concurrent mental health concerns	Intersectoral collaboration

Early screening, diagnosis, and intervention

Seventy-six of the publications focused on a component of the process of early screening, diagnosis, and intervention. In the infant literature, early screening, diagnosis, and intervention were framed primarily as identifying infants and families at risk of requiring foster care, related to the context of prenatal substance exposure but also to multiple other factors that contributed to circumstances of risk, including poverty, mental health issues, and family violence. In these sources, screening for infants and young children was typically related to identifying safety risks for infants and the need to involve families in the child welfare system, including placing infants in foster care (Brownell et al. 2011, Delfabbro et al. 2009, Eiden et al. 2007, Tonmyr et al. 2011). At this early age, the connection to substance use was focused on illicit substances such as opioids and stimulants (cocaine, crystal methamphetamine) and the development of NAS. An FASD diagnosis was usually not reported in infants and young children.

A number of interventions and programs developed specifically for this population were identified, with some publications providing evidence of effectiveness. For infants and young children, interventions were primarily focused on supporting the development of attachment within the context of dysregulation, caregiving challenges, and disruptions in relationships, including the Attachment and Biobehavioral Catch-up (ABC) intervention (Dozier et al. 2013), the Foster Family Intervention (FFI) (Van Andel et al. 2016), the New Orleans Intervention Model (Zeanah et al. 2011), and the Promoting First Relationships (PFR) intervention (Spieker et al. 2012).

In the children and youth literature, early screening, diagnosis, and intervention shifted to a focus on FASD and also concurrent mental health disorders. Early screening and diagnosis for PSE has been identified as a critical first step in the research literature for over two decades (Olson et al. 2007, Popova et al. 2016), and the importance of secondary prevention via improved diagnosis was advocated for across sources (Reid et al. 2015). Diagnosis of FASD in particular at an early age, before six or as early as possible, was widely considered a protective factor in this literature. Diagnosis at this early stage was noted to help children and youth gain access to appropriate resources, including casework planning, educational supports, family supports, counseling, and health services ( Author name [and reference] Badry et al. 2011, Child and Youth Working Group 2007, First Nations Child and Family Caring Society & Paukuutit Inuit Women of Canada 2006, Taylor et al. n.d).

Although early diagnosis is considered a gold standard practice, the findings of this review indicated that only a small percentage of children and youth with FASD in foster care were able to access diagnostic services, no matter their age. Carmichael Olson (2015) identifies that gold standard practice in FASD diagnosis includes a multi- or interdisciplinary team with specialized knowledge about FASD. There was often reporting of inadequate funding of diagnostic clinics, lack of knowledge and training in diagnosis, lack of funding for diagnostic clinics, and steep economic and time requirements necessary for comprehensive multidisciplinary diagnostic assessments (Badry et al. 2011; Cook et al. 2016, First Nations Child and Family Caring Society & Paukuutit Inuit Women of Canada 2006, Watkins et al. 2013). Other reported barriers included rural and remote geography and stigma contributing to lack of confirmation of PSE that would support a diagnosis.

Children and youth also may receive concurrent mental health and neurocognitive diagnoses. Children with FASD were noted to have a high rate of co-occurring mental health concerns, which impacted their development (Chasnoff et al. 2015). There was a need for mental health services to be tailored to their specific needs and abilities, including intensive therapy to address attachment concerns and behavioral difficulties. Service providers should recognize that children with FASD have a distinct behavior profile and may react differently to the pharmaceutical treatments normally provided mental health and neurocognitive disorders.

Interventions and programs for school-aged children were centered on improving self-regulation and emotional control, remediating problem behavior in classroom settings, supporting cognitive development, and developing skills of daily living. Interventions for self-regulation and emotional control included the ALERT Program and Neurocognitive Habilitation Therapy (Wells et al. 2012). Social skills interventions included Children’s Friendship Training (Bertrand 2009). Specific cognitive and daily living skills interventions included fire and safety skills (Coles et al. 2007), Math Interactive Learning Experience (Kable et al. 2007), Language and Literacy Training (Adnams et al. 2007), and Rehearsal Training to Improve Working memory (Loomes et al. 2008). One intervention was noted for youth, the Youth Outreach Program and was focused on mental health and preparation for transition to adulthood (Hubberstey et al. 2014).

Specific areas of focus related to youth were screening, assessment, and diagnosis within the context of correctional and justice programs (Paley et al. 2010) . Suggested improvements in the assessment process that could be made when FASD is suspected included starting evaluation at the earliest point possible when a child first entered into the child welfare system and developing opportunities for juvenile courts to evaluate and treat children and youth who may not yet have a diagnosis (Paley et al. 2010). Because of the steep prevalence of people with FASD in correctional systems (approximately 19 times higher risk for individuals with FASD to be incarcerated), screening needs to be incorporated at the earliest possible point in the criminal justice process (Popova et al. 2011).

Providing theoretically grounded care

Theories, approaches, models, and frameworks provide a logical structure for examining current evidence, studying issues, and designing interventions. Theoretical approaches were the focus of 19 articles in this review. The most frequently identified theories in these sources were strengths-based approaches, ecological approaches, culturally appropriate approaches, attachment and trauma-informed care, and developmentally appropriate care.

A key theme across age groups was the importance of child welfare workers and foster parents adopting a strengths-based approach when working with children with PSE. The concept of strengths-based child protection practice emerged over 30 years ago as an appreciative and action-oriented approach to service response that focuses on ‘positive possibilities for helping’ (Cameron and Freymond 2006, p. 348). For health and social services professionals, this approach includes a greater awareness of intergenerational, structural, historical, and political influences on parenting capacity. Paley et al. (2010) suggested that there is a need for more programs and activities to be developed, which focus on and build on children’s strengths and promote positive engagement with the community.

In addition to adopting a strengths-based approach, Morrison and Mishna (2006) argued for an ecological approach where interventions are specifically tailored to the needs of each child and should consider the environmental context. They suggested that there is often a critical need to modify the environment alongside interventions to improve functioning. Ungar et al. (2014) recommended employing an ecological conceptualization of resilience, with the need for services to be developed, which not only promote a child’s individual strengths but achieve systemic change through addressing social disadvantage. One way to do this is to draw on a social determinants of health perspective, being mindful of the effects of poverty, racism, unsafe housing, violence, victimization, and trauma, and how these can impact a child’s development (Hubberstey et al. 2014). In a review of research on interventions for people with FASD across the life span, Reid et al. (2015) concluded that ecological or holistic approaches that examine multiple factors can be more effective and have longer lasting benefits.

Although there has been a substantially increased focus in child welfare and health systems on integrating culturally appropriate perspectives into policies, programs, and values, this was not yet heavily reflected in the literature, particularly in sources focusing on infants and young children. Forty-one of the 61 sources for this age group were published in the USA and therefore reflected their demographics, where African-American and Native American children are overrepresented in foster care, compared with the overrepresentation of Indigenous children in foster care in Canada. Forty-two of the 74 articles that focused on children and youth were published in Canada, and a number of sources substantially addressed the issue of providing culturally appropriate family interventions.

Attachment based theories provided the framework for the majority of sources focused on infants and young children. The care strategies and interventions identified for this younger population were primarily focused on supporting social–emotional development (often framed as infant mental health). For older children and youth, attachment was often framed as ensuring consistent relationships. In the years since 2006, there has been a substantial increase in awareness of related concepts such as attachment, resilience, epigenetics, and trauma-informed practice. The Center on the Developing Child at Harvard University (2016) has translated and applied this science to the context of child welfare. Children’s experiences of prolonged adversity such as neglect, toxic stress, abuse, and impoverished living conditions can have long-term impacts on health and development. Interventions provided from an attachment-based perspective included sustaining the relationship of the child with their family, providing visitation, and ensuring consistent quality placements.

A key thread across many sources was the importance of applying a developmental perspective to how interventions, practices, services, and programs are oriented. Most foster care practice documents (such as guidelines, policies, and standards) are generic from a developmental perspective even though they are applied from infancy though to older adolescence. Although the literature primarily identifies the early years as a key window of opportunity for the greatest impact from early intervention, there is also more literature emerging on the importance of prevention and early intervention approaches with youth and adolescents (National Academy of Sciences, Engineering, and Medicine 2019).

Supporting parents and foster care providers

Access to adequate resources was described as a key element in keeping children in their birth families and sustaining foster care placements and the focus of 36 publications. For birth and kinship families, sources described how support was focused on prioritizing providing services to maximize the potential for infants and children to stay together (Barth 2012, Beckmann et al. 2010). These services included child care, respite, housing support, and mental health and substance use counseling, access to case management services, and education on best practices. If foster care was required, this support extended to creating opportunities to sustain relationships and address timely permanency planning (Frame 2002, Kenrick 2009, McCombs-Thornton 2012, Mauren 2007, Miron et al. 2013, Twomey et al. 2011). Inadequate resources resulted in care providers being blamed for poor parenting, stress, and leaving the foster care system.

It was noted that offering specific training on PSE, NAS, and FASD was critical and should be inclusive of the specific needs of infants through to adulthood. For example, the British Columbia Baby Steps publication (2009) offered information on the impact of substances on infants and caregiving strategies addressing concerns related to feeding and sleeping. McGee (2011) identified the need for care providers to have a solid understanding of the adverse impacts of trauma and abuse and suggested that recognizing these issues promotes foster carer responsiveness to children’s needs. Mukherjee et al. (2013) proposed the need for post-adoptive and kinship care supports to reduce caregiver isolation and concerns. Paley and Auerbach (2010) identified a lack of training for caregivers, child welfare, and youth justice staff, while Fuchs et al. (2010) strongly highlighted the need for social workers, particular those doing child welfare work to receive training on FASD to gain a solid understanding of the developmental needs of this population.

Intersectoral collaboration

Twenty-two publications focused on the imperative for groups to operate in interdisciplinary, collaborative, and cohesive ways to best serve children in care affected by PSE. Foster parents reported specific struggles with multi-professional groups that did not recognize the varying presentation of symptoms or the special needs related to PSE, NAS, and FASD (Marcellus 2010, Mukherjee et al. 2013). Moreover, publications reported a need not only for long-term, integrated planning, but also for support networks (which could include other family members, including birth families, as well as other caregivers) and broad, inclusive community-wide responses to their needs (First Nations Child and Family Caring Society & Paukuutit Inuit Women of Canada 2006, First Nations of Quebec and Labrador Health and Social Services 2007, Marcellus 2010, Mukherjee et al. 2013, Pelech et al. 2013, Rowbottom et al. 2010).

Systemic responses on the way in which services are provided were noted to be critical in relation to coordination and integration of services (Badry and Harding 2020, Badry et al. 2011, Centre on the Developing Child at Harvard University 2016, Child Trends and Zero to Three 2013, Lloyd et al. 2019). For example, Ungar et al. (2014) recommended developing coordinated multi-level services that provide supports at a variety of ecological levels and ensuring that these services are continuous rather than time-limited interventions. They suggested designing a continuum of care system that moves from least to more intensive interventions, which is also strengths-based. Fuchs et al. (2010) further pointed out the potential to create a service model that spans agencies and determinants of health, enabling a systemic response involving interventions at the early childhood stage, child care, other family supports, vocational and employment resources, independent living supports, and affordable housing. They urged that this scale of delivery service integration creates social inclusion could reduce the demand on burdened child welfare systems while simultaneously opening better access to the range of suitable services.

From a developmental perspective, intersectoral collaboration in relation to the infant and young child populations involved connection to perinatal, public health, early childhood, and pediatric partners (Popova et al. 2014). Schools systems were identified as key partners across most of the time spent by children in foster care (Assink et al. 2009, Badry et al. 2014, Baskin et al. 2016, Brown et al. 2007, Chasnoff et al. 2015, Green 2007, Paley and Auerbach 2010, Roberts 2015). For older children and youth, systemic responses also included justice systems (Burnside and Fuchs 2013, Fuchs et al. 2010, Popova et al. 2011).

Discussion

The primary research questions serve as a guide to this discussion with a focus on the characteristics of interventions and programs to support infants, children, and youth, to promote the satisfaction and retention of a caregivers such as foster and kinship care providers and to identify gaps for further intervention and research and policy development for this population.

Overall, our findings reflected findings from other scoping reviews of foster family care interventions and supports for children with FASD (Bergstrom et al. 2020, Bertrand 2009, Gypen et al. 2017, Peadon et al. 2009). In addition, they reflected the compounding disadvantage from PSE, the social conditions from which PSE emerges, and the impact of foster care and disrupted family relationships. Evidence-informed practice, research, and policy in response to PSE, while emerging, remains fragmented, particularly when it relates to the delivery of point of care child welfare services across developmental stages. Emerging literature on stigma also is relevant in this discussion as FASD and other PSE-related diagnoses are not well understood as a disability, nor are they as well positioned for service delivery in contrast to other developmental disabilities (Choate et al. 2019; Corrigan et al. 2018).

Developing a continuum of early interventions and supportive programs

Overall, the literature showed that early intervention and support can improve the course of development in both the short and long term (D'Angiulli and Sullivan, 2010, Dozier et al. 2008, Hubberstey et al. 2014; Kalberg and Buckley 2007, Nash et al. 2015, Olson et al. 2007). Infants, children, and youth with PSE are significantly more likely to be in out of home care than the general population (Brownell et al. 2011, Meinhofer et al. 2020), and as such, it is critical to recognize that early screening, diagnosis, and intervention are the crucial elements of sound care. Even though research has pointed to the need for immediate appropriate service provision and interventions after a PSE diagnosis has been made, many children living in foster care receive inadequate or fragmented services that are not PSE informed. Olson and Montague (2011) identified the need for services to be provided from a neurodevelopmental perspective or viewpoint that recognizes that this population will require specific interventions. Earlier diagnoses tend to result in increased tailored supports (Petrenko 2015).

The child protection system has substantial challenges and issues such as confidentiality, privacy, legislation, and overburdened systems, and different professional/disciplinary perspectives and worldviews exist. Any child in this system inevitably experiences multiple transitions and disruptions over time in relation to worker turnover, placement changes, school movement, and continuity in relationships to their birth families, and these changes take a developmental toll that often goes unrecognized. The need exists to consider a life span or life course perspective that addresses the impact of cumulative experiences of change on a child and the long-term consequences of these experiences. Pragmatically speaking, adults who are of legal age who transition out of the child welfare system are rarely ready to do so as limited adult support programs exist. Developmentally, these individuals can lag behind their peers and need ongoing disability supports over their life span in areas such as health care, daily living and social skills, learning, memory, emotional regulation, and communication (Cook et al. 2016). The need for services that support youth in adolescence and in the transition to adulthood is crucial (Burnside and Fuchs 2013) alongside adaptive educational environments that accommodate around the challenges of executive functioning for children and youth with FASD and other PSE-related developmental and intellectual disabilities (Green 2007).

Supporting foster care providers and parents

A key recommendation in the literature was facilitating and sustaining early, stable, and permanent placements for children with PSE. Children who are placed with foster families early and who have fewer placements have better outcomes in later childhood (Pelech et al. 2013, Badry 2020). Thus, supporting and retaining skilled foster care providers is a critical component of an integrated and responsive child welfare system. While caseworkers consider permanency planning as a priority for this population, it is not always easy to recruit and retain permanent placements for children with PSE (Burnside and Fuchs 2013, Marcellus 2010). Placement stability was proposed as particularly important during infancy and adolescence, with consistency in care being critical to helping infants develop quality attachment relationships early in life and helping youth function and adapt as they transition out of care (Hanlon-Dearman et al. 2015).

Caregivers of infants, children, and youth with PSE benefit from having a strong understanding of health and developmental implications, alongside knowledge of available supports within the community. Child welfare agencies should make special efforts to recruit those interested in fostering a child with PSE and should provide adequate information to potential care providers to ensure that their expectations are realistic. Foster care providers should also be provided with specialized age-specific additional support, which should include education on how to adapt parenting skills and providing links with support and advocacy groups (Bobbitt et al. 2016). Providing respite care and appropriate community resources and activities were also key recommendations to support care providers. Adopting these measures in child welfare agencies could help to prevent placement breakdown, promote stability, and improve outcomes for children and families (Brown et al. 2007, Casanueva et al. 2014).

Gaps in practice, policy, and research

The majority of published research focused on the needs and experiences of infants, young children, and school-aged children, with fewer articles addressing practice recommendations for youth and emerging adults in foster care. A key gap noted is the need for research and program development for this population, as they become increasingly vulnerable approaching the age of majority. A further recommendation was the importance of beginning transition planning into adulthood early and involving youth and their families collaboratively in this process, starting before or around age 16 or sooner (Badry and Harding 2020, Child and Youth Working Group 2007, Manitoba Family Services and Consumer Affairs 2011). These recommendations align with a systematic review of the literature on FASD interventions across the life span conducted by Pei et al. (2012), who reported similar findings and argued that there is a need for more research and program development for youth with FASD due to the increased risk at this time for secondary effects of an FASD diagnosis, including trouble with the law, victimization and sexual exploitation, and drug and alcohol concerns.

Placement in foster care is considered a sentinel event for children, acting as a far-reaching signature on the lives of children with long-term physical, emotional, social, and developmental implications (Gypen et al. 2017, Zlotnick et al. 2012). We began this review with a developmental approach, knowing that ages and stages would most likely underpin how interventions were conceptualized and operationalized. Reflecting on the complex circumstances of many families that arose in the literature, we propose that life course theories, for example Elder’s paradigm, as a form of developmental theory with broader consideration of the influence of socio-structural contexts over time, hold potential utility as frameworks for informing intervention and policy development for this population (Elder 1998). Nurius et al. (2015) advance Elder’s paradigm and indicate that using a life course theory serves to amplify the need to pay attention to early life experiences and conditions as these experiences align closely with later health and social outcomes. Further, Nurius et al. discuss the challenge of ‘stacked disadvantage’ (p. 574), which can be aptly applied to infants, children, youth and young adults with PSE.

Although this scoping review examined the impact of PSE, a distinct focus on FASD emerged in particular for children and youth, a topic that has not yet gained the expected traction that is required for effective responses in the child protection system. Strong evidence exists regarding the developmental and life challenges for this population, yet systemic responses consistently fall short due to a lack of existing policy and program infrastructure. Brownell et al. (2011) indicated that individuals with FASD have higher service utilization in health, education, and social services/child welfare system and further note that children with FASD were 10 times more likely in out-of-home care than those in the general population and often have ongoing protection and support needs. Every involvement with children and their families and alternate care providers is a window of opportunity for a response that makes a difference. Therefore, every professional involved in a child’s life has a responsibility to promote positive developmental outcomes. Employing a less functional/task-driven agenda for a more authentic, relational approach between and across the caseworkers responsible for the child’s best interests is a shift that is long overdue (Murphy et al. 2013).

In a recent study comparing outcomes of children and youth with FASD through data gathered on the Canada National FASD Database on 665 youth and adolescents with a confirmed FASD diagnosis, it was noted youth with FASD in care experienced higher rates of sexual/physical abuse in contrast to those not living in care (Burns et al. 2020). Further, these youth also had higher rates of legal problems as both offender and victim in contrast to those not living in care. Of note is that 39% of individuals also with FASD living in care (21.7%) and those living with biological family (27.3%) experienced suicidal ideation and attempts. This research implies that the experiences of youth with FASD in care are critical to examine given the rates of sexual/physical abuse the high risk of suicidal behavior among this population.

The need to keep the cumulative impact of events of early life experiences, including adverse childhood experiences (ACEs), in mind while providing service to this population is essential. In a seminal, online webinar held on March 18, 2021 in Canada through the University of British Columbia, Continuing Education, a research-based presentation by the FASD Changemakers (Lutke et al. 2021) identified challenges with ‘Adverse Continuing Experiences’ into adulthood. The introduction of this term serves to underscore that FASD is a lifelong disability with many distinct challenges. It is recognized that many children with FASD have ACEs and new research emerging from adults with FASD in collaboration with researchers suggests that these experiences continue into adulthood. The need exists to mediate these experiences through FASD informed care consistently across all environments. Further, the application of an FASD lens suggests that a basic understanding of the impact of PSE is required, that the disability is understood, that a strengths-based approach is utilized, and that the individual is effectively supported. Recognizing the inherent struggles of FASD as a disabling condition places a responsibility on both professionals and the caregiving network to provide effective care and support.

Limitations

This review primarily included North American sources available in English. As a result, this review may not encompass some potentially applicable publications reflecting wider global context. The review was also limited to a 14-year period of time, three key databases, and selected key child welfare websites. Some potentially relevant publications may not have been identified with these search strategies.

Conclusion

The aim of this scoping review was to identify and describe literature that identifies a range of interventions to support infants, children, and youth in foster care with Prenatal Substance Exposure (PSE) and their care providers. Our goal was to map the available interventions that support this population in particular living with a disabling condition that has a major impact over a life time. Across developmental stages, early screening, diagnosis, and interventions are critical for optimizing conditions for healthy development and stability. However, research on best practices for this population remains limited, particularly for youth approaching transition out of care. There are also still limited evidence-informed interventions and programs for foster and kinship care providers who care for children with PSE. We recognize that there are distinct structural barriers for children in foster care with PSE who have a lifetime of cumulative disadvantages including mental health problems and learning difficulties. Thus, responses should be intersectoral, as opposed to fragmented and siloed approaches that are solely child welfare focused.

Overall the need to provide PSE-informed foster care across infancy, childhood, and into adulthood exists, yet consistent infrastructure in both policy and programs is a challenge in Canada, the USA, and globally. This scoping review highlights the need for a more intentional approach to practice, education, and research on PSE and foster care at the critical intersections of child protection, education, justice, health, and social care. The disabilities associated with PSE have lifelong developmental implications and the need for evidence-based interventions and effective child welfare responses resounds in the literature. It is almost 50 years since the first publications on NAS and FASD in North American literature (Finnegan et al. 1975, Jones and Smith 1973) and time for a universal model of service delivery from infancy to adulthood.Finally, major gaps exist in the ways in which FASD is understood as a disability, largely due to the stigma associated with the cause – alcohol use in pregnancy. The Canada FASD Research Network (2020) recognizes FASD as the ‘leading cause of neurodevelopmental disability in Canada, affecting 4% of the population…[with an] economic impact [in] health, justice, social services and education…at 9.7 billion’ (https://canfasd.ca/national-fasd-strategy/). FASD remains a stigmatized disability and it is evident through this scoping review that greater attention is required in the areas of supporting parents and caregivers, in forging greater interdisciplinary collaborations and in developing models of excellence in responding to the care needs of this population. FASD is a developmental disability that is rarely talked about in disability venues such as conferences and publications. It is time to include FASD in dialogues on disability globally.

Funding Statement

This work was supported by PolicyWise for Children & Families under Grant No. 10021194, British Columbia Ministry of Children and Family Development under Grant No. 3457, and a Canada FASD Partnership Grant.

Disclosure statement

No potential conflict of interest was reported by the authors.