Utilization of health and supportive services amongst children with prenatal opioid exposure: a mixed methods and community-initiated analysis

Abstract

Background

Research suggests long-term developmental implications of prenatal opioid exposure (POE) that may contribute to healthcare and educational service utilization patterns, such as lower utilization of preventative healthcare services, higher utilization of emergency department and inpatient services, and higher utilization of supportive educational services. However, research on how families navigate these services, including challenges and benefits, is limited.

Methods

Parents and caregivers of children with POE worked with the study team to design, collect, and descriptively analyze mixed-method data. Data were collected through a survey (n = 148) and two focus groups (n = 15) from a convenience sample, 75% in West Virginia and Massachusetts.

Results

The vast majority of children in the sample received some type of supportive service, with Early Intervention (80%) and/or Individualized Education Plans (39%) being the most commonly reported. Additionally, children commonly received outpatient services such as occupational therapy (35%) or mental health counseling (31%), among others. Caregivers expressed navigating significant challenges in trying to access services for their children with POE, from a fractured and complex system to providers who do not see their child’s struggles or believe they are connected to POE. Utilization patterns did not vary between children with just POE and children with exposures to additional substances prenatally.

Conclusions

Based on families’ reported experiences, investments in professional development for pediatricians and educators, a clinical understanding of the long-term implications of POE, best practices beyond the NICU, more integrated screening and services, and greater access to mental health services are top priorities.

Supplementary Information

The online version contains supplementary material available at 10.1186/s12913-026-14887-3.

Significance

What is already known on this subject?

What this study adds?

Prenatal opioid exposure is associated with long-term developmental implications and distinct healthcare and educational service utilization patterns. Existing research highlights contradictions: (1) These children are more likely to use hospital services but are not more likely to be diagnosed with chronic pediatric conditions, and (2) They may have less use of well-child visits but more use of school-based services.

An investigation of health and education service utilization among children with prenatal opioid exposure, including their diagnoses, caregiver perspectives on the benefits and challenges of the services available, and perspectives on what services are still needed.

Supplementary Information

The online version contains supplementary material available at 10.1186/s12913-026-14887-3.

Introduction

Neonatal abstinence syndrome (NAS) is a group of conditions that babies can experience when withdrawing from certain substances in the womb, especially opioids [1], which can be characterized by irritability, difficulty feeding, difficulty sleeping, and seizures in infants [1]. From 2004 to 2014, the incidence of NAS increased more than fivefold among births covered by Medicaid, and the cost of caring for these infants during and after birth increased to $462 million in 2014 [2]. Prenatal opioid exposure (POE) does not always lead to a NAS diagnosis, and the present study focuses on all POE [1]. Research on the long-term implications of POE is emerging [3], but existing research suggests that children with POE may experience a range of longer-term developmental challenges, including deficits in cognitive, psychomotor, visual, and language development [3–9]. Furthermore, POE has consistently been linked to behavioral concerns, including higher internalizing and externalizing symptoms as well as attention problems [5]. Specifically, POE, whether through substance use or opioid maintenance treatment, is associated with hyperactivity, impulsivity, and other symptoms of ADHD with potentially increased risk of symptoms after preschool [10, 11]. A recent systematic review of 79 studies found POE was associated with worse cognitive and motor development in children [3].

Research is limited on how families raising children with POE navigate these challenges and what services they utilize. Research beyond infancy is even further limited [12]. Examinations of the healthcare utilization of these children are conflicting [13–15] and do not include the myriad of other systems these families may be navigating, but findings reflect higher utilization amongst children with POE. Multiple studies have found significantly higher outpatient, inpatient, and emergency department visits and spending for prenatally exposed children [12, 14, 16]. An investigation utilizing Pennsylvania Medicaid claims data found that children with POE are less likely to have their recommended well-visits and not more likely to be diagnosed with pediatric complex chronic conditions [13]. A population-based cohort study in Canada found that children with greater than 30 days of POE, especially those with mothers receiving medications for opioid use disorder (MOUD) or illicit opioids, were less likely to attend well-child visits [17]. Children and families who miss well-child visits may miss out on beneficial components of early and preventative care (e.g., vaccinations, identification and management of acute and chronic illnesses, education for parents, and screening and management of developmental delays) and be at risk for increased emergency department use and hospitalization [18–21]. Focusing on mental health services, in particular, research suggests service utilization may vary between birth and foster families [22]. One investigation found that stigma contributes to ambivalence regarding engaging in Early Intervention services for their children among mothers in recovery from opioid use disorders [23]. Extant research on education outcomes and utilization suggests that children with a history of NAS experience a progressive deficit in test scores compared to their peers, have an increased risk of not meeting minimum educational standards, and are more likely to be referred for disability evaluation, meet criteria for a disability, and require classroom therapies or services [5, 24]. Overall, literature on service needs amongst children with POE is emerging and limited. Few studies in the existing literature integrate lived experiences or explore the “why” of disparities in service utilization, which is essential to improving access to and engagement with health services.

The present study aims to address the limitations in the current literature by including toddler, preschool, and school-age children, interviewing parents to contextualize administrative records, and broadening the scope of data to include a wide range of health and education services. The present study was designed in partnership with families raising children with POE. It seeks to describe the multitude of services these families are navigating and their experiences with these services, including which services are most helpful and which services they are still seeking.

Methods

This study was community-initiated. To The Moon And Back is a nonprofit that has served children and families with POE since 2017 in Massachusetts and West Virginia. To The Moon And Back contacted Child Trends to request that we collect data from the families they are serving. We used a mixed methods approach, specifically a convergent parallel mixed-methods design, to give equal priority to the quantitative and qualitative data and to avoid one informing or constraining the other [25]. We collected survey and focus group data from and in collaboration with families in West Virginia and Massachusetts. The study aimed to address three research questions: (1) What are the developmental implications of POE, both positive and negative? (2) Do the developmental outcomes associated with POE vary by type of opioid or by polysubstance use, while controlling for adverse childhood experiences (ACEs)? (3) Which services are helpful, and what services do they wish existed? This paper focuses on the results of the third research question. The study recruited families from community-based organizations for both a survey and focus groups for descriptive and statistical analyses.

The survey provided mostly quantitative and some qualitative data from a larger sample that made it feasible to understand service utilization and experiences (research question 3). The quantitative data from the survey also made it feasible to test whether service utilization varied by type of opioid exposure. The focus groups with families provided qualitative data that added considerable depth to our understanding of service utilization and how families understand, describe, and navigate them [25].

Sample

Child Trends partnered with To The Moon And Back in all parts of this research to ensure those with lived expertise informed the research questions, the modes of data collection, and data analysis. For example, we learned families found the new term for NAS, NOWS, confusing, so we used NAS in the results. Child Trends had no relationship with the participating families outside of To The Moon And Back.

Online survey sampling and analysis

Researchers worked with To The Moon And Back to develop the survey, test the questions with parents of children with POE, and distribute the survey to a convenience sample via their website and partners in West Virginia and Massachusetts. To The Moon And Back distributed the survey through their listserv, their social media platforms, and their partner organizations, including Early Intervention, mental health providers, foster and adoptive support groups, and support groups for parents in recovery. Caregivers of children with POE in any state were eligible to participate, and the survey was self-administered. Survey domains included prenatal substance exposures (type, timing, frequency), post-delivery infant care, child welfare involvement, ACEs) clinical diagnoses, challenging behaviors, strengths, and measures of health and education service utilization across roughly 65 questions, depending on survey branching. Though self-report of ACEs information is not ideal, past research has found alignment between parent and child reports and the high likelihood of child welfare involvement for these families could increase the odds of the survey collecting accurate information [26]. The present study focuses on service utilization. Surveys were collected and managed using the secure, web-based Research Electronic Data Capture (REDCap) tool hosted at Child Trends [27, 28]. The survey was open from February through May 2022. Families with multiple eligible children were asked to complete a survey for each child. Care was taken to make the survey as anonymous as possible. In order to connect multiple children to one caregiver, the first and last initials of parent and child, as well as both of their birthdays, were collected in the survey. Caregivers were asked to provide an e-mail address only if they were interested in the incentive. Surveys were collected from 215 families, and 67 were dropped from the analytic sample due to being ineligible or incomplete, leaving 148 surveys for the analytical sample.

Descriptive and statistical analyses were conducted in STATA [29]. T-tests were conducted to determine if there was a significant difference in the mean child age between those who positively endorsed services utilization and those who did not. Logistic and ordered logistic regressions were conducted to test whether service utilization differed between children with prenatal exposure to only opioids compared to children with prenatal polysubstance exposure, as well as between those who were exposed to prescribed opioids and those who were exposed to only illicit opioids (e.g., heroin) [30]. The regression models controlled for ACE exposure, age, state, and race/ethnicity. Open-text survey responses were analyzed using frequentist and inductive qualitative data analysis techniques. Open-text survey responses were analyzed using frequentist and inductive qualitative data analysis techniques.

Focus group sampling and analysis

Researchers collaborated with To The Moon And Back to develop the focus group protocol [31], design the sampling frame, and recruit participants. Families were recruited for the focus groups through the same channels and partnerships through which the survey was distributed. Participants were recruited through a combination of purposive, convenience, and snowball sampling to try and ensure participation by a mix of foster and birth families raising children with POE. To The Moon And Back posted study recruitment information on their website, shared it with county child welfare agencies to distribute, contacted specific families with which they had previously worked, and asked interested families to invite others that may be eligible and interested. Participants were recruited primarily online or through face-to-face conversations between To The Moon And Back staff or partners and parents and caregivers. Focus groups were co-facilitated by one of the authors with prior focus group facilitation training and experience (Wilkinson, Ph.D., female) and a parent raising children with POE to maximize the comfort of the participants in the group. The co-facilitator had relationships with some of the participants prior to the study, and the author facilitator had no relationships with the participants prior to the study. The participants were informed of the goals of the study prior to the focus groups beginning. The methodological orientation for the focus groups was content analysis. The focus group protocol (Appendix A) had five questions broadly assessing (1) positive and negative experiences raising children with POE; (2) which services the children are using; (3) which services families found helpful; (4) which services they wish existed; and (5) what they wish providers knew about their child. The present study does not include results from the first focus group question. Two participants were unable to attend the focus group due to childcare disruptions and illness. The focus groups were conducted via Microsoft Teams, a video conference platform, and lasted 60 to 90 min. The focus groups were conducted in the evening, so participants were primarily at home. Field notes were taken during and after the interview, during a debrief between the facilitators. Two focus groups, one in Massachusetts (9 participants) and one in West Virginia (6 participants), had a total of 15 participants. Focus groups were automatically transcribed and video recorded.

Transcriptions and recordings were analyzed using frequentist and inductive methods with a priori codes based on the protocol and probes and inductive codes as the analysis progressed. One coder coded the data, and the results were checked by the co-facilitator. Discrepancies in coding were minimal and addressed through discussion. There were minimal code variations between the focus groups, an indication of saturation. This also enabled the focus group data to be analyzed together rather than by state.

Ethics statement

This research was conducted following the protocol reviewed and approved by the Child Trends Institutional Review Board. The survey took an estimated 15 to 20 min to complete, and participants were entered into a raffle for a $50 gift card for their time. Focus group participants received a $15 Amazon gift card as an incentive.

Results

Sample characteristics

The characteristics of the survey sample are included in Table 1. Most survey respondents reside in Massachusetts (64%), followed by West Virginia (11%), with an additional 21 states represented. Caregivers were primarily White Non-Hispanic (93%), with nearly half holding undergraduate or graduate degrees (48%). Children had a mean age of 6 years old (range from 0 to 24, SD = 4.59) and commonly resided with adoptive parents (66%), relatives (15%), or non-relative foster parents (14%). Birth parents were eligible but rare in the sample (4%). In the focus groups, the mean age among children was seven years old, and the caregivers were primarily adopted and foster parents.

Table 1.

Sample characteristics, n = 148

	n	%
State, n = 148
Massachusetts	94	64%
West Virginia	17	11%
Not listed	37	25%
Current Caregiver, n = 146
Adoptive parent(s)	98	66%
Relative(s)	22	15%
Non-Relative foster parent(s)	20	14%
Biological parent(s)	6	4%
Missing	2	1%
Caregiver Education Level, n = 148
High School or GED	12	8%
Some College	25	17%
Certification, Vocational or Technical School Training	16	11%
Associate Degree	18	12%
Undergraduate Degree	35	24%
Graduate Degree	42	28%
Caregiver Race/Ethnicity, n=148a
White Non-Hispanic	138	93%
Hispanic	5	3%
Child Race/Ethnicity, n=138a
White Non-Hispanic	103	70%
Multiracial Non-Hispanic	34	23%
Black Non-Hispanic	7	5%
	Mean	SD
Caregiver Age, n = 148	44.84	9.25
Child Age, n = 147	5.65	4.59

^a Totals do not add to 100%. Additional race/ethnicity categories were suppressed due to small sample size

In the survey sample, illicit opioids (e.g., heroin) were the most commonly reported opioid exposure (74%), but roughly half of the sample (49%) had exposure to more than one type of opioid. As shown in Table 2, polysubstance exposure was common (85%) amongst the sample, and respondents were exposed to an average of 4.12 (SD = 1.47) substances. Additionally, 70% of the sample had experienced removal from the home at least once, and 56% of the sample experienced at least one ACE. Overall, respondents were exposed to an average of 1.63 ACEs (SD = 2.01; Table 3). A large majority of the sample was diagnosed with NAS (80%) and spent time in the neonatal intensive care unit (67%). Developmental diagnoses (e.g., delays, disabilities) were also common amongst the sample (74%) displayed in Table 4.

Table 2.

Prenatal exposures and neonatal treatment, n = 148

	n/Mean	%/SD
POEs
Illicit Opioids	110	74%
Medication Assisted Treatment	64	43%
Non-prescribed opioids	50	34%
Prescribed opioids	17	11%
Don’t know	16	11%
Prenatal Exposure to Other Substances
Yes	126	85%
No	-	< 5%
Don’t know	21	14%
Other Substance Exposures
Nicotine/cigarettes, n = 100	94	94%
Marijuana, n = 83	74	89%
Alcohol, n = 71	54	76%
Methamphetamine, n = 71	47	66%
Tranquilizers or sedatives, n = 52	37	71%
Other stimulants, n = 51	31	61%
Hallucinogens, n = 34	8	24%
Mean number of substances exposed, n = 106	4.12	1.47
Diagnosed with Neonatal Abstinence Syndrome (NAS)
Yes	119	80%
No	15	10%
Don’t know	14	9%
Medication to Treat NAS Symptoms, n = 119
None	16	13%
Morphine	64	54%
Methadone	18	15%
Phenobarbital	18	15%
Don’t know	23	19%

Table 3.

Adverse childhood experiences (ACEs)

	n	%
ACEs, n=142a
No adverse experiences	62	44%
Resided with adult who used alcohol or drugs	56	39%
Resided with adult who had mental illness or attempted suicide	43	30%
Parents separated or divorced	40	28%
Resided with adult who was sentenced to/served time in prison or jail	35	25%
Physical abuse	27	19%
Verbal or emotional abuse	24	17%
Don’t know	8	6%
Ever removed from the home, n = 146	102	70%
	Mean	SD
Mean number of ACEs, n = 140	1.63	2.01
Mean number of removals, n = 102	1.33	0.65

^a Sexual abuse ACE is suppressed due to small sample size

Table 4.

Developmental diagnoses and delays

	n	%
Developmental Diagnoses, n = 142
None	26	18%
Developmental delay	89	63%
Behavioral health condition	64	45%
Specific Learning Issues	40	28%
Physical disability	26	18%
Neurological disability	14	10%
Intellectual disability	-	< 5%
Don’t know	-	< 5%
Multiple developmental diagnoses, n = 142	70	49%
Developmental Delays, n = 86
Language	61	71%
Physical	51	59%
Social and emotion	50	58%
Cognitive	42	49%
Don’t know	-	< 5%
Multiple development delays, n = 86	62	72%
	Mean	SD
Number of developmental diagnoses, n = 142	1.65	1.35
Number of developmental delays, n = 86	2.37	1.14

Health and education service utilization

As shown in Table 5, most of the sample (80%) received Early Intervention (EI) services. While Individualized Education Plan (IEP), 504, and Children’s Behavioral Health Initiative (CBHI) services demonstrated lower utilization. There were no significant differences in service utilization among those with polysubstance exposure compared to opioid-only exposure (p > 0.05). Further, there were no significant differences in service utilization between those with exposure to prescribed opioids (for pain and/or medications for opioid use disorder) compared to those with illicit-only exposure (p > 0.05). ACEs did not have a significant effect on the relationship between POE and service utilization.

Table 5.

Services received

	n	%
Services Received, n = 141
None	12	9%
Early Intervention	113	80%
Individualized Education Plan (IEP)	55	39%
Children’s Behavioral Health Initiative (CBHI)	35	25%
Integrated Preschool	31	22%
504 Plan	13	9%
Don’t Know	-	< 5%
Outpatient Services Received, n = 127
None	31	24%
Occupational Therapy	44	35%
Mental Health Counseling	40	31%
Speech-Language Therapy	31	24%
Physical Therapy	23	18%
Developmental Pediatrician	20	16%
Psychiatry	15	12%
Behavioral/ABA	12	9%
Other medical care	44	35%
Don’t know	-	< 5%
Pediatrician Understands Needs, n = 128
No	55	43%
Yes	73	57%
CBHI Services, n = 32
In-Home Therapy	25	78%
In-Home Behavioral Services	17	53%
Intensive Care Coordination	13	41%
Therapeutic Monitor	13	41%
Family Partner	10	31%
Don’t know	-	< 10%

In the focus groups, when asked about the services they and their children were using, parents first mentioned how hard it was to know which services to seek, given how little is known about children with NAS. One caregiver stated, “I think the best word to describe the way I spend my life is terrified. Um, I feel like I feel like our generation of kids are kind of the guinea pigs of this epidemic.” Another parent expanded on this point by adding that parents have to strongly advocate for their children when trying to access services, “if this is sort of the guinea pig generation of kids, we are the guinea pig generation of parents that have to almost kind of go over and above in sort of the advocating and educating and the explaining.”

When asked which services were most helpful, parents reported the most satisfaction with Early Intervention in both the focus group and the survey: “Early Intervention was a blessing… I’m very thankful they were able to explain things and kind of point me in the right direction. Other parents echoed these sentiments, “Lots of material was given to us,” and “early intervention was amazing for us for all five kids.” Parents said treatment providers specializing in children with prenatal substance exposure were terrific, though they can have long wait lists. One parent shared the power of these providers. Her child was having gastrointestinal (GI) issues, and the first physician treated the child for constipation, which caused the child to soil themselves frequently at school. When the parent found a clinic with a collaborative care team that understood her child’s GI concern in the context of their POE, it was appropriately treated, and the child “could go back to being a kid.” Finally, parents found that extracurriculars were helpful if they built strength and spatial awareness (e.g., karate, gymnastics, horseback riding) or decreased sensory sensitivities (e.g., swimming).

As for unhelpful services, three loomed large in the comments from parents in the focus groups: pediatricians, schools, and child welfare. One caregiver summarized what many were saying about pediatricians in the focus group with: “I just have never had good resources or perspective or ideas, suggestions or referrals provided through the pediatrician community.” Another caregiver shared their disappointment with how they were treated by their child’s school: “…It’s supposed to be a village, you know, working together to help these kids. And yet, I felt so isolated and so put down. By particularly by the schools… I got so much pushback.” Concerns with child welfare centered around services children have access to while in foster care that become much harder to access after adoption. When parents were discussing unhelpful services, they quickly stressed the need for professional development; “And these schools are going to be seeing a lot more of these kids. They need to get on the wagon now.” One parent in a focus group told a story highlighting the need for professional development. She tried to educate her child’s childcare providers about how to interact with her child and gave them books to read, but she navigated a terrible experience.

I had multiple conversations about she is not your typical child. And so I’m sitting at work one day and I get a phone call from one of the workers in her room and she proceeds to tell me that she had just slapped my 3 year old daughter across the face

In the survey, we asked parents if they felt their child’s pediatrician had a good understanding of their child’s needs as it relates to their POE. While there were a couple of positive comments, the majority highlighted challenges. The challenges fell into three themes: First, parents felt pediatricians lacked the knowledge and training to treat children with POE; “He has no clue. He doesn’t see the problems I see. I also have a NAS now 12 year old who has been with our pediatrician since birth. Pediatrician doesn’t connect current problems with past exposure.” Second, many parents said they struggle with their pediatricians not due to a lack of knowledge but due to differences in beliefs; “We are constantly told by multiple providers that NAS does not contribute to any of our child’s struggles.” Third, some parents felt judged by the pediatricians; “They are discriminatory towards my choices as a parent.”

Finally, the survey asked parents if there are any services that they feel their child could benefit from but that they are not receiving. Overwhelmingly, the responses centered on mental health therapy. “Applied for (mental health supports), was denied, despite several CBAT (community-based acute residential) placements and two partial hospitalizations and many calls to crisis.”

Early intervention

Consistent with findings that physical and language developmental delays were common amongst the survey sample, children mostly received occupational, physical, and speech therapy services through EI as shown in Table 6. Most children received services at least weekly for over a year, reflecting a relatively high intensity of services. When asked about their transition from Early Intervention, about 42% of the sample reported transitioning from EI to receiving services at school through an IEP, while 35% reported their child graduated from EI. Roughly one in five parents said they received minimal support during the transition; “EI did not identify a need for services. They didn’t see the extreme behaviors and didn’t seem to believe me.” More than 1 in 10 families in the survey continued to access outpatient services after EI, sometimes in addition to school-based services. A few families in the survey and focus groups articulated how the COVID-19 pandemic complicated things; “He no longer qualified at one year. We developed concerns again around age 2.5-3, but then COVID happened, so intervention was delayed until this year (kindergarten, age 5).”

Table 6.

Early intervention (EI) services

	n	%
Evaluated for EI, n = 91
No	13	14%
Yes	77	85%
Don’t know	-	< 5%
EI Providers, n = 110
Developmental Specialist	74	67%
Occupational Therapist	68	62%
Speech Language Pathologist	55	50%
Physical Therapist	50	45%
Social Worker	33	30%
Nurse	19	17%
Frequency of EI, n = 107
Multiple times a week	29	27%
Once a week	59	55%
Every few weeks	11	10%
Once a month or less	8	7%
Length of EI, n = 113
Less than 6 months	10	9%
6 months to 1 year	17	15%
1 to 1.5 years	10	9%
1.5 to 2 years	20	18%
2 to 3 years	33	29%
3 years or more	17	15%
Don’t know	6	5%
Post-EI Plan was clear, n = 105
No	37	35%
Yes	68	65%
Concerns at Discharge, n = 104
No	29	28%
Yes, I had concerns	32	31%
Yes, I had concerns and so did other providers	27	26%
Don’t know	16	15%

When speaking to whether they or their providers had concerns after the child graduated from EI, parents in the survey spoke about their child’s needs not being met, “No one knew how to meet her needs,” or a lack of providers to help, “Mental health was not being addressed,” and how behaviors were worsening rather than improving, “Her behaviors were getting worse as she got older.” Parents in the focus groups also spoke about a gap in services between EI and Kindergarten: “Early intervention was great, then we had this gap between 3 and 5 … we couldn’t get any services, and now we’re in kindergarten. We’re having behavioral issues.” One parent expounded on the many concerns they face while raising a child with POE:

Concerns over recent halt in progress and regression, concerns for Autism, concerns he is being overwhelmed. Concerned how very difficult it has become to acquire services…Concerned how truly difficult it is to get diagnosis in a timely manner…Concerned that the provider’s biases related to foster care and NAS contribute to how difficult it is to feel heard and to get my child the care he needs.

Individualized education program

Results regarding IEPs are included in Table 7 and reflect similar high intensity to EI services, with over half (56%) of children in the survey sample receiving services 5 days a week. The type of service received mirrors those provided through EI, with occupational therapy (70%), speech-language therapy (50%), and psychological services (43%) being the most utilized. Furthermore, 65% of children receiving IEP services require classroom accommodations.

Table 7.

School-based services and individualize education plan (IEP)

	n	%
Weekly Frequency of Services, n = 72
1 day	10	14%
2 days	10	14%
3 days	7	10%
4 days	5	7%
5 days	40	56%
Caregiver Agrees with IEP, n = 71
No	22	31%
Yes	49	69%
Type of Services Provided under IEP, n = 54
Occupational Therapy	38	70%
Accommodations	35	65%
Speech-Language Therapy	27	50%
Psychological services	23	43%
Physical Therapy	14	26%
Behavioral/ABA	13	24%
Special Education Services	6	11%
Feeding or Nutritional Services	-	< 10%
Nursing	-	< 10%
Don’t know	-	< 5%

Barriers to services

Nearly half of the survey sample (49%) reported that they did not encounter barriers like time or transportation when accessing services for children with POE, as shown in Table 8. The most commonly reported barriers were a lack of local providers (32%), cost (17%), and a lack of information (16%). No significant variation in barriers was reported based on the state of residence (p > 0.05).

Table 8.

Barriers to accessing services, n = 115

	n	%
No barriers	56	49%
Lack of local providers	37	32%
Cost	19	17%
Lack of information	18	16%
Time	10	9%
Conflict with caregivers’ work	7	6%
Not eligible	-	< 5%
Waitlist or waiting on other approval	-	< 5%
Access (e.g., transportation)	-	< 5%
COVID related restrictions	-	< 5%

Interestingly, in the focus groups, parents stressed, with shockingly similar language, how difficult they found it to get services for their children, “I’ve had to fight for everything that he’s gotten…getting him services is like pulling teeth.” The barriers included not being believed, “Everybody was kind of discounting everything that I was saying, like at the school, nobody was taking anything seriously.” Having to start the advocacy all over again each year, “And it’s been a nonstop battle ever since. And she’s 15 ½, so.” Parents also mentioned being denied services if their child is not struggling academically. Related, parents shared challenges they had in trying to get services for their children in school, “And finally got around to an IEP after 444 years of battling with the school.” One parent shared how long it has taken for her child to receive services, “I had to fight to get a 504 for him in Kindergarten - started the process in November, and it was finalized 2 weeks before he graduated from Kindergarten.”

Discussion

The purpose of the present mixed methods study was to examine health and education service utilization and experiences among children with POE in partnership with parents and caregivers of children with POE. This study makes several contributions to the literature on service utilization among children with POE. First, this study explored the utilization of a wider range of services than prior research. Rather than constricting services to just health care or just education [5, 13–15, 24], we asked parents and caregivers what services they used and heard about EI, occupational therapy, play therapy, sensory therapy, mental health care, school-based services, extracurriculars, and more.

Second, this study’s results confirm prior research that has found children with POE can have higher service utilization than the general population. For example, in Massachusetts in 2020, 10.5% of infants and toddlers received EI, and in West Virginia, 6.8% [32]. In sharp contrast, 80% of our sample reported EI utilization. These results conflict with prior studies finding children with POE were not more likely to be diagnosed with conditions [13], though this study considered a wider range of conditions. In a second example, 40% of our sample reported having IEPs compared to 9.5% of students ages 5 through 21 who are served under IDEA in the general population [32]. This study’s results also suggest, given the incredible challenges parents and caregivers reported trying to access IEPs and other school-based services, that utilization of school-based services could be significantly higher if barriers were addressed. Related, this study also contributes support for the idea of extending EI services until age five, thus avoiding the gap in services between EI and the start of kindergarten; six states have already extended EI to age 5 [33].

Third, the lack of variation in service utilization by type of opioid exposure compared to polysubstance exposure, even when controlling for ACEs, is a significant contribution to the literature. Past literature that found higher service utilization among children with POE noted two potential confounders that are not accounted for in previous analyses– polysubstance exposure and ACEs [13, 14, 16, 24]. For example, prenatal exposure to alcohol – the leading preventable cause of developmental disabilities [34] – could be driving high service utilization, but our study indicates polysubstance exposure is not a significant predictor of service utilization. While parental substance use is associated with other ACEs [35] and child welfare involvement [36], which are both associated with service utilization [37–39], our study indicates opioids are distinctly associated with service utilization while controlling for other ACEs.

Overall, this study revealed the importance of working in partnership with those with lived experience. For example, past research found children with POE were more likely to have IEPs while this study found these percentages, though high, are likely a significant underestimate of the percentage of children with POE who could benefit from an IEP. In another area, past research has found families of children with POE were less likely to attend well-child visits [17], and this study points to a potential explanation - parents and caregivers nearly universally agreed that pediatricians were not helpful. Further, parents and caregivers made it clear how widespread the need is for more professional development among teachers, healthcare providers, and childcare providers on how to support children with POE. Related, parents shared really positive stories about their experiences with physicians who had training in children with POE. Together, these findings suggest that families with lived experience can provide valuable insights into areas of improvement for processes, workforce development, or other mechanisms that may positively impact outcomes for children with POE.

Limitations

The limitations of the present study include limited external validity as the sample is less representative than prior research. This sample is smaller, Whiter, concentrated in two states, mostly foster and adoptive parents, and may have more severe symptoms and delays. This sample had a higher prevalence of polysubstance use [40] and longer lengths of stay in the hospital [41], and higher utilization of EI [42] compared to prior research. This severity could explain why this study found high healthcare and service utilization, whereas prior studies had inconsistent findings. Furthermore, inconsistent identification of cases may contribute to heterogeneity. Neonates receiving treatment for NAS do not consistently receive appropriate ICD 10 coding while being treated [43], and the trends in the use of related ICD codes suggest that there may be ambiguity about which code is most appropriate for a given set of symptoms [44]. Furthermore, a survey asking parents about the development of their child with POE may attract more parents with concerns. Though the use of parent and caregiver reports has limitations, there is value in hearing from the people who know the child best and can speak to the myriad services they are using and their experiences of trying to access them. Recent research indicates lower service utilization among children with POE being raised by their biological families, which is worth exploring in future research [22]. While the survey sample reported the children had relatively few ACEs, birth parents may have more and different information. Finally, the saturation of the qualitative data would have been stronger with additional focus groups. Despite these limitations, this research, which was conducted in partnership with parents and caregivers of children with POE, adds considerable contributions to this growing literature.

Conclusion

In conclusion, with prenatal opioid use continuing to rise [45] and parents of children with POE reporting significant challenges in accessing services, states must invest in services for these children. Based on this information from families, investments in professional development for pediatricians and educators, a clinical understanding of the long-term implications of POE, best practices for the care of these children beyond infancy, more integrated screening and services, and greater access to mental health services are top priorities. Establishing diagnosis codes and providing education around appropriate ICD coding could improve identification, prevent misdiagnoses, facilitate access to services, and improve understanding of the long-term effects of POE. As states allocate funds from opioid settlements, decision-makers should integrate perspectives from families and children directly impacted by NAS as they develop plans to expand services for NAS and other core abatement strategies.

Supplementary Information

Below is the link to the electronic supplementary material.

Author contributions

ALW conceptualized the study, developed instruments, conducted qualitative data collection and analysis, supervised survey data collection and quantitative work, and drafted and revised the manuscript. HSR conducted quantitative analysis and drafted and revised the manuscript. TMH conceptualized the study, developed instruments, facilitated data collection, and reviewed and revised the manuscript. All authors approved the final manuscript.

Funding

This research was supported by funding from To the Moon and Back, Inc.

Data availability

Data from the focus groups cannot be de-identified sufficiently to protect respondent confidentiality and thus cannot be shared. Quantitative data from the surveys are available from the corresponding author on reasonable request and with permission from To The Moon And Back.

Declarations

Ethics approval and consent to participate

The research protocol was reviewed and approved by the Child Trends Institutional Review Board (FWA00005835; Children of the Opioid Epidemic 17227-00-000). The Child Trends IRB issued a waiver of documentation of informed consent. We provided all participants with standard consent information, asked them to verbally consent for the focus groups, and allowed them to leave the focus groups if they chose. Survey participants reviewed risks, benefits, and confidentiality statements and confirmed they were participating voluntarily in accordance with our IRB-approved protocol. All methods were carried out in accordance with relevant guidelines and regulations. All participants were over the age of 18.

Consent for publication

Not applicable.

Competing interests

The authors declare no competing interests.