Connecting to early intervention services after NICU discharge in a Medicaid sample

Abstract

Objectives:

To describe caregiver perspectives regarding connecting to Early Intervention (EI) services after NICU discharge in a Medicaid sample.

Methods:

Open-ended semi-structured interviews and focus groups were conducted with English or Spanish- speaking families enrolled in Medicaid in an urban high-risk infant follow up clinic at a safety-net center, which serves preterm and high-risk term infants. We generated salient themes using inductive-deductive thematic analysis.

Results:

Thirty-two participants completed the study. The infant’s median (IQR) birth weight was 1365 (969, 2800) grams; 50% were Hispanic; 31% reported living in a neighborhood with 4^th quartile economic hardship. Eighty one percent were classified as having chronic complex disease per the Pediatric Medical Complexity Algorithm and 63% had a diagnosis of developmental delay. A conceptual model was constructed and the analysis revealed major themes describing families’ challenges and ideas to facilitate connection to EI. We identified sub-themes related to the person in environment: healthcare environment/support and socio-economic resources, parent perspectives and built environment; provider level factors such as appointment scheduling, staff limitations and parent suggestions to improve healthcare and service navigation, which included improved information sharing, the importance of patient advocates, video resources, early referrals to EI facilitated by the discharging hospital and system workarounds.

Conclusions:

The results from this study may provide a granular roadmap for providers to help facilitate referrals to EI services. We identified several ideas such as using advocates and providing transitional resources, including online media, that might improve the connection to early intervention services.

Introduction

High risk infants born prematurely or at term with critical illness are at increased risk of developing physical, neurodevelopmental, and behavioral dysfunctions such as impairments in visual, motor, and executive function.^1–5 Early intervention (EI) programs provide developmental therapies and services after NICU discharge to promote resilience in physical and cognitive development and enrollment has been shown to improve school-age outcomes.⁶ The Early Intervention Program for Infant and Toddlers with Disabilities was enacted under part C of Individuals With Disabilities Education Act (IDEA, part C).^{7, 8} EI programs are funded and regulated by both federal and state authorities.⁹

However, there is great variation in eligibility for EI after NICU discharge by state.¹⁰ In California, infants and toddlers aged 0–35 months are eligible for EI services if they exhibit a developmental delay of at least 33% in one of these areas: cognition, communication, social or emotional, adaptive or physical or have an established risk condition with a high probability of developmental delay, have an established risk condition, or a combination of biomedical risk factors. Supports offered by EI including family training, therapies such as speech and language, occupational and physical, behavior intervention, psychological services, service coordination, and vision services. California EI service centers have 45 days to respond from referral to complete a client evaluation.⁹

EI only served 2.9% of the 0–2 year population in California in 2016 compared to the national average of 3.1%.¹¹ Twenty one regional centers in California served approximately 329,000 children and adults in California in 2020; 14% were 0–2 years and 45% reported Hispanic ethnicity. In Los Angeles County (the catchment area of this study), regional centers served between 10,000–25,000 clients each, 14–16% were aged 0–2 and 45–70% were Hispanic.⁹ These differences in number of clients and distance from clients may affect staff/client ratios and intensity of services.

Unfortunately, up to 80% of children referred to EI do not complete an evaluation,¹² and as few as 10% of those eligible for EI due to developmental delays receive these services.¹³ Even in a population of infants that are known to be high risk in terms of their likelihood of experiencing developmental delays, EI service utilization remains low.¹⁴ Minority and low-income families have lower rates of service intensity and higher rates of attrition from EI services.^15–18 For example, in Massachusetts, EI evaluation was negatively associated with young maternal age, Black maternal race and high poverty level.¹⁶ In a recent study by McManus et al., children living below the federal poverty threshold were less likely to receive greater occupational therapy intensity of services.¹⁷ Moreover, Feinberg et al. identified that by 24 months, Black children were less likely to receive services as White children in the Early Childhood Longitudinal Study.¹⁵

In the transition from NICU discharge to EI services, there are a variety of steps and multiple stakeholders that may cause a delay or even a complete failure of the referral, evaluation, and receipt of these important therapies despite state and federal regulations around provisions. Enrolling in EI and sustained participation has been demonstrated to be complex. Studied barriers to access to EI and subsequent delays in enrollment and participation include failed provider referrals,¹⁹ communication problems with pediatricians, parents not understanding the EI referral process, logistical challenges such as families losing the phone number to the EI program, and families confusing EI programs with child protective services.²⁰ Litt et al. recently published a progress report, “Community based early intervention services for high risk infants: unanswered questions leave room for improvement” which underscores the importance of family engagement in the timely enrollment of EI services and access for families.²¹ Our objectives were to describe constructs around individuals, health behaviors, patient navigation and provider factors to improve the connection to EI services after NICU discharge in a Medicaid sample.

Methods

Research team and reflexivity

The author (A.L.), a neonatologist, and research staff with qualitative methods experience conducted the interviews. These members of the research team had familiarity with the patients’ history and diagnoses prior to conducting the interviews. The participants were aware of the authors’ goals and interviewer characteristics.

Study design and theoretical framework

This was a qualitative prospective study. The methodological orientation used for this study was inductive thematic analysis. We leveraged the behavioral-ecological framework of healthcare access and navigation.²² We supplemented open-ended semi-structured interviews of individual participants with multiple participant focus-group interviews to allow for participants to brainstorm ideas with others.

Participant selection and setting

The participants were recruited using purposive, typical case sampling. The participants were approached using face-to-face or telephone recruitment. Participants were recruited from a high-risk infant follow up clinic at a quaternary urban safety-net children’s hospital that serves a primarily Medicaid-insured population. Interviews were conducted in 2017 and focus groups were conducted in 2018. This clinic provided multidisciplinary follow up for infants with gestational age < 32 completed weeks or birth weight < 1500 g or infants who received extracorporeal membrane oxygenation or therapeutic hypothermia or had other problems that could result in neurologic abnormality.

We included English- or Spanish-speaking parents if enrolled in Medicaid for infants with complex health care needs. Families were approached at the initial visit after NICU discharge or at one of the three standard visits recommended by California Children’s Services High Risk Infant Follow Up (HRIF) program (4–8 months, 12–16 months, and 18–36 months corrected age). We included a range of enrollment times to understand the spectrum of issues in regards to barriers and facilitators with enrollment in EI. The interview was conducted by telephone and the participant was given a monetary incentive upon completion of the interview. If the interview or focus group was conducted in Spanish, interpretation services were used. The Children’s Hospital Los Angeles (CHLA) human subjects protection program approved the study protocol and all subjects provided informed written consent. Of the 45 eligible participants, 32 participated. The participants were approached at random if they met inclusion criteria. The 13 non-participants either declined to participate or consented but then could not partake in the interview or focus group. Of the non-participants, all were insured by Medicaid, 50% reported Hispanic identity, 38% were Spanish speaking and 50% were participating in their final visit with the HRIF program when approached. We finished recruitment once thematic saturation was reached.

Development of interview guide

A literature review and key stakeholder (informant) interviews with families, neonatologists, developmental pediatricians, clinical care coordinators and nurses informed the interview guide. After the initial creation of the interview guide, we completed an additional literature review with our medical librarian using PubMed, EMBASE and CINAHL databases to identify a theoretical framework to better understand the phenomenon of navigating community based services and identified the behavioral-ecological framework of healthcare access and navigation proposed by Ryvicker to be the most appropriate.²² We adapted this framework to our research question by adding a few specific modifiers to key constructs. Specifically, we defined realization of services as connection to EI, health outcomes as infant neurodevelopmental and medical outcomes and parenting confidence and quality of life and provider factors as scheduling and caseworker/therapist ability (Figure 1). During data collection, we refined the guide (Supplemental Material) in an iterative fashion and pilot tested it prior to administration. Field notes were collected during all interviews and focus groups.

Figure 1:

Conceptual Model, Adapted from the Behavioral-Ecological Healthcare Access and Navigation Framework, Ryvicker M. A Conceptual Framework for Examining Healthcare Access and Navigation: A Behavioral-Ecological Perspective. Soc Theory Health. Aug 2018;16(3):224–240. doi:10.1057/s41285-017-0053-2

Data collection

We approached study participants in the clinic and then scheduled open-ended semi-structured telephone interviews or telephone based focus groups. Interviews were recorded on a digital recorder and then transcribed by a third party service. Interviews were 30–40 minutes and focus groups were 45–60 minutes. When participants finished their interview, they received a gift card. Caregiver demographic data and data about the infant’s health were extracted from the medical record.

Data analysis

Transcripts were imported into Dedoose Version 8.3.35, web application for managing, analyzing, and presenting qualitative and mixed method research data (2020). Los Angeles, CA: SocioCultural Research Consultants, LLC www.dedoose.com.²³ We used an inductive thematic analysis approach; an iterative process of coding to identify the patterns between concepts; themes were identified in advance based on our framework²² and supplemented from the data. Two coders (C.E. and I.S.) shared initial coding duties, and a third coder (A.L.) double-coded interviews to increase validity. The codebook was modified as necessary and discrepancies were resolved through consensus, and we kept an audit trail. Our approach was to develop a set of codes from repeating themes in the data and to conduct co-coding until we had consensus. The ultimate codebook contained 15 codes. In total, 334 unique excerpts were coded between 1 and 10 codes each.

Results

Demographics

As outlined in Table 1, participants were 50% Hispanic, 91% English speaking, 31% resided in a home zip code in a service planning area (SPA) with the highest quartile for economic hardship and 100% were receiving Medicaid. Of note, 81% of children met criteria for complex chronic disease by the Pediatric Medical Complexity Algorithm,²⁴ 28% required prescription medication, 28% had durable medical equipment and 63% had a diagnosis of developmental delay after discharge. Forty seven percent of families completed the initial visit after discharge and 88% of families completed the 4–8 month corrected age HRIF visit. Fifty three percent were receiving EI services. Median (IQR) distance in miles to the HRIF program and early intervention services were 15.5 (9.4, 21) and 7.8 (4.3, 18.9).

Table 1:

Infant and Parent Demographics (n=21)

	N (%)	Median (IQR)
Infant demographics
Race/Ethnicity
Hispanic	16 (50)
Black non-Hispanic	4 (12.5)
White non-Hispanic	7 (22)
Asian	1 (3)
Other (Native American, Mixed)	4 (12.5)
Gestational age (weeks), median (IQR) if preterm		32.8 (28.8, 36.5)
Birth weight (grams), median (IQR)		1365 (969, 2800)
Chronologic Age (months), median (IQR) at enrollment in study		6 (5, 7.3)
Term infants being followed in high risk infant follow up clinic	6 (19)
Neonatal diagnoses
Bronchopulmonary dysplasia	8 (25)
Retinopathy of prematurity requiring intervention	9 (28)
Necrotizing enterocolitis (surgical)	2 (6)
Intraventricular hemorrhage (Grade III/IV)	3 (9)
Infants with medical complexity (post-discharge)a
Complex Chronic Disease (C-CD)	26 (81)
Non Complex Chronic Disease (NC-CD)	4 (13)
Non Complex Non Chronic Disease (NC-NCD_	2 (6)
Infants requiring prescription medications after discharge	9 (28)
Infants requiring durable medical equipment after discharge	9 (28)
Oxygen	5 (16)
Feeding tube (gastrostomy/jejunostomy)	6 (19)
Diagnosis of developmental issue after discharge(may have more than 1)	20 (63)
Language delay	7 (22)
Autism risk	3 (9)
Sensory issue	5 (16)
Global developmental delay	11 (34)
Cerebral palsy	4 (12.5)
Completion of discharge HRIF visit	15 (47)
Chronologic Age (months), median (IQR)		2 (2,3)
Completion of 4–8 month corrected age HRIF visit	28 (88)
Chronologic age (months), median (IQR)		6 (5, 6.5)
Completion of 12–18 month corrected age HRIF visit	25 (78)
Chronologic age (months), median (IQR)		13 (13, 14)
Completion of 18–36 month corrected age HRIF visit	12 (38)
Chronologic age (months), median (IQR)		25 (24, 29)
Early intervention services received	17 (53)
Speech therapy	10 (31)
Occupational/Physical therapy	16 (50)
Vision	1 (3)
Maternal demographics
Primary Language
English	29 (91)
Spanish	2 (6)
Other	1 (3)
Neighborhood equityb
Home zip code in service planning area (SPA) with 4th quartile economic hardship index	10 (31)
Medicaid/California Children’s Services	32 (100)
Distance to HRIF clinic from participant home, miles, median (IQR)		15.5 (9.4, 21)
Distance to early intervention program from participant home, miles, median (IQR)		7.8 (4.3, 18.9)

^aDefined by Pediatric Medical Complexity Algorithm (version 3.0) (measurement tool accessed at: https://www.seattlechildrens.org/research/centers-programs/child-health-behavior-and-development/labs/mangione-smith-lab/measurement-tools/)

^bService planning area 6, 7, 8 (4^th and highest quartile of economic hardship index)

Conceptual Model

We derived a conceptual model (Figure 1) based on the behavioral-ecological framework of healthcare access and navigation proposed by Ryvicker.²² We highlight the importance of healthcare navigation in accessing EI services accounting for person in environment and provider factors.

Themes

The analysis revealed fourteen themes which are presented in context of the conceptual framework/model in Tables 2–4.

Table 2:

Themes and Illustrative Quotations, Person in Environment

Framework Construct	Themes	Quotations
Healthcare environment/Support and socio-economic resources
	(1) Meeting needs of multiple therapies a week	“Physical therapy and OT. I think actually after one of our next procedures then we’ll start speech. We’re trying to figure out coordinating those therapies, considering at this point we have almost always one therapy per day.” “I didn’t get any support. As soon as I was out of there, I was home with him for two months, then I went back to work. And then after six months I completely quit my job. And then he started getting better, but because I was so busy with therapy I couldn’t keep up with work and therapy at the same time. He gets three therapies a week.”
Individual characteristics and parent perspectives
	(2) Comparison to health full term babies	“I think that’s true, I think one of the things I’ve learned is that while my son was in the NICU I think I had this idea that he either wouldn’t get better and wouldn’t make it or that he would come home totally healthy which I realize now is idiotic. But at the time I just honestly didn’t know that babies came home with all these health needs. And so I think that’s something I’ve definitely learned and he’s made amazing progress but it’s definitely slow and it has not been the road I expected.” “You should never, ever, ever, ever, ever compare your child with a normal healthy brand new baby. It, nothing will ever compare, you will always come up disappointed for the majority of the time and it will kill your spirit. Like never, ever, ever compare your baby with another, with another normal baby and don’t go to people who have had healthy babies for advice on your child’s medical needs.” “Yeah I think that’s good advice. I think a lot of people try to be supportive and they would talk about their babies who are in the NICU but a lot of the babies tended to be far less needy and so I think it got it in my head that, just a different expectation.”
Built environment	(3) Locations of centers	“It took me forever to, to find this because they closed down one center then it, they closed down one, problem, then they went to another building and it was just too much.”

Table 4:

Themes and Illustrative Quotations, Healthcare Navigation Ideas

Framework Construct	Themes	Quotations
Ideas to Improve Transition/Navigation
	(10) Information sharing	“I was confused about EI and regional center and all that stuff for quite a while. Like not just contact number but actually like a brief description of what they are for. And as we’ve gotten more diagnosis we’ve heard about more programs. So like, we’ve heard you know as you, we found out his hearing loss being severe then we’ve found out about more programs to help with that. But it’s all been very gradual and I feel like I have to do a lot of the research to learn about it.” “Just have, have it, okay, like you said, a class. Have them have a, for the regional center[early intervention services] have them come out there and say hey, this is the process, this is what’s going on, please don’t be discouraged, I know sometimes our regional, explain to them instead of letting this just sneak up on our butt and say hey, go fend for yourself with this regional because it’s gonna take process.” “It would be nice to have like in regards to early intervention, like things that could be done at home on your own without like a physical therapist or occupational therapist. Like, what things are good for baby early on in order to help like alleviate some possible issues in the future.” “You know, like maybe you need first couple months or first weeks, try doing this, try doing that. You know, something that we could do at home because sometimes, you know, my baby, for her to get a, a PT it took her maybe like a month-and-a-half after she got out of NICU, and okay, and what am I supposed to do in that month-and-a-half while she gets like, she’s going to be, you know, behind and I don’t what that. So like I said, like I’m pretty new at this so I didn’t know exactly what to do. So I had to go and do the research myself. And it did help a little bit until she did get her PT. But, I just wished this information was given to me when I left the NICU with my baby.”
	(11) Involving advocates/Patient Navigators	“You know, have one of those advocates that’s in the regional center [early intervention program] or, or whoever be there with the doctor and, and with you and have a meeting and state hey, okay, we’ll put your daughter on, yes, okay, we’re, we’re on it right now. Instead of you have to go down there, they make you wait, then they sign you up, then they tell you to come back, then you gotta get approved and all of this. It’s just too much. For a parent. With so many other um, things that, obligations that I have to do.” “It would be better that they have a couple of advocates come and, and be, or maybe have uh, like they did when you, when we were in the G-tube have a class or have somebody come out there and speak about how the services work and where they can go to.” “Give us an advocate that’s from the regional center come down there or, or teach us a class or try to get the best way how we can go without, without this, you know, going through you know, hell and high water just to get your baby in services. And then when we do get our baby in services we have to wait. It’s a waiting game.”
	(12) Providing transitional multi-media resources	“Honestly I guess it depends on the parent. But for me the best way would be either video chat or like on the phone or something, because you know I can’t always make it down to meet up with someone in person.” “ I mentioned earlier like her PT taking a little long to kick in. So I would just, um, looking, YouTube being like what, the exercise I could do with her. Or, you know, just, some tricks.”
	(13) Early referrals facilitated by discharging hospital	“The social worker from the hospital also gave us the paperwork. But it was after he had already submitted the application with all the information to the regional center.” “We were told when my son was still in the NICU that it’s something we may want to look into. So I had, already had an appointment scheduled. I filled out the application and did the phone interview with them. And, and had an intake appointment before I even made it to a high-risk clinic, where they told us to make sure that we connect with the Regional Center [Early Intervention}.” “I’ve met some really good people at actually who’ve made phone calls on my behalf and have gotten things through more. Because honestly I feel like regional center doesn’t want to talk to parents but if the hospital calls they will talk to them. So that’s been a huge plus. We have had really, really helpful nurses intervene on our behalf to actually things going. Yeah, that’s been positive.”
	(14) System workarounds	“The only reason we reached out so early to the Regional Center [Early Intervention] is because I have a nephew that uses the Regional Center. So we were already, my family was already familiar with the process, with, which kind of helped.” “I probably shouldn’t tell you this but what I ended up having to do was put my parents’ address and switch my daughter to a different regional center.”

Person in their environment (individual characteristics) (Table 2)

Themes 1–3: Multiple sessions per week, comparison to normal babies and location of centers

Parents recounted the expensive permits for parking, inability to drive to intervention services without a car, and difficulty finding the exact location of the appropriate EI center. Also challenging was scheduling multiple sessions. “We have A, B, C, D appointments and then we have to rush home in between cause she [infant] has this therapy or that therapy.” Several participants commented on the built environment and the difficulty of moving centers, “It took me forever to, to find this because they closed down one center then it, they closed down one, problem, then they went to another building and it was just too much.”

Provider factor challenges, Realized access to Care, Outcomes (Table 3)

Table 3:

Themes and Illustrative Quotations, Provider Factor Challenges, Realized Access to Care and Health Outcomes

Framework Construct	Themes	Quotations
Provider factors
	(4) Difficulty and delays in starting EI services	“It took 3 months for the earliest therapy to start and then about 6 months for some of the other, we’re still waiting on some stuff. It’s incredibly slow. That’s been very frustrating.” “Oh! I waited for these, first they had me on some number. They told me to leave a message and they would get at me [and] they didn’t. Then they told me to come to their new one [center]. I went down there, I filled the paperwork out, then they told me to, after I filled the paperwork out, it was gonna take a while. Well, then after that they had to get authorizations, from the doctor and the medical people they have to get paid, of course, I can understand that. And then after that, after that happened, so it took me, like I said, six months.” “It’s hard as it is, us being parents. We’re waiting for a long period of time to get some services, but by the time you get the services your daughter might be too old for the services because you’ve been waiting for this.”
	(5) Staff limitations: Therapist availability	“That’s really what it comes down to. They don’t have enough therapists, they don’t have enough staff at regional center so. It’s hard to get it.” “I think the hardest thing was just finding a therapist that would come into the home and that was like G-tube certified, or like someone that met like my daughter’s medical conditions, that could do it for her.”
	(6) Staff limitations: Caseworker availability	“I also feel like honestly I’ve understood the system a little better than our caseworker just through like asking a lot of questions. Because she won’t even be aware of stuff I’ve asked for. I think they’re massively, massively overworked. It’s not necessarily the people are bad people I think they have way too many clients.” “In the beginning Regional [Early Intervention] was really, really cool about everything because I had one worker. And then somehow, I don’t know if the worker was released from the place or whatever but we weren’t even notified about it. So I, I didn’t even know that I had lost my worker. And then they told me I would have to call the officer on duty and that changed every single day. And then they didn’t notify us when we had a new one.” “I feel like they’re just so, so overworked and we also had a, a caseworker at the beginning who never return my calls and wasn’t very good. And then we were switched to someone else who I was hoping would be better but she’s so inexperienced. And she keeps telling me like she’s never dealt with any of these special therapies that my son needs and I mean she told me that about 2 different things we’ve requested and she seems really unfamiliar with the process. So I feel like you have to really, really stay on them um and call and call and call and be the annoying person who leaves a ton of messages for them to call you back. It’s a mess, it’s not organized at all and it takes forever to get anything done.”
	(7) Quality of services/Comparison between hospital care and EI programs	“Yeah the level of care isn’t half as good [as the hospital] and just there, there’s just not enough people.” “That’s been very frustrating, we got amazing therapies in the hospital, and it’s very hard to get to regional center, and the people at the regional center, some of them are good but in general they don’t care half as much as the therapists at the hospital.”
Realized access to care
	(8) Ease of connection to services	“{Early Intervention services] has been really excellent for us to work with. So my daughter is receiving services for infant stimulation, occupational therapy or her eating and physical therapy. That’s been really convenient for us because you know we get to work in an environment at home where my daughter is familiar, I don’t have to kind of shift around from place to place taking her to all these extra appointments and things. I mean communication with them has been phenomenal and even with the therapists themselves it’s been so good.”
Health outcomes
	(9) Health and developmental improvements	“I was going to say my son gets a ton of therapies through Regional, I am very grateful for Regional that they provide all of these therapies and overall they’ve been good.” “Like there’s 2 of them that my son just absolutely adores and they’ve worked some, some miracles with him. They’ve done some great things with him and he, he’s thriving.” “ I’m really happy uh, how my baby is uh, learning new things and I, I’m really happy with this. We’ve seen so much improvement.” “She did fine, but her motor skills were a little, lower but ever since she’s been receiving therapy she’s been improving a lot.”

Theme 4: Difficulty and delays in starting EI services

The greatest challenge faced by almost all the parents interviewed was the amount of time between NICU discharge and the first day of EI followed by insurance approval and appropriately trained staff. A summary of these challenges led parents to feel their children could grow out of the time period where services would be beneficial. For example, parents shared, “It’s hard as it is, us being parents. We’re waiting for a long period of time to get some services, but by the time you get the services your daughter might be too old for the services because you’ve been waiting for this.”

Theme 5–6: Staff limitations: Therapist and Caseworker Availability

While parents were grateful to receive intervention services, not all parents felt the therapists were trained well enough to provide services needed by the newborns. Parents also believed staff were so overworked that staff could not keep up with infant information and care, “I think they’re massively, massively overworked. It’s not necessarily the people are bad people I think they have way too many clients.”

Theme 7: Quality of services/Comparison between hospital care and EI programs

Parents with previous experience receiving therapy for their children from hospitals during NICU care compared the care provided by EI therapists. Although parents expressed gratitude and acknowledged the improvements made by infants due to therapeutic services from regional EI centers, they often felt EI services were not as good as the services provided by the hospital. As one participant described, “Yeah the level of care isn’t half as good [as the hospital] and just there, there’s just not enough people.”

Theme 8: Ease of connection to services

When families were able to connect to EI services, they attributed “good communication” with EI staff (caseworkers or therapists) as the reason for success. Of their interaction with their child’s EI center therapists, one parent said, “I mean communication with them has been phenomenal and even with the therapists themselves it’s been so good.” They expressed gratitude for being able to communicate easily, whether that meant securing an initial appointment or having the flexibility to adjust with their child’s individual therapists.

Theme 9: Health and developmental improvements

When parents reflected positively on their experience with early intervention services, they often commented that they valued the visible benefits these services had on their child’s development and expressed gratitude that the therapies their child received would reduce the likelihood of them experiencing greater health or developmental issues. One parent described the EI therapists working with her son, saying “they’ve worked some, some miracles with him. They’ve done some great things with him and he, he’s thriving.”

Healthcare Navigation Ideas (Table 4)

Theme 10: Information Sharing

Among parents who did learn about EI services and sought services, a common theme emerged of not having enough information about EI centers. The lack of information made it difficult for parents to receive services. “I was confused about EI…and all that stuff for quite a while. Um like not just a contact number but actually like a brief description of what they are for.” Parents suggested that information about EI should be taught like a class, “Just have, have it, okay, like you said, a class.”

Theme 11: Involving Advocates/Patient navigators

A common theme that arose was the concept of advocates to support families through this aspect of discharge. One participant described that the advocate could be someone who “put us on the list right then and there,” which would in theory improve continuity of care and decrease the timeline between discharge and appointments for evaluation by EI. Another participant suggested that the purpose of these advocates from EI centers should be to “say hey, this is the process, this is what’s going on, please don’t be discouraged.”

Theme 12: Providing Transitional multi-media resources

Participants expressed a desire to be educated about how to implement some similar therapies and support for their child as are offered by EI. A participant described that since there was no formal opportunities to learn how to support her child’s development at home, she “would just, um, looking, um, YouTube being, um, like what, the exercise [she] could do with her [child].”

Theme 13: Early Referrals to EI from the discharging hospital

Parents frequently commented that the experience of trying to schedule services was more successful when they had hospital staff – nurses, social workers, or a pediatrician – intervening on their child’s behalf. One parent observed that “[the EI center] doesn’t want to talk to parents but if the hospital calls, they will talk to them,” and proceeded to express gratitude for the nurses at the NICU who had intervened on her child’s behalf to schedule an appointment with the EI center.

Theme 14: System workarounds

Parents commented that they found more success in accessing services because they utilized family connections or experience to better navigate the system. One parent commented that because her nephew received services through EI, she was already familiar with the process. Another parent was savvy enough to use her parents’ home address to gain access to a less busy EI center than the one local to her own address.

Discussion

Despite considerable evidence that the majority of children who are eligible for, and even those who are referred to EI never receive these services, the role of parents in this process has not been emphasized in previous work. Our study demonstrates that there are a number of common challenges that parents face in this process including logistics of accessing services, scheduling appointments and staff limitations. Caregivers also offered several ideas for families to navigate this process such as an advocate or patient navigator. Family engagement is tantamount to ensure a successful transition from hospital-to-home.

The parents interviewed for this research also emphasized their desire to have an advocate in this transition, which they described as being someone who could support them through the process of referral and up to the receipt of services at EI. Pairing families with someone with previous experience and knowledge of the referral and evaluation process for Early Intervention has already proven to be an effective method for drastically improving the rates of connection to EI.²⁵ Even for highly motivated parents, the process of obtaining services for a child after referral may be stressful and demanding. Given that not all parents have the resources and time to serve as such staunch advocates for their infants, the use of advocates or “patient navigators” appears to be a promising solution.²⁵

We found that parents desired more education so that they could work with their child to ensure appropriate development while waiting to schedule therapies through EI. Supporting parents to interact and play with their premature babies in a manner that may improve and enhance developmental outcomes can successfully bridge this gap between the care that neonates receive in the NICU and therapies through Early Intervention.^{26, 27} Moreover, online and web-based programs can be as effective than in-home and in-person programs with similar goals, as has been demonstrated through the relative success of mobile intervention services to support parents in the EI referral process.²⁸ In previous work we also identified that use of smart phones and messaging was associated with EI enrollment.²⁹ Leveraging mobile health solutions to connect families with EI may be critically important now, during and following the COVID-19 pandemic as families have had more difficulties accessing in-person resources.³⁰

Participants emphasized that successful connections to EI often started in the hospital before discharge. As a health system we must try to operationalize connecting families to their first high risk infant (HRIF) visit and EI visit before discharge. For example, Brachio et al. outlined a parent education initiative that began in the NICU that involved a bedside meeting with HRIF staff, appointment scheduling and a warm handoff to the primary care provider; first visit rates improved from 60% to 76% during the intervention period.³¹ Other successful program such as the Transition Home Plus Program³² and the Family Integrated Care model³³ integrate multidisciplinary and family integrated care before and after discharge.

The findings of this study should be considered in light of its design. While we purposively sampled low-income minority Medicaid patients receiving care from an urban children’s hospital, that was the target of our research question. We wanted to understand more about the lived experience of these families to provide more equitable care. Therefore, the opinions provided in the discussion may not be representative of populations from higher socioeconomic status. There was potential selection bias given that a higher proportion of non-participants were Spanish speaking (38%) versus 6% of participants. While we used interpretation services to approach families to enroll and schedule participation in interviews/focus groups perhaps families did not feel as comfortable to take part in the study without native Spanish speaking research staff. Moreover, we did not collect information relevant to whether services were provided at home or at the EI service center which may have given more context to our findings about parking and transportation to receive services. Furthermore, far fewer fathers were interviewed in comparison to mothers. Exploration of the fathers’ experiences may lead to additional themes not identified in this discussion. Telephone interviews are also limited to verbal communication, which limits the interviewer’s ability to build trust with the participants. Finally, this study occurred before the COVID-19 pandemic when there has been less than usual in-person supports.³⁰

The results from this study imply that families continue to face challenges connecting to Early Intervention services and also had specific recommendations to NICU providers to help families access EI services which include:

1. Develop materials (printed or digital) for families regarding the benefit of early and timely enrollment and intensity of EI services.

2. Consider having a multidisciplinary meeting prior to discharge to discuss at-home therapies while waiting to start EI services.

3. Integrate a patient advocate/navigator or family advisory councils into discharge planning.

4. Initiate the referral to EI prior to discharge from the NICU and provide information regarding the referral to the primary care provider as part of the discharge summary.

Conclusions

The results from this study may serve as a granular roadmap for providers (such as NICU staff, the primary care pediatrician and the HRIF program) to help facilitate connecting families with EI services. We identified several ideas such as using advocates and providing transitional resources, including online media, having multidisciplinary discharge meetings and initiating referrals prior to NICU discharge that might improve the transition to early intervention services.

What’s new:

Little is known about parent perspectives regarding connecting to early intervention services after NICU discharge. We identified several ideas such as using advocates and providing transitional resources, including online media, that might improve the transition to early intervention services.

Abbreviations:

NICU

neonatal intensive care unit

EI

Early Intervention