Synthesizing Interest-holder Perspectives and Evidence-based Potentially Better Practices to Improve High-risk Infant Follow-through Care Quality

Abstract

Introduction:

Despite specialized high-risk infant follow-up (HRIF) being the standard of care for preterm and medically complex infants after hospital discharge, program participation remains low, and equity gaps persist. Little work has examined HRIF’s perceived value, or lack thereof, for families, staff, and other key interest-holders. Our objective was to examine interest-holders’ perspectives of the value of the HRIF program using qualitative methods to inform continuous quality improvement (CQI) work.

Methods:

Families (n = 6) and staff (n = 9) in a single, urban pediatric hospital HRIF program participated in semistructured interviews. National content experts (n = 4) did as well. All interviews explored barriers and facilitators to HRIF participation, patient experience, and program goals/operations using a grounded theory approach to thematic analysis. Finally, the resulting themes were compared to the domains of the Vermont Oxford Network’s Potentially Better Practices (PBPs) for Follow-Through.

Results:

A majority (≥50%) of participants highlighted each theme. Staff and family themes included HRIF staff’s care expertise for formerly preterm infants, the benefits of long-term monitoring, and the need for greater family engagement and action on social determinants of health. Families alone indicated a need for better support during transitions from the neonatal intensive care unit and HRIF. Most participants highlighted the program’s multidisciplinary nature as important. Study themes were synergistic with PBP domains.

Conclusions:

Interviews with key interest-holders identified benefits of HRIF program participation while offering critical insights into opportunities for CQI initiatives. Given the alignment of evidence-based PBPs with reported themes, future research should explore the clinical application of PBPs in follow-through CQI work.

INTRODUCTION

Children born very preterm (ie, <32 wk gestation) or with significant illness are at risk for ongoing health and developmental challenges after discharge from the neonatal intensive care unit (NICU).^1,2 High-risk infant follow-up programs (HRIF) routinely provide medical and developmental surveillance and support to very preterm children and their families from discharge through early childhood. The American Academy of Pediatrics recommends routine multidisciplinary follow-up for NICU graduates, yet there are no guidelines for the content, cadence, or structure of follow-up visits.³ Additionally, there are no universally agreed-upon metrics for the quality and value of clinical HRIF care.⁴ As a result, there is a great deal of heterogeneity among HRIF programs, including variability in patient eligibility, visit frequency, and service type.⁵

Varied models of HRIF care have emerged, developed in parallel with key clinical partners who provide follow-up care, such as community-based pediatricians and subspecialists. Some clinics start seeing infants in the weeks immediately after discharge, whereas others wait 6–12 months postdischarge. The duration of follow-up also varies, with some programs ending at age 2 years whereas others continue through school age.⁵ Only half of eligible infants receive recommended follow-up in dedicated HRIF clinics.⁶ This may be due to a lack of referral before NICU discharge,⁷ structural barriers to program access,^8,9 and/or lack of perceived value.¹⁰ Two in-hospital efforts improved HRIF attendance, but the studies did not address structural barriers or perceived value.^11,12 There are well-documented inequities in HRIF participation across race, ethnicity, language, and neighborhood, reflecting systemic barriers.^9,13–15 Finally, the lack of professional standards for clinical HRIF may contribute to poor participation, missing or duplicated services, and/or health inequities.⁶

Conversely, continuous quality improvement (CQI) efforts have a robust history in neonatology, particularly in NICU quality and safety. Yet appropriate investments in improvement remain missing from HRIF, perhaps because the field does not typically recognize it as a standalone health service. For example, the tools often used to reduce nosocomial infections and neonatal morbidities could be explored to improve access and use, maximize effectiveness, and close equity gaps in HRIF.¹⁶ The Vermont Oxford Network (VON), a leading source of neonatal quality improvement education and methodology, has reconceptualized HRIF as a broader commitment to following through in supporting the medical, developmental, and psychosocial needs of infants and families after NICU discharge. Their Potentially Better Practices (PBP) for Follow Through identify domains for creating high-value and equitable HRIF programs, and a companion toolkit provides resources for evidence-based practice.¹⁷

Before such CQI efforts can be undertaken, critical gaps in our current approaches to HRIF must be addressed. Though we have data on HRIF participation rates and inequities by infant and family characteristics, we lack a deep understanding of the drivers of these patterns. HRIF program improvements can only be made with a shared understanding of the purpose and goals of HRIF care. In this qualitative study, the first aim was to elucidate perspectives on the quality and value of the HRIF from three key interest-holder groups (ie, families, content experts, and staff) at our single urban pediatric hospital HRIF program. We then explored whether VON’s PBPs aligned with interest-holder and generated themes to guide quality improvement initiatives in our program.

METHODS

Reporting follows the Consolidated Criteria for Reporting Qualitative Research guidelines.¹⁸ The hospital’s institutional review board approved this study.

Participants, Setting, and Recruitment

The study took place in a single quaternary care children’s hospital HRIF program. The population invited to participate comprised 3 key interest-holder groups: (1) primary caregivers of patients enrolled in the program (n = 6), (2) program staff members across various disciplines (n = 9), and (3) national content experts in the field of maternal and child public health (n = 4). Content experts provided a general perspective from their field, as they are not currently involved with the program. A purposive sampling frame ensured inclusion of HRIF families representing a range of gestational ages and diagnoses, as well as content experts with complementary expertise in maternal and child public health and family advocacy; all invited family and content experts agreed to participate. The majority of staff (82%) agreed to participate. J.S.L. (Clinic Director) and L.E.R. invited participation. L.E.R. conducted the interviews. All participants signed informed consent. Families received a gift card for their time.

Interviews and Data Collection

L.E.R., a female scientist with training and extensive experience in public health, health literacy, and qualitative research, who is also the parent of children who participated in HRIF, conducted all 19 interviews in English via telephone in spring 2020. No participants dropped out after recruitment. Participants chose their own setting for the telephone interview. Three staff members and all four content experts were previously known to LER through personal or professional interactions. A standard recording feature built into a secure iPad recorded telephone calls after interviewees gave verbal consent. Each interview began with a description of the study goals and rationale for the qualitative design. De-identified audio recordings were securely submitted to a transcription service (Otter.ai Inc, 2021) and deleted immediately after completion of transcription. N.S.D. and L.E.R. manually reviewed transcripts to ensure fidelity, but they were not returned to participants for review after de-identification. Semistructured interviews followed a guide developed and pilot tested by J.S.L. and L.E.R.

Data Analysis

A grounded theory approach guided coding and thematic analysis.^19,20 L.E.R. trained ten research assistants to complete independent first-round coding. Coding pairs met with the third reviewer (L.E.R.) to finalize consensus. Then, N.S.D. and L.E.R. reviewed the codes independently to unify language across the codebook and identify recurring themes within and between participant groups. A particular theme is reported if most unique participants (≥50%) identified it. After completing planned interviews, the sample demonstrated saturation. Therefore, no further interviews were necessary. Participants did not provide feedback on findings. Finally, J.S.L. and L.E.R. independently explored VON’s PBPs to consider alignment of themes with PBP domains. Theme assignment reached consensus.

RESULTS

Most respondents across all three groups were between the ages of 30–40 (47%) and 40 + (42%), female (84%), non-Hispanic White (79%), and held a postgraduate degree (95%). Families primarily spoke English (83%). Family households split evenly between 3–4 (50%) and 5 + (50%). Five families (83%) lived in suburban areas. Heads of households from all families (100%) reported being married or partnered. Most family members (67%) reported being employed full-time. All families (100%) reported earning a household income over $80,000 (Table 1).

Table 1.

Demographics of Study Participants

Demographic	Total (N = 19)	Family (n = 6)*	Content Experts (n = 4)	Staff (n = 9)
Age, y
20–30	2 (11%)	1 (17%)	0	1 (11%)
30–40	9 (47%)	5 (83%)	0	4 (44.5%)
40+	8 (42%)	0	4 (100%)	4 (44.5%)
Sex
Female	16 (84%)	5 (83%)	4 (100%)	7 (78%)
Male	3 (84%)	1 (17%)	0	2 (22%)
Race/ethnicity
Non-Hispanic White	15 (79%)	5 (83%)	3 (75%)	7 (78%)
Non-Hispanic Black	1 (5%)	0	1 (25%)	0
Hispanic/Latinx	1 (5%)	0	0	1 (11%)
Asian-American	2 (11%)	1 (17%)	0	1 (11%)
Highest education
Four-year college	1 (5%)	1 (17%)	0	0
Postgraduate degree	18 (95%)	5 (83%)	4 (100%)	9 (100%)
Primary language
English	—	5 (83%)	—	—
Language other than English	—	1 (17%)	—	—
No. people in household
3–4	—	3 (50%)	—	—
5+	—	3 (50%)	—	—
Neighborhood type	—
Not suburban	—	1 (17%)	—	—
Suburban	—	5 (83%)	—	—
Marital status
Married or partnered	—	6 (100%)	—	—
Work status
Full-time employed	—	4 (67%)	—	—
Part-time or unemployed	—	2 (33%)	—	—
Annual household income
>$80,000	—	6 (100%)	—	—

^*One family participant was joined by their spouse for the interview. Their demographics differed only by sex and employment status; the spouse’s demographics are not reported in the table.

Three high-level themes emerged: (1) barriers to family participation, (2) unmet needs of participating families, and (3) benefits of program participation (Table 2). Four themes surfaced within high-level themes: (1) care coordination, (2) framing of care delivery, (3) patient-level care factors, and (4) postprogram transitions and future needs (Fig. 1). There was general agreement that the program provided appropriate expertise for the preterm population and that longitudinal monitoring was beneficial. Most respondents indicated a need for better assessments of the social and structural determinants of health and more robust family engagement. They also noted that the program’s purpose was unclear. Respondents identified specific needs that were not being met during the critical transitions from NICU to HRIF care and then from the HRIF program to school age services. Families indicated a need for additional support, particularly with the transition from early intervention to the public school system. In contrast, staff generally endorsed support, particularly during the transition from Early Intervention to the public school system, and expressed positive perspectives on these transitions. Finally, families, staff, and content experts noted that the program’s multidisciplinary structure is a strength. However, most respondents highlighted unmet needs for provider communication, care coordination and navigation, and program follow-through.

Table 2.

Themes and Subthemes Related to Barriers to Participation, Unmet Needs of Participating Families, and Benefits of Program Participation

Barriers to Participation			Unmet Needs of Participating Families		Benefits of Program Participation
Participant Group	Exemplar Quote		Participant Group	Exemplar Quote	Participant Group	Exemplar Quote
Category: Care coordination
Theme: Insufficient care coordination			Theme: Accountability in family follow-through		Theme: Collaboration between services
Content experts [2/4], Staff [5/9]	“Looking at the reports, like the survey of children with special health care needs - they’re not getting the care coordination.” - Content Expert (ID5)		Staff [6/9]	“There is this group of kids who get lost to follow-up, where they have a lot of needs and it’s just kind of trying to figure out how the clinic can best serve them and get them back in, so that we can help to address those needs.” - Staff (ID8)	Family [4/6], Content Experts [3/4], Staff [6/9]	“If there are other doctors that are seeing [our patients] for whatever his or her medical needs are, including the pediatrician, we kind of form the glue that kind of holds everything together.” - Staff (ID9)
Subtheme: *Need for inter-service community link			Theme: Collaboration between services		Subtheme: Collaboration with other subspecialties in an academic pediatric center
Content Experts [2/2]	“You want to be affiliated and know other programs, so you can cross-refer [within the community] and have more resources.” - Content Expert (ID1)		Family [4/6], Staff [9/9]	“The one thing we could offer that we’re not doing is those combined specialty appointments, which some places have.” - Staff (ID11)	Family [3/4], Staff [5/6]	“We were going to [this hospital] for all of his follow-ups anyways...for pulmonary, for ophthalmology, for cardiology. So that…made it easy.” - Family (ID16)
Subtheme: Need to improve referral process			Subtheme: Improved collaboration with Early Intervention		Subtheme: Collaboration with Early Intervention
Staff [3/5]	“The provider has write the referral, the referral has to be in the system before the family can call...it’s not automatic.” - Staff (ID14)		Family [3/4], Staff [6/9]	“If [the program] could reach out to Early Intervention, then [parents] can get a more like collaborative conclusion about a lot of things. That would definitely be more helpful. Otherwise…it’s too many chefs in the kitchen.” - Family (ID7)	Content Experts [3/3]	“[High-risk infant follow-up programs] offer education and anticipatory guidance, for [services] like Early Intervention.” - Content Expert(ID3)
			Theme: Program navigation		Theme: Effective care coordination
			Staff [8/9]	“[The program] is just easier to navigate for some families than others.” - Staff (ID4)	Staff [5/9]	“We function as a high-risk coordination of care center for these families.” - Staff (ID4)
Category: Framing of Care Delivery
Theme: Lack of provider continuity			Theme: HRIF program cannot meet all needs		Theme: Expertise with premature population
Family [4/6], Staff [5/9]	“Often these types of programs do work in isolation…I think having consistency, and having a familiar face can be really helpful.” - Content Expert (ID3)		Staff [6/9]	“I think that different families come with different needs, like food insecurity, housing insecurity, utility insecurity...I think that those may not be addressed in [HRIF]. I’m not sure that they should be…Families have a primary pediatric provider, they should have other resources at their disposal that can help them address some of those other needs.” - Staff (ID4)	Family [6/6], Staff [9/9]	“I think it’s useful to families, especially in those early years, to have a set of specialists who know preemies…more than the general pediatrician.” - Staff (ID11)
Theme: Needs beyond social work			Subtheme: Need to increase efficiency		Subtheme: Concrete neurodevelopmental assessments by gestational age
Content Experts [3/4], Staff [8/9]	“Some social workers we’ve had really took on more of a coordination role - they helped the clinic coordinator a lot and so did some of those pieces. Our last social worker was much more interested in using her clinical skills…like psychosocial risk assessments, really helping out with tying to resources.” - Staff (ID15)		Staff [5/6]	“We can’t do it all. We need the basics…making sure that we’re working on the scheduling, working on the time efficiency.” - Staff (ID12)	Family [3/6], Staff [5/9]	“They tell me for each age level…what they’re expecting, what the milestone is. It’s very easy to understand development without creating more anxiety.” - Family (ID7)
Subtheme: Current staffing is insufficient			Theme: Unclear program purpose		Theme: Multidisciplinary nature of program
Staff [8/8]	“We need additional support staff…whether that be family engagement or a patient navigator or…maybe it’s more social work. Someone to fill that role because one social worker can’t do it all.” - Staff (ID9)		Family [3/6], Staff [7/9]	“I didn’t understand what [HRIF] was until after our second appointment there. I thought it was the infant portion of developmental medicine.” - Family (ID6)	Family [3/6], Content Experts [3/4], Staff [6/9]	“I love the fact that…you were put in one room and everybody came to you. You didn’t have to go to different departments for all of the different specialists.” - Family (ID16)
Theme: Need for self-reflection in the field			Subtheme: Need distinction between HRIF and Early Intervention		Theme: Positive effect of family engagement on care
Content Experts [2/4]		“I think there is a lack of willingness within the medical profession…to scrutinize and question one’s own practices as anything but objectively correct.” - Content Expert (ID2)	Staff [4/7]	“Parents always ask, ‘How is this different from Early Intervention? And why does my kid need to come here if they’re being followed [by EI]?” - Staff (ID8)	Content Experts [3/4], Staff [6/9]	“When parents are engaged, the baby’s development is so much better…the family is important to the success of the child.” - Staff (ID9)
Theme: Structural marginalization					Subtheme: Importance of family voice
Content Experts [2/4], Staff [7/9]	“I think that [our clinic] is a space, by design, that is...welcoming and comforting to white families that are upper middle class.” - Staff (ID4)				Content Experts [3/3]	“An inclusive model actively looks for opportunities to center the voice of families and welcome them into leadership.” - Content Expert (ID2)
Subtheme: Lack of an equity lens					Subtheme: Need for structural investment
Content Experts [2/2]	“We need to make sure [we] do everything [we] can to explicitly dismantle that power structure…never mind the very basics of having language accessibility and removing any structural barriers to getting to appointments.” - Content Expert (ID2)				Content Experts [2/3]	“And to make family engagement sustainable, it’s about making sure that clinicians and hospitals invest in putting those supports in place.” - Content Expert (ID3)
Category: Patient-Level Care Factors
Theme: Appointments are long			Theme: Assessment and support of developmental needs for school-aged children		Theme: Assessment and support of families
Family [3/6], Staff [6/9]	“I spend a lot of time talking to a lot of people... it was emotionally and timewise exhausting.” - Family (ID6)		Staff [5/9]	“There are kids…once they’re hitting grade school, kids that we thought that were developmentally normal, are actually now having a lot of issues. And those would be kids that probably would have been discharged from routine follow-up and now are needing to re-engage somehow.” - Staff (ID9)	Family [5/6], Staff [9/9]	“It’s one thing to get assessed by your pediatrician and asked questions and another to go to a clinic that specializes in children like your own.” - Family (ID18)
Theme: Poor communication			Theme: Assessment and support of social determinants of health		Subtheme: Supporting developmental milestones
Content Experts [3/4], Staff [8/9]	“I don’t think that we do a very good job with communicating… what our real concerns are, or, what we think needs to happen, to families.” - Staff (ID15)		Content Experts [3/4], Staff [9/9]	“We could be doing more psychosocial risk assessments, like at the first visit for every family…we should talk about housing insecurity, food insecurity, any problems with homelessness, or any abuse in the family, any problems with...kind of all of the range of issues that we could at least have our eyes on from the beginning and be able to help with.” - Staff (ID15)	Family [4/5], Staff [8/9]	“We have the time to actually go over a lot of developmental milestones that may get missed in [general pediatrician] visits.” - Staff (ID13)
Subtheme: Inaccessible information			Theme: Caregiver mental health support		Theme: Benefit of longitudinal monitoring
Staff [6/8]	“Our communication with [outside providers] is really unidirectional - we do our visit and then send a letter to their pediatrician which is…very old-fashioned. It’s confusing to me as a provider writing the note after clinic… how is this information going to get to anybody?” - Staff (ID8)		Content Experts [3/4], Staff [5/9]	“We’re thinking more about how to support families with mental health…but it takes a little bit of pushing outside of our normal routine and roles within the clinic.” - Staff (ID15)	Family [5/6], Staff [8/9]	“[The HRIF program] follows her throughout the early years of her life and can see the actual progress of her, physically and cognitively.” - Family (ID7)
Subtheme: Lack of clarity			Theme: Connections with other families		Theme: Clear communication
Staff [5/8]	“The program materials we’re using are not going to be clear to a substantial portion of our patients and families.” - Staff (ID15)		Family [4/6], Content Experts [2/4], Staff [8/9]	“They should offer something for families…something as simple as setting up a contact with people who are in the program…and have children around the same age as you with similar issues.” - Family (ID16)	Family [4/6], Content Experts [3/4]	“I would say definitely say communication was clear.” - Family (ID16)
Subtheme: Lack of honesty between families and providers			Theme: Family engagement		Subtheme: Communication between patients and providers
Staff [4/8]	“If you ask a family at the end of a visit, ‘Is this helpful?’, they’re going to say yes because they don’t feel comfortable being honest.” - Staff (ID13)		Content Experts [3/4], Staff [8/9]	“I think a family engagement committee, with a couple families leading the charge, would be very helpful. It gives a different and unique perspective on what the struggles are. It’s hugely important.” - Staff (ID9)	Family [4/4]	“When they communicate what [my child] is doing for her age level…it’s a really clear and concrete thing.” - Family (ID7)
			Subtheme: Families seem uncomfortable disclosing needs		Theme: Longitudinal care
			Staff [5/8]	“If you ask the family at the end [of a visit] ‘Was this helpful?’, they’re going to say yes because they feel like they need to.” - Staff (ID13)	Family [5/6]	“The [neonatologist] knew us in our worst state…so it was nice for us for him to be able to see [our child] grow and things like that.” - Family (ID16)
					Theme: Program is meeting current needs
					Family [5/6]	“Yes, [our child]’s needs are definitely being met.” Family (ID18)
					Theme: Successful introduction of program at NICU discharge
					Staff [5/9]	“The families who come in knowing the importance of developmental monitoring…that has to do with whatever connection has been made [with the program] prior to discharge.” - Staff (ID8)
Category: PostProgram Transitions and Future Needs
			Theme: Support after age 3		Subtheme: Successful transition to future services after program graduation
			Family [4/6], Content Experts [4/4], Staff [8/9]	“While I think that zero to three is appropriate for most families, I think it is challenging for families who are going to need additional follow-up, beyond a pediatrician, after three.” - Staff (ID9)	Staff [5/9]	“There are many great options for families in terms of where’s they’re getting their follow-up [after HRIF].” - Staff (ID9)
			Theme: Support for obtaining school-based services		Subtheme: Successful transition to developmental medicine
			Family [3/6], Staff [5/9]	“I feel like we’re missing the meat of what would help families through…the transition to school is so important, and seeing how they’re doing in preschool.” - Staff (ID13)	Staff [4/5]	“In terms of resources, there are a number of kids that we do transition over to the developmental medicine clinic and those providers are fantastic” - Staff (ID13)
			Theme: Transition to future services		Subtheme: Successful transition to school-based services
			Family [4/6], Content Experts [3/4], Staff [5/9]	“We need more expertise in the transition process.” - Family (ID17)	Staff [3/5]	“[The developmental medicine] team runs a group about transitioning from Early Intervention to an IEP program and the school system…that is very popular with parents.” - Staff (ID15)

Subthemes are italicized directly beneath their associated main theme.

Fig. 1.

Themes with subthemes categorized as weaknesses and strengths. It displays 4 main themes and their subthemes divided into weaknesses and strengths.

Barriers to Family Program Participation

Care Coordination

Content experts and staff noted there was insufficient care coordination. Specifically, staff felt that the referral process needed improvement, and content experts identified the need for an inter-service community link through which HRIF, Early Intervention, and others could communicate more frequently.

Framing of Care Delivery

Families and staff noted a lack of continuity of provider care. Both content experts and staff reported that staffing was insufficient to address health-related social needs. Content experts and staff also discussed structural marginalization. Specifically, content experts described the field as failing to use an equity lens in HRIF clinical care and research.

Patient-Level Care Factors

Family and staff reported that appointments were long and emotionally exhausting. Content experts and staff mentioned poor communication, with staff highlighting a lack of clarity and accessibility in end-of-visit resources and concerns that families were not honest in reporting the program’s usefulness or their needs.

Unmet Needs of Participating Families

Care Coordination

Staff identified a need for greater accountability among HRIF staff, including more frequent follow-up, tailored resources for families unable to follow recommendations, and support with program navigation. Both families and staff discussed the need for greater collaboration across services, specifically with community-based Early Intervention service providers.

Framing of Care Delivery

Staff addressed the idea that the program cannot meet all needs to increase visit efficiency. Both families and staff reported that the program had an unclear purpose, specifically the challenge of distinguishing it from community-based Early Intervention developmental support services.

Patient-level Care Factors

Staff felt patients might need ongoing developmental evaluation after entering school-based services. Content experts and staff emphasized the importance of addressing social determinants of health and caregiver mental health. Families, content experts, and staff mentioned a need to facilitate connections between families in similar situations to mitigate isolation and improve mental health. Content experts and staff discussed the need for greater family engagement (eg, a focused effort to include the family voice) to ensure therapeutic recommendations were possible and acceptable to families.

Postprogram Transitions and Needs

Families, content experts, and staff discussed transitions to future services. They noted that transitions to future services, in the hospital and community, were an unmet need. Family and staff specifically mentioned needing support to obtain school-based services.

Benefits of Participation

Care Coordination

Families, content experts, and staff highlighted collaboration between services as a benefit of program participation, specifically with hospital subspecialties and with early intervention programs.

Framing of Care Delivery

All families and staff highlighted expertise in caring for the preterm population as a benefit of participation, specifically noting concrete neurodevelopmental assessments. Families, content experts, and staff noted the benefit of a multidisciplinary program. Content experts and staff noted the benefit of positive family engagement in care. Only content experts described family voice as a specific best practice.

Patient-level Care Factors

Families and staff described assessment, longitudinal monitoring, and support for infants as key, particularly regarding developmental milestones. Families and content experts reported clear communication as a benefit, with all families highlighting the positive impact of clear and effective communication between patients and providers. Only staff reported that introducing the program at NICU discharge improved family engagement in follow-up. In addition to the unmet needs identified above, families felt the program was still sufficient overall for their current needs.

Postprogram Transitions and Future Needs

Only staff discussed the successful transition to future services as a benefit of HRIF. Specifically, they noted the successful transition to developmental medicine and assistance in accessing school services for children needing ongoing support.

Question-specific Themes

All interviewee groups responded to three standard questions (Table 3). First, staff alone noted that the purpose of HRIF was to assess and support families and to provide neurodevelopmental monitoring. Both families and staff said the clinic’s main purpose is to provide expertise in prematurity. For the second question, families, content experts, and staff noted that bringing children to the program offered many benefits, although only content experts and staff specifically mentioned expertise in prematurity. Content experts believed that the continuity of care from NICU to clinic drew families. In contrast, families noted the expectation to participate and the desire to do everything possible for their child. For the third question, all groups noted a need for ongoing assistance after HRIF ends at age 3. Staff and content experts specifically highlighted that families have unmet needs after HRIF ends.

Table 3.

Themes across Consistent Interview Questions

Question	Theme/Subtheme	Participant Group	Exemplar Quote
What do you see as the clinic’s purpose?	Assessing and supporting families	Staff [8/9]	“For most people, we’re there to support the family structure so that that family structure can then...best support the baby.” - Staff (ID9)
	Developmental monitoring	Staff [7/9]	“Out goal as a clinic is to increase screening for neurodevelopmental or functional impairment of high-risk infants who had stays in the NICU.” - Staff (ID10)
	Expertise with premature population	Family [4/6], Staff [5/9]	“It’s a way to get comprehensive, almost like support services for your child who is born prematurely.” - Family (ID16)
Why did you bring your children to HRIF/ why do families bring their children to HRIF?	Benefits to participation	Family [6/6], Content Experts [3/4], Staff [6/9]	“It’s a wonderful thing for both the kid and the community.” - Family (ID16)
	*Expertise with premature population	Key Informant [2/3], Staff [6/6]	“Once it’s explained like that, about our expertise and focus, parents are very interested because…they see it as a benefit.” - Staff (ID8)
	Continuity from NICU to clinic	Content Experts [2/4]	“I think having consistency, and having a familiar face, or knowing kind of what the expectation is for the next phase, is a real draw for families.” - Key Informant (ID3)
	Expectation to participate	Family [3/6]	“There is this expectation, when you hear about it in the hospital, that you should be doing this for your premature child.” - Family (ID19)
	Wanting to do everything possible for your child	Family [3/6]	“We really felt like we would take every service that’s offered and make sure we’re support [our child] in whatever way we can.” - Family (ID7)
Is the current age range (zero to three) the right focus for HRIF?	Current age range (zero to three) is appropriate	Staff [7/9]	“The three year mark as a transition point makes sense, at least in our state…since between three to four you can go to preschool, you can go into the school system if you have additional needs.” - Staff (ID4)
	Extend age range on a case-by-case basis	Family [3/6], Content Experts [4/4], Staff [8/9]	“When [our child] turned three, there were still a lot of potential issues going on, and it would have been nice to stay in the program until those were more resolved.” - Family (ID19)
	Unmet needs after age 3	Content Experts 4/4], Staff [9/9]	“There’s this group of children that we know still have needs when they graduate from us, and those vulnerabilities continue to come up later into childhood.” - Staff (ID10)

Subthemes are italicized directly beneath their associated main theme.

Mapping Study Themes to PBPs for Follow-through Domains

All six domains of VON’s PBP for Follow Through aligned with at least one study theme (Table 4). Domains I (culture of equity) and VI (advocacy) aligned with themes of structural marginalization. Domain II (social risks and intervention) aligned with themes related to the social determinants of health and family support. Domain III (transition to home) aligned with themes of postprogram transitions and clarity of program purpose. Domain IV (support families) aligned with program benefit themes, specifically the multidisciplinary approach, longitudinal monitoring, and preterm expertise. Domain V (CQI efforts) aligned with themes of improving efficiency, provider continuity, and communication.

Table 4.

Crosswalk of Potentially Better Practices (PBP) for Follow-Through from the Vermont Oxford Network and Study Themes

PBPs for Follow-through Domain	Theme	Subtheme
I. Promote a Culture of Equity	Address structural marginalizationA	Integrate equity lens to HRIF*
II. Identify Social Risks of Families and Provide Interventions to Prevent and Mitigate those Risks	Identification and support of social determinants of healthB
	Caregiver mental health supportB
	Making connections with other familiesB
III. Take Action to Assist Families after Discharge (Transition to Home)	Unclear program purposeC
	Insufficient care coordinationD	Need to improve referral process
	Accountability in family follow-throughE
	Collaboration between servicesF
IV. Maintain Support for Families through Infancy	Multidisciplinary nature of programG
	Benefit of longitudinal monitoringH
	Expertise with premature populationG
	Transition to future servicesI	Referral to developmental medicine and school-based services
V. Develop Robust Quality Improvement Efforts to Ensure Equitable, High-Quality Hospital and Follow-through Care to all Newborns by Eliminating Modifiable Disparities	Appointments are longJ
	HRIF cannot meet all needsC	Increase efficiency
	Lack of provider continuityA
	Communication between patients and providersH
	Poor communication between providersJ	Inaccessibility of written materials
VI. Advocate for Social Justice at the Local, State, and National Levels	Address structural marginalizationA	Integrate equity lens to HRIF

Categorization of theme per Table 2: A, barrier to participation, framing of care delivery; B, unmet needs of participating families, patient-level care factor; C, unmet needs of participating families, framing of care delivery; D, barrier to participation, care coordination; E, unmet needs of participating families, care coordination; F, benefit of participation, care coordination; G, benefit of participation, framing of care delivery; H, Benefit of participation, patient-level care factor; I, benefit of participation, postprogram transitions and needs; J, barrier to participation, patient-level care factor.

DISCUSSION

Neurodevelopmental follow-up for high-risk infants is a recommended standard of care after NICU discharge.³ Yet, existing literature on clinical follow-up for high-risk infants documents low overall rates of participation and significant inequities by race, ethnicity, and neighborhood (as created by systemic barriers).^13–15 Administrative hurdles abound; this creates challenges for making referrals (providers) and subsequent family enrollment in HRIF programs.²¹ Families have also reported barriers, including a lack of transportation, competing time demands, and emotional exhaustion.²² Prior work in this HRIF program explored whether organizational health literacy (OHL) priorities were met, noting that OHL practice was key to providing equitable opportunities and optimal outcomes.²³ The previous study demonstrated many barriers to access, understanding, and use of the program (ie, not meeting OHL objectives) and, importantly, were modifiable by the program (eg, clearer and easier-to-use materials, systems, and processes). Unlike most prior work, this current study explicitly asked about the perceived value of HRIF programs and reasons for participation. The inclusion of strengths-based questions can highlight, reinforce, and demonstrate the benefits of HRIF while identifying opportunities for improvement.

HRIF Value

Study families and staff identified several areas of value in HRIF participation. These included coordination and collaboration between subspecialty and service providers (eg, early intervention), expertise in supporting preterm infant development, and the usefulness of a life course perspective in approaching the transition from NICU to home. In addition to positive perspectives, themes suggested several programmatic weaknesses. Family and staff noted that HRIF’s purpose should be clearly defined from the outset. Staff lamented that many families lost to follow-up likely had unmet medical, social, or mental health needs, which aligns with prior work identifying family-related risk factors for decreased HRIF attendance.^13–15 Such families lost to follow-up, that is, HRIF nonattendees, were not part of this study focused on the value of attending HRIF. Most interviewees discussed issues that might arise for others, for example, language barriers, but families who did not attend were unable to represent themselves. Families, content experts, and staff signaled a need for developmental support beyond HRIF (ie, for 3-year-olds), including more robust support for transitioning to the school system and for future services. Staff emphasized a need for improved visit efficiency.

HRIF: Moving CQI Forward for Equitable Care and Optimal Outcomes

Building on existing successes while addressing identified pain points is the hallmark of CQI. Yet, quality improvement approaches have not been applied routinely or systematically to HRIF. This is puzzling given the long history of CQI surrounding inpatient neonatal medicine. In 2021, Litt and Hintz argued that a quality improvement lens could be feasible, relevant, and impactful in HRIF, just as in NICU care.¹⁶

HRIF programs lack (1) professional standards for delivering high-quality, high-value, and equitable follow-up care and (2) universally accepted metrics for implementation and CQI efforts. Thus, this study explored The VON’s comprehensive PBPs for Follow Through, which outline evidence-based domains and practices to advance HRIF programs. The PBPs had high synergy with the study’s themes. As such, PBPs were used to explore best practices to advance CQI work until approved professional standards are universally adopted. Although the detailed set of PBPs can be daunting at first, it can support a concrete, evidence-based first step into clinical CQI efforts.

Hypothetical HRIF CQI Example

To illustrate how a program might address gaps in follow-through care using a CQI approach, we present a hypothetical example. Responding to unmet needs in transitions to appropriate medical and educational settings after program discharge identified by families in our study, our SMARTIE aim (specific, measurable, achievable, relevant, time-bound, inclusive, and equitable) might be: “Improve transition planning by increasing successful placement of infants into recommended medical and educational services after discharge from HRIF by 50% over the next 12 months.” Next, the team created a hypothetical key driver diagram outlining the primary and secondary drivers (Fig. 2A). Process measures would be defined by program adherence to a standardized transition process, perhaps:

Fig. 2.

Hypothetical SMARTIE aim example: improving transitions from NICU follow-up. It outlines a hypothetical CQI example to suggest a possible next step for readers based on these findings. The figure has two sections. A, A key driver diagram for improving transitions from NICU follow-up, enhancing family engagement across the life course (eg, preschool, medical team, occupational therapy). The key driver diagram outlines secondary drivers/change ideas, key drivers, and a SMARTIE Aim (Specific, Measurable, Achievable/Ambitious, Relevant/Realistic, Time-bound, Inclusive, and Equitable). B, A hypothetical annotated run chart showing the percentage of families engaging in comprehensive transition planning over time. Hypothetical change ideas are overlaid on the line figure, indicating overall improvements in transition planning and improvements after the implementation of each change idea.

1. All families have a transition planning meeting;

2. All families have a written transition plan; and

3. All families have interval check-ins about progress along the transition plan.

Outcome measures might include (1) identification of all children with ongoing developmental and behavioral pediatric care needs and successful completion of the intake process and (2) having a signed individualized education plan with the public school system at the time of HRIF transition for those with continuing needs. Balancing measures might include (1) number of available clinic transition appointments and (2) waitlist time for the next available clinic transition appointment. Changes to ideas, such as parent anticipatory guidance/provider education, a dedicated transition appointment, and enhanced care coordination, would then be implemented and iteratively tested in sequential plan-do-study-act cycles, with progress tracked monthly using run charts (Fig. 2B).

Limitations

Many coders handled the large sample of transcript text, and despite strict adherence to best practices and extensive consensus checks, coding discrepancies are possible; however, these would likely lead to an undercount of inductive themes. In addition, the sample was not diverse (eg, in terms of gender, race/ethnicity, education level, and primary language). As such, it is not possible to draw strict conclusions about a larger group. Future work must expand understanding of the barriers to attending HRIF; however, the stated objective of this work was to elucidate the value of HRIF participation. The sample reflects the average family that attends this HRIF program. Notably, LER’s lived experience supported her ability to connect with interviewees. Yet, it is still possible that interviewer bias occurred despite LER’s rigorous training and deep experience in qualitative interviewing, in which the standard practice is to disclose any proximity to the subject and to actively reflect on and practice impartiality. Additionally, N.S.D. and J.S.L. brought their experiences as providers of neonatal medical care and HRIF, which may have influenced the structure and emphasis of themes and their schema. Nonetheless, study themes aligned with evidence-based VON PBPs. Finally, most interviews were completed in the initial months of the worldwide COVID-19 pandemic (2020). Associated personal or professional stress may have affected the interviewee’s responses.

CONCLUSIONS

Families, content experts, and staff identified several valuable components of HRIF care. VON’s PBP for Follow-Through were synergistic and highly aligned with the study themes. As such, they can provide many evidence-based practices for HRIF programs to explore as part of CQI work. Using the PBPs to identify high-value CQI targets could be an important next step in HRIF program improvement activities. Future work must demonstrate that this methodology can lead to sustainable improvements in post-NICU HRIF care.

ACKNOWLEDGMENTS

The authors thank their incredible research assistants for their dedication to rigorous data coding: Aharisi Bonner, Alejandra Cantualdana, Charmaine Chan, Sharma Joseph, Claudia Martínez, Brandon McBay, Elizabeth Neylan, Sarah Page, and Meg Salvia. Thanking them does not imply they endorsed the data or conclusions presented. Coauthors Drs. Chwa and Dalvie also participated in the interview analysis.