The Neonatal Follow-up Program Resilience After Infant Substance Exposure (NFP-RISE) of Children’s Hospital of Philadelphia (CHOP)

The Neonatal Follow-up Program Resilience After Infant Substance Exposure (NFP-RISE) of Children’s Hospital of Philadelphia (CHOP)

The Neonatal Follow-Up Program Resilience after Infant Substance Exposure Neonatal Follow-Up Program (NFP-RISE) of Children’s Hospital of Philadelphia (CHOP) relies on strong collaboration between the multidisciplinary clinical team at CHOP and several community partners. The program opened in February of 2021 with the recognition of need for a specialized follow-up program for infants exposed to opioids and other substances during pregnancy. To build the program, the leadership at NFP-RISE initiated listening sessions with hospital and community pediatricians, neonatologists, family practitioners, and other community partners. The goal was to develop a program that uses a strength-based non-stigmatizing approach to address needs of infants and families for long-term neurodevelopmental follow-up care.

Operating within CHOP, the NFP-RISE clinic provides specialty comprehensive care to infants and birth parents in a variety of family structures, including working with birth parents in recovery, family supports, kinship, and foster caregivers. The clinic leverages the existing Neonatal Follow-up Program (NFP) infrastructure, tools, staff, and assessments, and specializes in providing care to infants who are identified as medically at risk for developmental issues.

Families are introduced to the NFP-RISE clinic during the perinatal period through referrals from hospitals and partner health care providers. The clinic works to increase its network of adult providers and neonatologists who can identify families exposed to substances during pregnancy. The vision for prenatal engagement is a longitudinal relationship focused on anticipatory guidance about preparing families for parenthood and the perinatal services that will be offered to them. This relationship with the parent is championed by a care navigator who is a certified peer recovery specialist.

Follow-up Clinic with a Multidisciplinary Team

With an intention to serve a specific population, the NFP-RISE team has assembled clinical personnel and an advisory board that includes community representation and people with lived experience. The clinical team has been intentional about developing a small collection of dedicated staff. The current multidisciplinary team includes a general pediatrician, a neonatologist, a social worker, a care navigator, and a physical therapist, many of whom also serve on the advisory board. The families also have access to the rest of the clinic infrastructure, standardized assessments and personnel, including psychologists and occupational therapists. The overarching goal of the care team is to use trauma informed care approaches to accurately understand families’ needs.

The Therapeutic Alliance

The first visit to the clinic takes place within the first 6 weeks after an infant is discharged from the hospital. As preparation for the first visit and to ensure the team can support the caregiver-infant dyad, the clinic collects the family health history and records from the birthing center, the pediatrician, and other primary care providers. The NFP-RISE team developed scripts to introduce themselves and the clinic’s focus on patient- and family- centered care. Strength-focused scripts can establish a trusting foundation that helps the clinical team identifying the health goals the family has for their infants. Using motivational interviewing principles, the team learns about the family’s health literacy levels. This approach is essential to increasing family medical knowledge, empowering them to believe they can achieve their health goals, and appropriately communicating medical care priorities. The first visits have more time allocated to them so the team can answer questions and allay any concerns about their infant’s health while also developing the therapeutic alliance with the parents/caregivers.

Anticipatory Guidance

Discussions with families on various anticipatory guidance topics are incorporated in each visit and the content is delivered in a stepped method. During a first visit with the NFP-RISE team, the physicians give verbal and written informational support on how to care for an infant with prolonged transitions after substance exposure, including non-pharmacological neonatal withdrawal management strategies. Staff use active listening skills to respond to questions from families and caregivers and provide information that is specific to the infant’s needs and family’s health goals.

During the first visit to the clinic, the physician and physical therapist perform standardized neurological and sensory assessments and observe the infant’s movements and behavior. The physical therapist teaches the families different positions and massage techniques that can increase the infant’s comfort level. The developmental surveillance also determines if an infant is demonstrating signs of any motor delays. Also discussed are safe sleep practices, nutrition, and other strategies that support the infant’s development and positive parentings practices.

The 3-months pediatric health supervision visit includes standardized neurological and developmental assessments to clarify any developmental differences or concerns. The clinical team is focused on helping families understand what the long-term risks might be around prenatal substance exposure, while sharing unbiased medical knowledge and addressing the family’s concerns. The NFP-RISE team emphasizes that risk is not the same as a chronic disease and provides reassurance that an infant may not experience developmental differences. During the 3- and 6-month visits the team continues to strengthen the therapeutic alliance with the family, with a focus on healthy development. This provides support for building a strong parent-infant dyad attachment, especially when an infant has had a prolonged stay in the neonatal intensive care unit (NICU), or a difficult transition. The team is also attentive in communicating with kinship, or foster caregivers, and case workers when planning the health supervision visits and specialty care for patients in foster care.

The team proactively discusses attention development without inferring the infant will experience attention deficits. Since attention differences are commonly described in older toddlers and school-age children who had prenatal substance exposure(s) the NFP-RISE developed specific anticipatory guidance content around infant attention development.

Clinic-based Processes

The leadership at NFP-RISE believes that process-oriented manuals are critical to program sustainability, standardization of care, and its continuance should a clinician(s) be unavailable. The NFP-RISE team developed a detailed Standard Operating Procedure manual, which is a living document updated as needed. A catalog of dot phrases offers easily accessible language to populate into patient notes and adds another point of continuity of information. The NFP-RISE team begins each clinic with a case review of scheduled patients to have a shared understanding of any anticipated obstacles and to coordinate care. All clinic personnel focus on using non-stigmatizing language throughout, both “on-stage” and “off-stage.”

Each patient visit has a 3-pronged approach to address social, developmental, and medical needs. This strategy ensures consistent subspecialty neurodevelopmental care and assessment over time, consistent with the overarching focus of the NFP clinic. Also built into each clinic visit are screenings for depression and post-traumatic stress disorder (PTSD) for birth parents and family members caring for the infant.

Within visits, the NFP-RISE team provides an open space to discuss the birth parents’ recovery and treatment needs. The team is ready and able to facilitate referrals to adult health care services and prescribers of medication treatment for opioid use disorder (OUD). The team uses a pragmatic approach to infant health and developmental risks based upon medical literature and epidemiological and environmental factors associated with substance use, and not solely based within an individual family context. Because research shows increased risk of individuals having a recurrence of use and related fatalities by overdose during the perinatal period and first year after delivery, the NFP-RISE team emphasizes family-based harm reduction supports, such as overdose prevention and reversal and infectious disease prevention. Additionally, while safe sleep is always important, it is particularly critical in situations when prescribed medications or substance use may alter a caregiver’s sleep patterns. In the context of developmental capabilities and exploratory ingestions during infancy, The NFP-RISE team also provides anticipatory guidance on the role of safe medication storage. These topics are brought up in discussions with families to emphasize the need of transparent communication for finding optimal solutions for the families.

Care Accessibility

To overcome any structural barriers for an appointment, the NFP-RISE clinic coordinator, or the social worker, connects with families several days before and arranges transportation options when needed. The providers create a flexible and adjustable clinic schedule to partner administrative duties with clinical appointments and to meet patients’ needs.

A typical visit has multiple care providers in the room with families. A major goal is to minimize the complexity of medical knowledge by rephrasing and adjusting medical language to best communicate medical information while engaging a family and supporting their health literacy.

Part of medical care accessibility is providing guidance to patients and families and additionally, giving them necessary tools. The NFP-RISE clinic offers developmental toys and books to families and discusses the importance of reading and its benefits. The clinic also provides families with infant-safe massage oil so they can perform at home exercises learned at the clinic.

The team has collegial relationships and collaborations with many community-based organizations to whom they provide referrals and warm hand-offs, so patients can access additional services. Dot phrases within the electronic medical records (EMR) notes contribute to a consistency of referral information for families.

Financing

The NFP-RISE clinic operates with a dedicated 2-years of startup institutional funds including financial renumeration for clinical staff and support services. All billing is time-based with no additional built modifiers. The NFP-RISE clinic engages closely with the CHOP Policy Lab to gain insight into potential implications of the caregiver-infant dyad care reimbursement opportunities at both the State and Federal level, particularly for innovative care.

Evaluation

The clinical care team, advisory board, and institutional divisional leaders have identified consensus metrics to build out monitoring dashboards to support structured measurement of clinical processes and services. The clinic is engaged in processes to collect narratives from families served to clarify value and areas of improvement within their services. The clinic believes it is equally important to understand why families did not choose to be a part of the clinic so is simultaneously collecting input from families who are referred to NFP-RISE but who do not receive services. The NFP-RISE team is exploring a family advisory board initiative to provide substantial and useful feedback.

Advice to Other Practices

The NFP-RISE team members embrace and respect the many community organizations with years of experience serving marginalized and disenfranchised communities and are constantly learning from their expertise. The team at NFP-RISE suggests clinical programs interested in serving similar populations, need to integrate and value lived experience expertise, taking care to not tokenize these voices. Novel programs must also maintain transparency in development of their approaches and be willing to make program course corrections.

The NFP-RISE team members approach their patients with humility and a commitment to serve, and not save them. They recommend entering patient interactions with questions about how they can help and support, rather than entering with a presumption of having all the answers. They continuously remind each other to perform their work gently, with grace, humility, and generosity to themselves and to the infants and birth parents in recovery.