Premature birth and serious newborn illness can leave infants medically stable enough to go home while still facing elevated risks to their development, movement, hearing, vision, feeding, and early learning. Regional high-risk infant follow-up programs, commonly known as HRIF clinics, are designed to detect those problems early and connect families with therapies and specialist care. Yet the success of these programs depends on a deceptively simple question: can families return for the appointments? A mixed methods study by Sugimoto, Murphy, Kendrick-Allwood and colleagues examines that question by combining attendance data with caregivers’ own accounts of what makes participation possible, difficult, or impossible.
Published in the Journal of Perinatology, the study focuses on a regional HRIF program and investigates both measurable factors associated with attendance and the lived experience behind those patterns. That combination is important because an appointment marked as “missed” does not explain why it was missed. A family may be unable to travel across a large region, may not receive a reminder, may struggle to find childcare, or may believe that follow-up is unnecessary when a baby appears healthy. By pairing program-level information with caregiver perspectives, the researchers seek to move beyond a simple compliance narrative and toward a more realistic understanding of engagement.
HRIF programs typically serve infants born very prematurely, infants with very low birth weight, and newborns who experienced complications requiring intensive medical care. Their purpose is preventive as much as diagnostic. A clinician may assess muscle tone, reflexes, language, feeding, behavior, and developmental milestones, then compare the child’s progress with expected patterns. Early identification matters because the infant brain undergoes rapid growth during the first years of life, a period when physical, developmental, and family-centered interventions may have their greatest effect. Follow-up can also reveal problems that are not obvious during routine pediatric visits, including subtle motor delays, difficulties coordinating swallowing and breathing, or emerging communication challenges.
The study’s central concern is that the infants most likely to benefit from specialized monitoring may also be the ones whose families face the greatest barriers to attending. Care after a complicated birth can involve multiple specialists, medication schedules, home equipment, insurance or referral requirements, and repeated hospital visits. Caregivers may be recovering physically and emotionally from a traumatic delivery while simultaneously learning how to manage a medically fragile infant. Employment, transportation, housing instability, language differences, and the availability of other children’s care can all influence whether a scheduled visit is realistic. In a regional program, distance adds another layer: the longer the journey, the more a routine appointment can become an expensive and time-consuming undertaking.
The researchers explore these challenges through a mixed methods design, an approach that links quantitative and qualitative evidence rather than treating them as competing forms of knowledge. Attendance patterns can show which families are more likely to complete visits, miss them, or discontinue follow-up. Caregiver interviews or other qualitative feedback can then help explain the mechanisms behind those patterns. This is particularly relevant in pediatric care, where the “patient” is an infant but the practical decisions are made by adults whose circumstances shape every stage of treatment. The study therefore treats caregiver experience as clinical information, not as an optional commentary added after the statistical analysis.
Across the issues examined, practical access emerges as a major determinant of participation. Appointment timing, travel distance, transportation, parking, and the ability to coordinate several services can make the difference between attending and canceling. Families may also face uncertainty about how long an evaluation will take or what will happen during the visit. For caregivers balancing work, school, other children, or limited paid leave, an appointment that requires an entire day away from home may be difficult even when they strongly support follow-up. These barriers are not necessarily signs of low motivation. They reflect the infrastructure surrounding care and the resources required to use it.
Communication and the perceived value of the program are equally important. Caregivers are more likely to participate when they understand why HRIF follow-up is recommended, what developmental risks are being monitored, and how the visit could change the child’s care. Conversely, a family may interpret a thriving infant’s appearance as evidence that specialist follow-up is no longer needed, particularly if the hospital discharge process did not clearly explain the purpose of continued surveillance. Confusing referral pathways, missed reminders, difficulty reaching clinic staff, or inconsistent information from different providers can weaken engagement. Clear explanations delivered before discharge and reinforced through accessible reminders may therefore be as important as the clinical expertise available at the appointment.
The caregiver accounts also highlight the relational side of attendance. Families may be encouraged when clinicians listen carefully, respect cultural and family preferences, explain findings in understandable language, and recognize the stress associated with caring for a high-risk infant. Trust can make a demanding visit feel worthwhile, especially when caregivers leave with concrete guidance rather than only a list of concerns. Flexible scheduling, help with transportation, coordination with other appointments, interpreter access, and assistance from social workers can reduce the practical burden. In this context, a facilitator is not merely a convenience; it is an intervention that changes whether specialized developmental care can be reached.
The findings have implications beyond one regional clinic. If attendance is evaluated only through the number of completed appointments, health systems may conclude that families need more reminders or stronger instructions. The study suggests a broader response: programs should examine how referrals are made, how families are contacted, whether appointment systems accommodate real-life constraints, and how clinicians explain the purpose of long-term follow-up. Strategies may include scheduling visits before discharge, offering coordinated or same-day services, using multiple communication methods, providing transportation support, and designing telehealth options when a physical examination is not required. Such measures would not replace in-person developmental assessment, but they could preserve contact when travel or logistics temporarily prevent it.
The importance of the research extends to health equity. Families do not begin the follow-up process with equal time, money, transportation, digital access, language support, or confidence navigating medical institutions. When those differences determine who receives early developmental surveillance, missed visits can become a pathway through which broader social inequalities affect child health. By asking caregivers what helps and what stands in the way, the study reframes HRIF participation as a shared responsibility between families and health systems. The goal is not simply to persuade more caregivers to attend, but to build programs that are easier to understand, easier to reach, and more responsive to the realities of life after a high-risk birth.
The study ultimately presents attendance as a modifiable feature of care rather than a fixed characteristic of families. Infants leaving neonatal intensive care often require years of observation, and the value of that observation depends on sustained relationships among caregivers, pediatricians, developmental specialists, and community services. Understanding why families disengage—and what brings them back—can help regional programs design more humane and effective systems. In a field where early recognition may influence the timing of therapy and support, improving participation is not administrative housekeeping. It is a clinical strategy for giving vulnerable children a better chance to reach their developmental potential.
Subject of Research: Factors influencing attendance at regional high-risk infant follow-up programs and caregiver-perceived barriers and facilitators to participation.
Article Title: Engaging families to improve high-risk infant follow-up participation: a mixed methods study
Article References: Sugimoto, C., Murphy, M., Kendrick-Allwood, S. et al. Engaging families to improve high-risk infant follow-up participation: a mixed methods study. J Perinatol (2026). https://doi.org/10.1038/s41372-026-02885-6
Image Credits: AI Generated
DOI: https://doi.org/10.1038/s41372-026-02885-6
Keywords: high-risk infant follow-up, premature infants, neonatal intensive care, developmental surveillance, caregiver barriers, healthcare access, attendance, mixed methods, family-centered care, health equity
