Scaffolding Parenting and Health Development for Preterm Flourishing Across the Life Course

Medical advances over the past 50 years have significantly increased survival rates for the almost 10% of US babies born prematurely to ∼95% for late (32–36 weeks gestational age), 90% for very, (28–31 weeks), and 80% for extremely (<28 weeks) premature infants (see Table 1).^1–9  Although 75% of extremely preterm survivors do not experience major neurodevelopmental disabilities, >50% experience lesser neurodevelopmental challenges in communication, perception, coordination, cognition, attention, anxiety, regulatory, executive function, and academic skills.^10,11  Late premature infants experience more issues than term babies.¹²  There are limited data on the impact of these issues on health and well-being over the life course, but many appear to persist into adulthood.¹³ 

Quality early intervention programs can minimize developmental delays in children at risk and promote learning and adaptive competencies for children with major neurodevelopmental disorders (global developmental delay, autism spectrum, severe hearing loss, and cerebral palsy). The Individuals with Disabilities Education Act guarantees that eligible children aged <3 with developmental delay be provided early intervention services. These services have been historically designed to serve only an estimated 2% to 3% of children. Frequently, eligibility requirements are determined by rigid cut points of established developmental delays (IQ <70) and medical complexities.¹⁴  Though at-risk children are potentially eligible, proactive preventive interventions are frequently delayed until kindergarten entry, with major disparities in access, lack of service integration to meet medical (nutrition, respiratory, sensory, seizures, and sleep) and communication needs, behavior regulation, and parent support.¹⁵  Sequential, domain-specific deficit remediation models (ie, first get through self-mobility; then promote manipulation and fine motor skills; and, lastly, start communication and social behavioral interventions) represent a poor match for families’ articulated needs.¹⁶  Practically speaking, this means that many premature infants are not eligible for intervention services, and when they are, the scope of services available is limited. In addition, services often end at age 3 years, impacting children’s ability to enter school ready to adapt and thrive in the classroom.

Some infants born prematurely face added social environmental challenges, and this combination of social and biological risks can be particularly impactful for development. Of premature infants with developmental delay at 2 years, 75% of those living in severe socioeconomic adversity were not ready for school at the age of 5 years, 6 months, compared with 46% those with higher socioeconomic status (SES). Of those developmentally normal at age 2, 29% of lower SES required special education resources in kindergarten, compared with only 8% of higher SES. Limited evidence suggests that higher SES parents who are ineligible for intervention services and individualized family service plans may be proactively seeking preschool habilitative, behavioral, and early child education, in part, explaining their better outcomes. This suggests that more proactive parenting, medical coordination, and early childhood education might benefit all premature infants.¹⁷  Despite >6 decades of policy initiatives from Great Society, No Child Left Behind, and Schools for the 21st Century, only half of the nation’s 3- and 4-year-olds are enrolled in preschool, and the quality of that experience is extremely variable. Gaps in multidimensional teacher ratings at school entry between low-income and minority students and their upper-income peers are increasing. These findings suggest that both health and educational sectors will need to make major changes to their approaches if infants born prematurely, especially those with social risks, are to have the best chance of accessing helpful supports and achieving equitable outcomes.¹⁸ 

Of the models proposed to shed light on the biobehavioral mechanisms underlying the differences in patterns of development observed between premature and term infants, three are of note:

1. The self-regulation model posits that infants born prematurely have alterations in behavioral regulation from diverse prenatal (maternal anxiety or depression), perinatal (procedural pain or stress in stabilizing immature organ systems), and postnatal (small for gestational age growth trajectories or evolving adapted brain responses) factors leading to more difficult, distracted, and less playful interactions.^19,20  Hospital-initiated and home-based parenting supports could improve these regulatory skills and developmental progress.^21–24 

2. Attachment theory emphasizes that all children benefit from attuned and consistent parenting, especially that associated with breastfeeding, kangaroo care, and skin-to-skin interventions, and that such parenting may facilitate children’s self-regulation, social communication, and environmental exploration.²⁵  Premature infants experience greater dysregulation in feeding, sleeping, and crying behaviors, contributing to added challenges for parents who may have a harder time getting “in tune” with their infant and in identifying and responding to infant cues. Given that parents have also experienced the trauma and vulnerability of life-threatening neonatal critical illness, these complex demands can lead to parents experiencing depression, anxiety, and posttraumatic stress disorder.²⁶  Both caregiver support and facilitated parent–child interactions could prove essential for keeping the parent–child relationship on track and attachment secure.^27–31 

3. Dynamic systems theory states that motor behavior emerges from the dynamic cooperation of many subsystems in a task-specific context. For example, a child reaching to attain a desired object must integrate visual recognition, eye hand coordination, and precise motor actions. Through neuronal selection, new motor strategies are integrated into the child’s behavior so that the combination of reach, attain, and manipulate are made with precision, coordination, and automaticity.²⁶  Parents are supported to engage their child in activity-based learning activities around the child’s daily routines.^32–34  These tasks aim to enhance the child’s emerging developmental capabilities through selection and integration of adaptive neurodevelopmental pathways.

The LCHD model attempts to integrate findings from multiple scientific disciplines into a more unifying model of health development.³⁵  Recently updated to incorporate findings from epigenetics and systems biology, the model represents health development by trajectories that are impacted over time by risk and protective factors, arrayed in a multilayered, relational, developmental ecosystem. Dynamic transactions between these risk and protective factors and a person’s developing biological and behavioral capacities influence these trajectories, especially during early childhood and adolescence.^36,37  These processes are channeled within a “social scaffolding” of culturally linked and socially constructed pathways that influence outcomes. The LCHD model can readily incorporate learnings from the 3 models mentioned as contributors to a more detailed understanding of how the child acquires important developmental capabilities, including self- regulation, the formation of secure, mutually responsive relationships, and coordinated and integrated motor and communicative behaviors.

Applying an LCHD approach to understanding both the risk and protective factors influencing whether an infant will be born prematurely, and that infant’s subsequent developmental pathway, suggests that the time frame of interest over which relevant factors operate is very long, starting prenatally and even preconceptually. Parental health and behaviors are in turn influenced by events and experiences throughout their own earlier lives and those of previous generations. The fetus makes adaptive responses to his or her environment that are reflected in emerging, complex physiologic and neurobehavioral pathways that are particularly sensitive during periods of developmental plasticity.^38,39  Premature infants are particularly vulnerable to environmental factors because of the relative immaturity of their brains and the additional stresses that they experience in stabilizing their physiologic systems. Inevitably, proliferation of neural precursor cells, neural migration, and growth, differentiation, and organization of the neural network are disrupted by the prematurity experience, requiring adjustments to adaptation for optimal functioning.

Key to the LCHD model is the concept that the health and neurodevelopmental trajectories are modifiable. There is potential for premature infants to optimize their health trajectories toward thriving through exposure to protective factors such as supportive parenting, active learning, and adaptive environments. The model also suggests that providing premature infants with an array of targeted and tiered interventions that specifically promote regulatory behaviors, executive functioning, and self-efficacy, areas of particular concern for babies born before term, could prove to be powerful routes to improving school readiness and health equity. Finding the most effective ways to support these emerging developmental capabilities and uncovering additional biobehavioral mechanisms underlying patterns of developmental delay or resiliency, coupled with identifying interventions to influence them, will be priorities for life course intervention research.⁴⁰ 

Children grow and develop within the context of their families, communities, and societal systems, including health care, educational, and social services. Together, these factors combine to produce “developmental scaffolding” that interacts with the child’s own unique characteristics and shapes their developmental trajectory. Some of the factors forming the scaffolding are referred to as the “social determinants of health,” now understood to be important drivers and predictors of health over the life course. Interactions that take place within this scaffolding are complex and multidirectional. The scaffolding is a type of complex system, in which a change, or stress, can have multiple effects in ways that are hard to predict. Premature birth will impact this scaffolding structure. Strengthening the system to support a child’s healthy development is a prime goal of interventions.

Attachment, self-regulation, and early learning all occur within this system, and models that focus on these processes can be extremely helpful in understanding how best to fashion interventions that will impact, for example, the child’s “learning microsystem.” At the same time, we must remember that these microsystems do not operate in isolation, but themselves interact in a type of “complex adaptive system of systems.” Interventions designed to strengthen parent–infant bonds and to improve the quality of family relationships could have additive or multiplicative effects on interventions designed to promote cognitive development, or motor development. Simple interventions focused on just one aspect of development and delivered over a limited time frame will likely have less impact than interventions operating at individual, family, and community levels aligned around the same goals. For premature infants, a 3-dimensional type of scaffolding that is vertically integrated across child, family, and community levels, horizontally integrated across services and systems and longitudinally integrated over time, could go a long way to preventing many of the health and developmental issues that follow these children into adult life. A system in which interventions are tailored to be responsive to each child’s individual neurodevelopmental profile and social–environmental circumstances could be particularly effective. An array of targeted and tiered interventions that are preventive, proactive, accessible, and address the complexity of the child’s needs across home, health, and education systems during their preschool years and beyond would strengthen the scaffolding now optimizing health, development, and social skills in ways that could reduce, or even eliminate, the need for later externalstop ssupports.⁴⁰ 

A critical issue in developmental pediatrics and relational child health is how best to implement parenting supports to promote parent participation and understanding of their child's health and development and incorporate evidence-based community supports. Several engagement strategies for parents have been undertaken and include early kangaroo mother care, Newborn Individualized Developmental Care and Assessment Program, Vermont Mother−Infant Interaction, and the Canadian Family Integrated Care models, although none has yet spread and scaled at population levels. Several model programs (Table 2)^41–44  are moving toward the types of comprehensive, multilevel interventions that will be needed to transform the system of supports for premature infants and their families:

The Positive Parenting Program (Triple P) was designed to provide parents with a supportive behavioral health network linked to both pediatric and parental concerns. Serving parents of children from infancy to adolescence, it has shown preventive efficacy for children with a diverse variety of behavioral, family, medical, and social risks. The Baby Triple P for Preterm Infants has focused on normalizing preterm parenting by providing feedback and information on each child’s early developmental signals and response repertoire. The emphasis is on creating a safe environment for learning about parenting and building positive parent–infant relationships. Parents learn adaptive coping skills for managing stress and for navigating shared partner caregiving. Baby Triple P starts in the NICU with in-person training sessions, then funnels into existing Triple P community-based programs supplemented with telephone consultations after hospital discharge tailored to each family's specific needs, with the aim of assisting parents in the application and practice of positive parenting.

To maintain engagement with participants in the program, families were given contact information for their nearest community-based Triple P support location and encouraged to access available developmental services until their child turned 2 years of age. At 3 monthly intervals, starting at 3 months' corrected age, families were sent tip sheets with developmentally appropriate parenting advice and were given phone support. Parents were also sent text messages reiterating program content every 14 days. At 2 years' corrected age, children in the intervention group had significantly increased cognitive, motor, and symbolic communication skills compared with controls. In addition, infants in the intervention group demonstrated significantly increased competencies in symbolic play, a key developmental area involving imitation, social learning, and problem solving. All effect sizes were mild to moderate in the context of a low-cost intervention that can be widely disseminated. A supplementary analysis suggested that session attendance of preventive parenting interventions for vulnerable infants born preterm could be improved by employing explicit strategies to enroll all infants born very preterm and engage those mothers who have lower educational attainment or financial stressors.⁴⁰ 

This proactive, nonstigmatizing, preventive intervention addresses health, development, parenting, and caregiver well-being. As parents learn to recognize infant cues, manage regulatory and sleep challenges, feel supported by their partners, and have access to community resources, they can experience themselves as their infant's first and competent teachers. They also learn which behavior interventions are most helpful in promoting their child's learning.

H-Hope aims to engage parents in regular caregiving, when preterm children are 30 to 36 weeks’ gestation, by teaching caregivers how to understand and respond to infant cues. H-Hope aims to provide an intervention that mothers with stressors of poverty, minority status, limited maternal education, and neighborhood distress would find collaborative, respectful, and supportive.²¹  It facilitates infant behavioral organization around feeding routines and bundled activities to respect the infant’s sleep, pain, and quiet activities. A nurse/developmental–family support advocacy team (1 nurse and 1 trained community member, culturally congruent with many of the participating mothers) provided maternal participatory guidance sessions (maternal education and social support) on infant-directed use of auditory, tactile, visual, and vestibular stimuli. H-HOPE increased the frequency of orally directed behaviors and promoted parenting confidence, improving short-term oral motor organization, cranial growth, and early motor skills. H-HOPE also reduced overall in-hospital costs, optimized postdischarge adherence to medical and developmental follow-up, and increased parent–infant interactive engagement.^21,25  H-HOPE intervention integrates parenting, medical, and developmental interventions in a proactive participatory framework that is family-centered, parent-mediated, and interdisciplinary. Consistent with a LCHD approach, it is culturally grounded and builds on family strengths, enabling the intervention to continue at home when professionals are absent, therefore increasing the benefits.

The Learning Games curriculum focuses on how these parent-mediated developmental interventions can minimize the effect that poverty has on at-risk preterm children.⁴⁵  The IHDP was an 8-site, multicenter study with enrollment in 1985 to 1986, consisting of home visits every week for the first year and every other week for the second and third year. Visits focused on problem-solving training for parents to increase their general adaptational and parenting skills. The program also included daily center-based education between chronological ages 12 and 36 months, parent support groups, and intensive pediatric follow-up care.

At age 3 years, children received access to early Head Start and early childhood community-based education programs.^46,47  Motivation was regarded as a key component of adaptation and success and was influential in the development of Head Start program goals emphasizing psychological and socioemotional development.^48–55 

The IHDP demonstrated that preterm children with access to integrated medical, parenting, and developmental activities had improved chances of being developmentally on track at age 3 years and subsequently experienced improved academic success. Importantly, parents who struggled in school themselves were better able to partner with the child’s teachers and advocate for the child’s supports, promoting inclusion and success.⁵⁶ 

Reynolds has further conceptualized early childhood educational interventions for high-risk, impoverished children in terms of the “5 hypotheses” of cognitive advantage, motivational advantage, socioemotional adjustment, family support behavior, and school and community support.⁵⁷  The impact of an intervention will depend on the characteristics of the program (eg, timing, duration, intensity) and characteristics of the family, child, and community, the conditions of risk. To the extent the intervention impacts the 5-Hypothesis Model mediators, and the mediators’ lead to better outcomes, longer-term impacts will occur. Education outcomes tend to be more directly affected by cognitive advantage, family support, and motivation, whereas social behavior and mental health are affected by socioemotional adjustment and school quality.^58–61  Implemented in the Chicago Parent 3 to 8-year intervention, the model significantly increased academic achievement, reduced grade repetitions, decreased dropping out of high school, and reduced school-to-prison trajectories.⁵⁹ 

Ideally, interventions designed to help premature infants will have long-term positive impacts on their health and well-being, in addition to bringing about short-term improvements in developmental milestones and educational attainment. The Life Course Intervention Research network, a collaborative network of >75 researchers, service providers, family and community representatives, and thought leaders committed to improving life course health trajectories and outcomes for children and families, recently proposed 12 characteristics of life course interventions. Based on a synthesis of the LCHD literature, these characteristics attempt to articulate what will make an intervention more likely to have a beneficial impact on the active development of health over the life course.⁶²  The model programs from the previous section embody a number of these characteristics, but they could be further developed to better codify a wider range of these attributes. In this section, we divide the 12 characteristics into 4 broad groups:

Interventions need to be tailored to the child’s developmental, rather than chronological, age; address emerging health capacities and capabilities; focus on longitudinal (life course) impacts; and be strategically timed to address important transitions and turning points. Research is needed to determine which components of interventions are most important, when they should be delivered, and by whom to have the maximum effect. Interventions that address emerging capacities, such as self-regulation and positive relationships, may prove to be more important over the long term for premature infants than traditional intervention approaches aimed at reaching narrowly defined developmental milestones.

These developmentally focused interventions are even more critical for those infants whose risk for developmental delay is a result of social risk factors. Spittle et al showed that, for children who were classified as high social risk, the intervention group scored two-thirds of an SD higher on the Bayley’s assessment than the control group. However, the children who were lower social risk showed little difference between the intervention groups and the control groups.⁶³  Despite the benefit of interventions for children with high social risk, there are clear disparities in access to health care, parental support, and early education. As family income decreased, the odds of receiving timely and quality early intervention services decreased significantly.⁶⁴  Children who grow up in neighborhoods that were disadvantaged in basic community resources had poorer cognitive and literacy outcomes compared with children in resource-rich neighborhoods. Children of color are disproportionately affected by social risk because of the connection between SES and structural racism in the past and modern laws and policies that make it difficult for parents of color to increase wealth and move to neighborhoods with quality community resources.^65,66 

Life course interventions aim to promote thriving and flourishing across all domains of well-being and to engage and build on child and family strengths. This approach aims to give children the tools they need early on to increase their health, developmental, and social well-being. Premature birth is a major risk factor for decreasing a child’s developmental trajectory, yet the existing approach to interventions targets children once they demonstrate developmental delays, instead of intervening for premature children before delays appear.

Moving beyond a focus on individual-level interventions, life course approaches suggest that stacked or integrated interventions at child, family, and community levels will be more likely to impact health trajectories, and that these interventions will benefit from being vertically, horizontally, and longitudinally integrated across programs and sectors. Expansion of programs such as H-HOPE and Triple P to all premature infants could go a long way toward a more effective integration of individual, family, and community-based strategies to support premature infants, minimizing the traumatic impact of the NICU experience on parents and improving the quality of parent–child relationship.^67,68 

Interventions that are collaboratively codesigned with the families they are designed to help may be more likely to address their needs and impact health development. These interventions benefit from approaches that are family-centered, antiracist, antibiased, health-equity-focused, culturally grounded, and trauma-informed. They meet families where they are, taking account of their unique social and environmental circumstances. Early intervention program must make families feel comfortable and understood to be effective. Peer-led support groups can be an important component, with peers typically selected because they have unique, lived, child-rearing experience and firsthand knowledge of the local social circumstances that new parents will face. Peer-led home visiting programs can have a positive impact on parenting attitudes and beliefs and result in more child preventative health care visits. Key to the success of these programs is the quality of relationships between parents and their home visitors, involving mutual respect, trust, and a valued partnership. Home visiting programs staffed by peers had smaller short-term effects but greater long-term effects on maternal health than did those staffed by nurses.²³ 

Family-centered care starting in the NICU allows activities learned in the hospital to be integrated into the family’s routine at home.²⁶  The quality of mother–preterm infant interaction is important for infant development and language acquisition, which impacts cognitive and social–emotional outcomes.¹⁰  Verbal stimulation and the sensitivity that the mother shows while interacting with her infant enhances mother–child attachment, which impacts social–emotional development and future health. Quality interactions can be more challenging with premature infants because they tend to vocalize and smile less than their full-term peers, offering fewer behavioral cues. Less able to interpret her infant’s behavior, a mother can become confused or frustrated, struggle to respond contingently, and risk poorer quality mother–infant interactions.⁹  Given these challenges, it is important that parents receive quality parent education and skills training during their time in the NICU and throughout early childhood. During their time in the hospital, parents receive training on feeding and medications, but lack training in how to handle behavioral and communication challenges. Often during this period of infant vulnerability and parenting challenges, NICU staff recognize that families have additional stress from their personal and social circumstances. Some parents have a world view colored by having experienced untoward events during their own early childhood. Some families, more frequently those experiencing premature births, live in communities of concentrated disadvantage and face a variety of developmentally inhibiting social challenges. Acknowledging both past traumas and current challenges helps to build trust and facilitate engagement, thereby enhancing the effectiveness of education and supports.⁴⁵ 

Premature infants are challenged to overcome a range of biological vulnerabilities frequently compounded by social and environmental stressors. After premature delivery, parents are at increased risk for anxiety, depression, and even posttraumatic stress disorder, especially if their infant is hospitalized for a long period. Existing intervention approaches reach only a small portion of the families that could benefit, lack coordination and integration, and have an overreliance on remediation. An intervention system for premature infants, designed using principles that enhance optimal life course development, would provide proactive services to all families, tailoring the intensity and content of the approach to social and biological needs. Individual-level therapies would be integrated with enhanced parenting supports to address premature infants’ additional needs to promote self-regulation, attachment, and early learning. Improving early relational health could benefit the long-term health trajectories of parents and infants, equipping parents with skills that could benefit their other children, and even improve intergenerational benefits (Fig 1).

A comprehensive community-based intervention system could be linked to the child’s medical home, with ongoing neurodevelopmental surveillance and anticipatory guidance, and to early education programs such as Head Start. Building this system requires significant research to test new approaches, including increased use of technology, such as phone-based apps and telehealth, as components of interventions. Life course interventions that were more responsive to the multifold challenges associated with prematurity would aim to reduce the proportion of children entering kindergarten with dysregulated health, developmental delays, stressed families, missed opportunities for learning, and delays in cognitive, executive function, and social regulatory skills. Investing in such a system now could yield significant savings across the lifespan, improving health development across generations and the well-being of premature infants for life.

H-HOPE

Hospital to Home: Optimizing the Prenatal Infant’s Early Environment

IHDP

Infant Health and Development Program

LCHD

Life Course Health Development

SES

socioeconomic status

Triple P

Positive Parenting Program