Parents of infants admitted to the neonatal intensive care unit (NICU) experience psychological distress, loss of the parenting role, and disruptions to parent-infant bonding. The inclusion of evidence-based practices to address these challenges in the NICU has largely been based upon short-term improvements in parent and infant functioning. However, less is known regarding the extent to which family-based interventions may also be associated with longer-term parenting behaviors and children’s neurobehavioral outcomes. Comprehensive family-based NICU interventions demonstrate consistent links with later parental mental well-being, sensitive parenting behaviors, and children’s cognitive and socioemotional development. Dyadic co-regulation activities implemented inconsistently and/or in isolation to other components of NICU interventions show mixed associations with outcomes, highlighting the need for multifaceted wrap-around care. Further research is needed to delineate associations between NICU interventions and children’s neurological and language development, with follow-up beyond very early childhood in larger samples. Long-term associations may reflect the stability of early parental responses to NICU interventions and the extent to which parents continue to implement mental health and sensitive parenting techniques in the home. However, the transition of parental psychiatric care from hospital to community-based services upon NICU discharge remains a pertinent need for high-risk families. Remaining issues also concern the extent to which NICU interventions incorporate sociodemographic differences across families, and whether interventions are generalizable or feasible across hospitals. Despite variation across interventions and NICUs, supporting, educating, and partnering with parents are crucial to strengthen longer-term family functioning and alter the developmental trajectories of high-risk infants.

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NICU Hospitalization: Long-Term Implications on Parenting and Child Behaviors.

* Abbreviations:
 PBP — : potentially better practice
 QI — : quality improvement

In America, health and well-being are, to a large extent, determined by a person’s race, ethnicity, income, immigration status, and neighborhood of residence. Racism, segregation, and inequality of income, opportunity, and wealth cause disparities in health outcomes across the life course.1 The effects are particularly pronounced for infants requiring neonatal intensive care and their families because of the already significant risk for neurodevelopmental disabilities and need for specialized services.

As health professionals, pediatricians, and neonatal health care providers, we have the responsibility to address these social determinants of health. We must learn to practice social as well as technical medicine2 and follow-through, accepting that our responsibility to the infants and families we serve extends beyond the hospital or clinic walls. Although in this article we focus on follow-through in the neonatal intensive care setting, the ideas for practicing social medicine we present have wider application in pediatrics, obstetrics, and beyond.

We have proposed the term “follow-through” to distinguish our proposal from the more typical neonatal practice of “follow-up” in which the services and staffing of clinics are focused, primarily, on medical conditions and assessment of neurodevelopment after discharge from the NICU. Only 70% of follow-up clinics provide any social services, for example, and <10% provide legal services.3 We propose a more comprehensive approach that begins before birth and continues into childhood, involving health professionals, families, and communities as partners to meet the social as well … 

Address correspondence to Erika M. Edwards, PhD, MPH, Data Science, Vermont Oxford Network, 33 Kilburn St, Burlington, VT 05401. E-mail: eedwards{at}vtoxford.org

https://pediatrics.aappublications.org/content/pediatrics/early/2020/06/12/peds.2020-0360.full.pdf

Our Responsibility to Follow Through for NICU Infants and Their Families.

With increasing survival rates of children born extremely preterm (EPT), before gestational week 28, the post-discharge life of these families has gained significant research interest. Quantitative studies of parental experiences post-discharge have previously reported elevated levels depressive symptoms, posttraumatic stress-disorder and anxiety among the parents. The current investigation aims to qualitatively explore the situation for parents of children born EPT in Sweden during the first year at home. Semi-structured interviews were performed with 17 parents of 14 children born EPT; eight parents were from an early intervention group and nine parents from a group that received treatment as usual, with extended follow-up procedures. Three main themes were identified using a thematic analytic approach: child-related concerns, the inner state of the parent, and changed family dynamics. Parents in the intervention group also expressed themes related to the intervention, as a sense of security and knowledgeable interventionists. The results are discussed in relation to different concepts of health, parent-child interaction and attachment, and models of the recovery processes. In conclusion, parents describe the first year at home as a time of prolonged parental worries for the child as well as concerns regarding the parent's own emotional state.

https://www.mdpi.com/1660-4601/17/24/9326/pdf

Parents' Experiences of the First Year at Home with an Infant Born Extremely Preterm with and without Post-Discharge Intervention: Ambivalence, Loneliness, and Relationship Impact

Objective: To examine the impact of medical complexity among very preterm infants on health care resource use, family, and neurodevelopmental outcomes at 18 months’ corrected age. Methods: This observational cohort study of Canadian infants born < 29 weeks’ gestational age in 2009–2011 compared infants with and those without medical complexity defined as discharged home with assistive medical technology. Health care resource use and family outcomes were collected. Children were assessed for cerebral palsy, deafness, blindness, and developmental delay at 18 months. Logistic regression analysis was performed for group comparisons. Results: Overall, 466/2,337 infants (20%) needed assistive medical technology at home including oxygen (79%), gavage feeding (21%), gastrostomy or ileostomy (20%), CPAP (5%), and tracheostomy (3%). Children with medical complexity were more likely to be re-hospitalized (OR 3.6, 95% CI 3.0–4.5) and to require ≥2 outpatient services (OR 4.4, 95% CI 3.5–5.6). Employment of both parents at 18 months was also less frequent in those with medical complexity compared to those without medical complexity (52 vs. 60%, p < 0.01). Thirty percent of children with medical complexity had significant neurodevelopmental impairment compared to 13% of those without medical complexity (p < 0.01). Lower gestational age, lower birth weight, bronchopulmonary dysplasia, sepsis, and surgical necrotizing enterocolitis were associated with a risk of medical complexity. Conclusion: Medical complexity is common following very preterm birth and has a significant impact on health care use as well as family employment and is more often associated with neurodevelopmental disabilities. Efforts should be deployed to facilitate care coordination upon hospital discharge and to support families of preterm children with medical complexity.

Very Preterm Infants with Technological Dependence at Home: Impact on Resource Use and Family.

Childbearing and infant care practices have dramatically evolved since the 15th century. Shifting away from traditional home-based experiences, with the emergence of the microbial aware era and the hospital as a quintessential sanitizing machine, early life has now long been characterized as a condition to be medically managed. Paradoxically, this ‘germ-free’ march towards a healthier early life environment has opened the door to greater microbial susceptibility and dysbiosis. Many studies have now established that infant exposure to excessive sanitation and hygiene regimens are associated with an increased risk for and onset of childhood immune system diseases. In this paper, we explore the ways in which biomedical-centered efforts to enhance early life have come at a cost to planetary health, in relation to infant microbial succession. We examine three major areas of early life that have been subject to the ‘ripple effect’ of hygiene and sanitation concerns—childbirth, home environment, and breastfeeding.

https://www.mdpi.com/2078-1547/9/2/43/pdf

Sanitization of Early Life and Microbial Dysbiosis

Background
When families transition from the neonatal intensive care unit (NICU) to the home, they become responsible for their infant's daily medical needs. Though neonatology physicians prepare families for hospital discharge, it is unclear how much clinicians understand about how their teaching and instructions translate into home care. The goal of this study was to evaluate the influence of a home visiting program on neonatology fellows’ understanding of family needs soon after hospital discharge.

Methods
Neonatology fellows conducted a home visit for an infant recently discharged. Before the visit, fellows reviewed their original discharge instructions, along with information about the family's neighborhood. During the home visit, fellows reviewed their discharge planning with families and discussed any challenges experienced. Afterwards, fellows completed a semi-structured interview; these transcriptions were manually coded for themes.

Results
Fellows identified several common women/family discharge challenges. These challenges fall into four domains: (1) inadequate discharge preparation, (2) medicalization of the home, (3) family adjustment to new “normal,” and (4) the relevance of social context to discharge planning. Most (90%) fellows reported the home visit experience would affect their future NICU discharge practices and all agreed that home visits should be a part of neonatology training.

Conclusions
Home visits allowed neonatology fellows to examine how their discharge preparation did, or did not, meet the family's needs. Incorporating home visits into neonatology training could help fellows learn about the relevance of social and community factors that are difficult to assess in the inpatient setting.

Janice E. Hobbs

Papers

"I don't know what I was expecting": Home visits by neonatology fellows for infants discharged from the NICU.