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The Implications of Preterm Birth for Health and Wellbeing over...
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The Implications of Preterm Birth for Health and Wellbeing over the Life Course

A special issue of Children (ISSN 2227-9067). This special issue belongs to the section "Pediatric Neonatology".

Deadline for manuscript submissions: closed (20 October 2023) | Viewed by 18203

Special Issue Editors

Dr. Jonathan Samuel Litt

E-Mail Website
Guest Editor
Department of Neonatology, Department of Pediatrics, Harvard Medical School, Boston, MA 02215, USA
Interests: newborn medicine
Prof. Dr. Susan R. Hintz

E-Mail Website
Co-Guest Editor
Division of Neonatal and Developmental Medicine, Department of Pediatrics, Stanford University School of Medicine, Palo Alto, CA 94305, USA
Interests: early childhood neurodevelopmental outcomes, mortality and morbidities of ELBW, extremely premature, high-risk infants; predictive clinical factors, evidence-based interventions

Special Issue Information

Dear Colleagues,

Infants born prematurely are surviving in greater numbers, even from the earliest gestational ages. However, preterm birth is associated with ongoing chronic health problems and multimorbid conditions, developmental challenges, and functional limitations in childhood and beyond. Though common, such outcomes are not a foregone conclusion, varying by infant and maternal health at birth, experiences during neonatal hospitalization, and the familial and social context in which the child lives. Therapeutic, material, and psychosocial supports for the infant and family pre- and postnatally and throughout childhood are vital to ensure the best possible outcomes for all. Children and families exist within a dynamic, multilayered ecosystem of community, social, educational, and economic services, programs, and policies that support growth and development. Such a life-course health development perspective is instrumental to identifying, quantifying, and ameliorating the complex, multilevel threats to health and wellbeing for infants born prematurely.

We are seeking submissions of original research, systematic and narrative reviews, and commentaries on the life-course implications of preterm birth on physical, mental, and behavioral health, functional abilities, and wellbeing for children and their families.

Dr. Jonathan Samuel Litt
Prof. Dr. Susan R. Hintz
Guest Editors

Manuscript Submission Information

Manuscripts should be submitted online at www.mdpi.com by registering and logging in to this website. Once you are registered, click here to go to the submission form. Manuscripts can be submitted until the deadline. All submissions that pass pre-check are peer-reviewed. Accepted papers will be published continuously in the journal (as soon as accepted) and will be listed together on the special issue website. Research articles, review articles as well as short communications are invited. For planned papers, a title and short abstract (about 100 words) can be sent to the Editorial Office for announcement on this website.

Submitted manuscripts should not have been published previously, nor be under consideration for publication elsewhere (except conference proceedings papers). All manuscripts are thoroughly refereed through a single-blind peer-review process. A guide for authors and other relevant information for submission of manuscripts is available on the Instructions for Authors page. Children is an international peer-reviewed open access monthly journal published by MDPI.

Please visit the Instructions for Authors page before submitting a manuscript. The Article Processing Charge (APC) for publication in this open access journal is 2400 CHF (Swiss Francs). Submitted papers should be well formatted and use good English. Authors may use MDPI's English editing service prior to publication or during author revisions.

Keywords

  • prematurity
  • life course
  • chronic health problems
  • multimorbidity
  • developmental delay
  • behavioral health
  • mental health
  • health-related quality of life
  • function
  • participation

Published Papers (12 papers)

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Research

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15 pages, 1101 KiB  
Article
Family Reflections on a Lifecourse Journey after Neonatal Intensive Care: Neurodiversity, Enablement and Hope
by Michael E. Msall
Children 2024, 11(2), 165; https://doi.org/10.3390/children11020165 - 26 Jan 2024
Viewed by 1001
Abstract
In 1969, my sister Christianne was born late preterm with a genetic disorder and given a very pessimistic prognosis. I will describe, from a family perspective, some lifecourse lessons about neurodiversity using the World Health Organization International Classification Model of Functioning (WHO-ICF). This [...] Read more.
In 1969, my sister Christianne was born late preterm with a genetic disorder and given a very pessimistic prognosis. I will describe, from a family perspective, some lifecourse lessons about neurodiversity using the World Health Organization International Classification Model of Functioning (WHO-ICF). This model emphasizes that, in communicating about the complexity of outcomes of disability, attention must be paid to facilitators and barriers for optimizing health, functioning in daily life, and participation in the community. I will describe several developmental lifecourse lessons learned in negotiating fragmented systems of health, education, and community care. I will suggest ways to improve physician–parent communication, focusing on enablement to decrease a family’s sense of isolation and despair. I have benefitted from my parents’ archives, discussions with all my seven sisters (including Christianne), and discussions with my brother and sister-in law. They all have provided invaluable feedback from a family perspective during Christianne’s lived lifecourse journey with neurodiversity. Full article
(This article belongs to the Special Issue The Implications of Preterm Birth for Health and Wellbeing over the Life Course)
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30 pages, 913 KiB  
Article
Uncertainty and the NICU Experience: A Qualitative Evaluation of Family and Provider Perspectives
by Katharine Griffin Gorsky, Saloni Butala, Madison House, Chelsea Moon, Sam Calvetti, Tenzin Khando, Michele Kipke and Ashwini Lakshmanan
Children 2023, 10(11), 1745; https://doi.org/10.3390/children10111745 - 27 Oct 2023
Cited by 1 | Viewed by 1508
Abstract
There is limited information regarding caregiver and provider perspectives on uncertainty across the continuum of the neonatal intensive care unit (NICU) experience. Open-ended semi-structured interviews were conducted with providers and English- and Spanish-speaking caregivers of infants with a history of admission to a [...] Read more.
There is limited information regarding caregiver and provider perspectives on uncertainty across the continuum of the neonatal intensive care unit (NICU) experience. Open-ended semi-structured interviews were conducted with providers and English- and Spanish-speaking caregivers of infants with a history of admission to a quaternary safety-net NICU. Major themes were generated using inductive–deductive thematic analysis. Seventy-six individuals participated in the study: 47 caregivers and 29 providers. The median gestational age of the infants was 29 weeks and 85% were classified as having chronic complex disease per the Pediatric Medical Complexity Algorithm. Most providers were neonatologists (37%) and nurses (27%) and more than half had over ten years of experience. A conceptual model of caregiver uncertainty was developed and key domains included drivers of uncertainty and its impact, and factors influencing coping and adaptation. Our analysis found a positive association between caregiver information gathering, clinical continuity, support systems, maternal mental health supports, and witnessing a child’s progress and the development of adjustment to chronic uncertainty. These results suggest key areas for intervention that can promote parental adaptation to the uncertainty inherent in the NICU experience. Full article
(This article belongs to the Special Issue The Implications of Preterm Birth for Health and Wellbeing over the Life Course)
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18 pages, 1260 KiB  
Article
Organizational Health Literacy as a Tool for Health Equity: Application in a High-Risk Infant Follow-Up Program
by Lindsay E. Rosenfeld, Kelly McCullagh, Carolyn J. King, Micaela Torres and Jonathan S. Litt
Children 2023, 10(10), 1658; https://doi.org/10.3390/children10101658 - 6 Oct 2023
Cited by 2 | Viewed by 1361
Abstract
Background: Healthy People 2030 emphasizes personal health literacy (individual skills) and organizational health literacy—the degree to which organizations equitably enable individuals to find, understand, and use information and services to inform health-related decisions and actions for themselves and others. However, research on the [...] Read more.
Background: Healthy People 2030 emphasizes personal health literacy (individual skills) and organizational health literacy—the degree to which organizations equitably enable individuals to find, understand, and use information and services to inform health-related decisions and actions for themselves and others. However, research on the latter is in the early stages. Methods: This study describes an organizational health literacy assessment in a U.S. urban academic children’s hospital. A variety of evidence-based health literacy assessments were used to assess patient information materials and the environment, including institutional practices, navigation, culture and language, and communication. Trained interviewers and analysts reached consensus for all assessments. Results: Information Items: SMOG scores (n = 9) ranged from 7th- to 14th-grade reading level (average = 11.3). PEMAT-P scores (n = 9) ranged from 43.8% to 93.8% understandability and 0% to 80% actionability. CDC CCI scores (literacy demand) (n = 6) ranged from 18.2% to 58.8% (≥90% = excellent). SAM scores (suitability) (n = 6) fell in the “adequate” range (43.2–58.3%). The PMOSE/IKIRSCH scores (complexity) (n = 3) noted low-moderate difficulty. Apter’s Hierarchy (n = 4) revealed three numeracy domains (50% = descriptive purposes and decision-making, 100% = interpreting information). Organization-level: Walking interviews highlighted organizational facilitators and barriers related to the pre-visit and visit environments. HLE2 domain scores ranged from 52% to 68%. Conclusions: Organizational health literacy demands far outweigh the average literacy skills of adults in the U.S. (patients and staff). Findings can be used to hone quality improvement and other processes to focus on structural solutions to increase health equity. Full article
(This article belongs to the Special Issue The Implications of Preterm Birth for Health and Wellbeing over the Life Course)
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12 pages, 458 KiB  
Article
The Role of Distance from Home to Hospital on Parental Experience in the NICU: A Qualitative Study
by Stephanie L. Bourque, Venice N. Williams, Jessica Scott and Sunah S. Hwang
Children 2023, 10(9), 1576; https://doi.org/10.3390/children10091576 - 20 Sep 2023
Viewed by 1087
Abstract
Prolonged admission to the neonatal intensive care unit presents challenges for families, especially those displaced far from home. Understanding specific barriers to parental engagement in the NICU is key to addressing these challenges with hospital-based interventions. The objective of this qualitative study was [...] Read more.
Prolonged admission to the neonatal intensive care unit presents challenges for families, especially those displaced far from home. Understanding specific barriers to parental engagement in the NICU is key to addressing these challenges with hospital-based interventions. The objective of this qualitative study was to explore the impact of distance from home to hospital on the engagement of parents of very preterm infants (VPT) in the neonatal intensive care unit (NICU). We used a grounded theory approach and conducted 13 qualitative interviews with parents of VPT who were admitted ≥14 days and resided ≥50 miles away using a semi-structured interview guide informed by the socio-ecological framework. We used constant comparative method with double coders for theme emergence. Our results highlight a multitude of facilitators and barriers to engagement. Facilitators included: (1) individual—delivery preparedness and social support; (2) environmental—medical team relationships; and (3) societal—access to perinatal care. Barriers included: (1) individual—transfer stressors, medical needs, mental health, and dependents; (2) environmental—NICU space, communication, and lack of technology; and (3) societal—lack of paid leave. NICU parents with geographic separation from home experienced a multitude of barriers to engagement, many of which could be addressed by hospital-based interventions. Full article
(This article belongs to the Special Issue The Implications of Preterm Birth for Health and Wellbeing over the Life Course)
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17 pages, 345 KiB  
Article
Neurodevelopmental, Mental Health, and Parenting Issues in Preterm Infants
by Richard J. Shaw, Soudabeh Givrad, Celeste Poe, Elizabeth C. Loi, Margaret K. Hoge and Melissa Scala
Children 2023, 10(9), 1565; https://doi.org/10.3390/children10091565 - 18 Sep 2023
Cited by 2 | Viewed by 2359
Abstract
The World Health Organization in its recommendations for the care of preterm infants has drawn attention to the need to address issues related to family involvement and support, including education, counseling, discharge preparation, and peer support. A failure to address these issues may [...] Read more.
The World Health Organization in its recommendations for the care of preterm infants has drawn attention to the need to address issues related to family involvement and support, including education, counseling, discharge preparation, and peer support. A failure to address these issues may translate into poor outcomes that extend across the lifespan. In this paper, we review the often far-reaching impact of preterm birth on the health and wellbeing of the parents and highlight the ways in which psychological stress may have a negative long-term impact on the parent-child interaction, attachment, and the styles of parenting. This paper addresses the following topics: (1) neurodevelopmental outcomes in preterm infants, including cognitive, sensory, and motor difficulties, (2) long-term mental health issues in premature infants that include elevated rates of anxiety and depressive disorders, autism, and somatization, which may affect social relationships and quality of life, (3) adverse mental health outcomes for parents that include elevated rates of depression, anxiety, and symptoms of post-traumatic stress, as well as increased rates of substance abuse, and relationship strain, (4) negative impacts on the parent-infant relationship, potentially mediated by maternal sensitivity, parent child-interactions, and attachment, and (5) impact on the parenting behaviors, including patterns of overprotective parenting, and development of Vulnerable Child Syndrome. Greater awareness of these issues has led to the development of programs in neonatal mental health and developmental care with some data suggesting benefits in terms of shorter lengths of stay and decreased health care costs. Full article
(This article belongs to the Special Issue The Implications of Preterm Birth for Health and Wellbeing over the Life Course)

Review

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14 pages, 496 KiB  
Review
Ensuring Optimal Outcomes for Preterm Infants after NICU Discharge: A Life Course Health Development Approach to High-Risk Infant Follow-Up
by Jonathan S. Litt, Neal Halfon, Michael E. Msall, Shirley Ann Russ and Susan R. Hintz
Children 2024, 11(2), 146; https://doi.org/10.3390/children11020146 - 24 Jan 2024
Viewed by 1551
Abstract
Children born prematurely (<37 weeks’ gestation) have an increased risk for chronic health problems and developmental challenges compared to their term-born peers. The threats to health and development posed by prematurity, the unintended effects of life-sustaining neonatal intensive care, the associated neonatal morbidities, [...] Read more.
Children born prematurely (<37 weeks’ gestation) have an increased risk for chronic health problems and developmental challenges compared to their term-born peers. The threats to health and development posed by prematurity, the unintended effects of life-sustaining neonatal intensive care, the associated neonatal morbidities, and the profound stressors to families affect well-being during infancy, childhood, adolescence, and beyond. Specialized clinical programs provide medical and developmental follow-up care for preterm infants after hospital discharge. High-risk infant follow-up, like most post-discharge health services, has many shortcomings, including unclear goals, inadequate support for infants, parents, and families, fragmented service provisions, poor coordination among providers, and an artificially foreshortened time horizon. There are well-documented inequities in care access and delivery. We propose applying a life course health development framework to clinical follow-up for children born prematurely that is contextually appropriate, developmentally responsive, and equitably deployed. The concepts of health development, unfolding, complexity, timing, plasticity, thriving, and harmony can be mapped to key components of follow-up care delivery to address pressing health challenges. This new approach envisions a more effective version of clinical follow-up to support the best possible functional outcomes and the opportunity for every premature infant to thrive within their family and community environments over their life course. Full article
(This article belongs to the Special Issue The Implications of Preterm Birth for Health and Wellbeing over the Life Course)
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16 pages, 1090 KiB  
Review
Accelerated Aging and the Life Course of Individuals Born Preterm
by Audrey Bousquet, Keia Sanderson, T. Michael O’Shea and Rebecca C. Fry
Children 2023, 10(10), 1683; https://doi.org/10.3390/children10101683 - 13 Oct 2023
Viewed by 2080
Abstract
Individuals born preterm have shorter lifespans and elevated rates of chronic illness that contribute to mortality risk when compared to individuals born at term. Emerging evidence suggests that individuals born preterm or of low birthweight also exhibit physiologic and cellular biomarkers of accelerated [...] Read more.
Individuals born preterm have shorter lifespans and elevated rates of chronic illness that contribute to mortality risk when compared to individuals born at term. Emerging evidence suggests that individuals born preterm or of low birthweight also exhibit physiologic and cellular biomarkers of accelerated aging. It is unclear whether, and to what extent, accelerated aging contributes to a higher risk of chronic illness and mortality among individuals born preterm. Here, we review accelerated aging phenotypes in adults born preterm and biological pathways that appear to contribute to accelerated aging. We highlight biomarkers of accelerated aging and various resiliency factors, including both pharmacologic and non-pharmacologic factors, that might buffer the propensity for accelerated aging among individuals born preterm. Full article
(This article belongs to the Special Issue The Implications of Preterm Birth for Health and Wellbeing over the Life Course)
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13 pages, 962 KiB  
Review
A Narrative Review of the Association between Prematurity and Attention-Deficit/Hyperactivity Disorder and Accompanying Inequities across the Life-Course
by Yarden S. Fraiman, Genevieve Guyol, Dolores Acevedo-Garcia, Andrew F. Beck, Heather Burris, Tumaini R. Coker and Henning Tiemeier
Children 2023, 10(10), 1637; https://doi.org/10.3390/children10101637 - 30 Sep 2023
Cited by 1 | Viewed by 1488
Abstract
Preterm birth is associated with an increased risk of neurodevelopmental and neurobehavioral impairments including attention-deficit/hyperactivity disorder (ADHD), the most common neurobehavioral disorder of childhood. In this narrative review, we examine the known associations between prematurity and ADHD and highlight the impact of both [...] Read more.
Preterm birth is associated with an increased risk of neurodevelopmental and neurobehavioral impairments including attention-deficit/hyperactivity disorder (ADHD), the most common neurobehavioral disorder of childhood. In this narrative review, we examine the known associations between prematurity and ADHD and highlight the impact of both prematurity and ADHD on multiple domains across the pediatric life-course. We develop a framework for understanding the health services journey of individuals with ADHD to access appropriate services and treatments for ADHD, the “ADHD Care Cascade”. We then discuss the many racial and ethnic inequities that affect the risk of preterm birth as well as the steps along the “ADHD Care Cascade”. By using a life-course approach, we highlight the ways in which inequities are layered over time to magnify the neurodevelopmental impact of preterm birth on the most vulnerable children across the life-course. Full article
(This article belongs to the Special Issue The Implications of Preterm Birth for Health and Wellbeing over the Life Course)
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Other

Jump to: Research, Review

8 pages, 608 KiB  
Essay
NICU Language, Everyday Ethics, and Giving Better News: Optimizing Discussions about Disability with Families
by Paige Terrien Church, Maya Dahan, Amy Rule, Annie Janvier, Jane E. Stewart, John S. Maypole, Darcy Fehlings, Jonathan S. Litt and Rudaina Banihani
Children 2024, 11(2), 242; https://doi.org/10.3390/children11020242 - 15 Feb 2024
Viewed by 1250
Abstract
The Neonatal Intensive Care Unit (NICU) has a language and culture that is its own. For professionals, it is a place of intense and constant attention to microdetails and cautious optimism. For parents, it is a foreign place with a new and unique [...] Read more.
The Neonatal Intensive Care Unit (NICU) has a language and culture that is its own. For professionals, it is a place of intense and constant attention to microdetails and cautious optimism. For parents, it is a foreign place with a new and unique language and culture. It is also the setting in which they are introduced to their child and parenthood for this child. This combination has been referred to as an emotional cauldron. The neonatal ethics literature mainly examines complex ethical dilemmas about withholding/drawing life sustaining interventions for fragile children. Rarely are everyday ethics or mundane ethics discussed. Microethics describe the mundane, discrete moments that occur between patients/families and clinicians. A key piece of these microethics is the language used to discuss patient care. Perception of prognoses, particularly around long-term neurodevelopmental outcome, is shaped with the language used. Despite this, clinicians in the NICU often have no specific training in the long-term neurodevelopment outcomes that they discuss. This paper focuses on the microethics of language used to discuss long-term neurodevelopmental outcomes, the developmental neuroscience behind language processing, and offers recommendations for more accurate and improved communication around long-term outcomes with families with critically ill neonates. Full article
(This article belongs to the Special Issue The Implications of Preterm Birth for Health and Wellbeing over the Life Course)
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7 pages, 206 KiB  
Viewpoint
Parent Perspectives: Part 2—Considerations for the Transition Home Post-NICU Discharge
by Jessica N. DiBari and LaToshia Rouse
Children 2023, 10(12), 1835; https://doi.org/10.3390/children10121835 - 22 Nov 2023
Viewed by 1194
Abstract
This paper is part two of a series of papers written by the mothers of Neonatal Intensive Care Unit (NICU) graduates. The companion paper, “Parent Perspectives: Part 1—Considerations for Changing the NICU Culture”, considers all aspects of the NICU experience and [...] Read more.
This paper is part two of a series of papers written by the mothers of Neonatal Intensive Care Unit (NICU) graduates. The companion paper, “Parent Perspectives: Part 1—Considerations for Changing the NICU Culture”, considers all aspects of the NICU experience and provides recommendations for interventions and improvements from a life-course perspective while families are in the NICU. In part two, the focus is the transition home post-NICU stay. The time after NICU discharge is a critical and sensitive developmental period for NICU babies and their families, and an important life course transition. This paper provides a parent’s perspective of how to improve the transition home post-NICU stay. Our perspectives draw on the Life Course Health Development approach, which regards health as an active process that is developed over time based on a person’s internal biologic and physiologic systems, their external environment and circumstances, and the interactions or relationships between them. This paper describes a collaborative care model where parents and their healthcare teams work together to develop shared care plans. It also describes how we can build trust and family capacity to support long-term care, ensure family well-being, and link families to needed resources and support that can ease the transition from the NICU back to the home and optimize family health trajectories. Full article
(This article belongs to the Special Issue The Implications of Preterm Birth for Health and Wellbeing over the Life Course)
11 pages, 212 KiB  
Viewpoint
Parent Perspectives: Part 1—Considerations for Changing the NICU Culture
by Jessica N. DiBari and LaToshia Rouse
Children 2023, 10(11), 1735; https://doi.org/10.3390/children10111735 - 26 Oct 2023
Viewed by 1284
Abstract
While publications that aim to reflect the parent perspective are increasingly common in the medical literature, few are authored by parents in their own words. As mothers with lived and professional experience in the Neonatal Intensive Care Unit (NICU), we believe this perspective [...] Read more.
While publications that aim to reflect the parent perspective are increasingly common in the medical literature, few are authored by parents in their own words. As mothers with lived and professional experience in the Neonatal Intensive Care Unit (NICU), we believe this perspective is vital to improving health outcomes. We are writing from a life course health development framework that regards health as an active process that develops over time with the integration of physical, social, emotional, and relational components. Health development trajectories are shaped by the family and community ecosystems that surround each child. This means that the child’s ability to thrive is strongly linked to the family’s health and well-being. These links are not being given sufficient attention in clinical practice. Psychological distress, trauma, and grief are common family experiences in the NICU. Left unaddressed, they can negatively impact parent-child bonding. Drawing on life course principles, we make a series of recommendations for changes to practice to enable NICUs to better serve children and families, and better prepare families for the post-NICU experience. These include setting a positive tone in the NICU, creating a nurturing, personalized environment; addressing the social determinants of health; supporting families to develop a ‘growth’ mindset; and communicating in an optimistic, positive manner. Building trust is key to ensuring families feel supported and can be promoted through establishing equitable collaborative models of care. Peer support, doulas, and community health worker engagement can facilitate early interactions crucial to the child’s developmental progress and family healing. Full article
(This article belongs to the Special Issue The Implications of Preterm Birth for Health and Wellbeing over the Life Course)
12 pages, 298 KiB  
Commentary
Place-Based Strategies Addressing Neighborhood Environments to Improve Perinatal and Preterm Infant Outcomes
by Timothy D. Nelin, Kristan A. Scott, Allan C. Just and Heather H. Burris
Children 2023, 10(10), 1646; https://doi.org/10.3390/children10101646 - 2 Oct 2023
Viewed by 1024
Abstract
Preterm birth (defined as birth <37 weeks of gestation) is a significant health concern globally, with lasting implications for individuals, families, and society. In the United States, high preterm birth rates among Black and low-income populations likely result from differences in environmental exposures. [...] Read more.
Preterm birth (defined as birth <37 weeks of gestation) is a significant health concern globally, with lasting implications for individuals, families, and society. In the United States, high preterm birth rates among Black and low-income populations likely result from differences in environmental exposures. Structural racism and economic disadvantage have led to unequal distribution of polluting industrial sites and roadways across society as well as differential access to health-promoting resources which contribute to preterm birth risk. Once born, preterm infants remain at risk for numerous environmentally responsive adverse health outcomes that affect growth and development throughout childhood and adulthood. In this commentary, we describe associations of neighborhood environments with pregnancy and preterm infant health outcomes and propose strategies to address harmful exposures that affect families across the lifespan. Full article
(This article belongs to the Special Issue The Implications of Preterm Birth for Health and Wellbeing over the Life Course)
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