Research

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30 pages, 913 KiB

Open AccessArticle

Uncertainty and the NICU Experience: A Qualitative Evaluation of Family and Provider Perspectives

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Katharine Griffin Gorsky

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Children 2023, 10(11), 1745; https://doi.org/10.3390/children10111745 - 27 Oct 2023

Viewed by 717

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

Open AccessArticle

Organizational Health Literacy as a Tool for Health Equity: Application in a High-Risk Infant Follow-Up Program

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Children 2023, 10(10), 1658; https://doi.org/10.3390/children10101658 - 06 Oct 2023

Viewed by 824

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

Open AccessArticle

The Role of Distance from Home to Hospital on Parental Experience in the NICU: A Qualitative Study

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Children 2023, 10(9), 1576; https://doi.org/10.3390/children10091576 - 20 Sep 2023

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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

Open AccessArticle

Neurodevelopmental, Mental Health, and Parenting Issues in Preterm Infants

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Children 2023, 10(9), 1565; https://doi.org/10.3390/children10091565 - 18 Sep 2023

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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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16 pages, 1090 KiB

Open AccessReview

Accelerated Aging and the Life Course of Individuals Born Preterm

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Children 2023, 10(10), 1683; https://doi.org/10.3390/children10101683 - 13 Oct 2023

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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

Open AccessReview

A Narrative Review of the Association between Prematurity and Attention-Deficit/Hyperactivity Disorder and Accompanying Inequities across the Life-Course

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Yarden S. Fraiman

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Genevieve Guyol

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Dolores Acevedo-Garcia

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Children 2023, 10(10), 1637; https://doi.org/10.3390/children10101637 - 30 Sep 2023

Viewed by 731

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

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7 pages, 206 KiB

Open AccessViewpoint

Parent Perspectives: Part 2—Considerations for the Transition Home Post-NICU Discharge

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Jessica N. DiBari

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LaToshia Rouse

Children 2023, 10(12), 1835; https://doi.org/10.3390/children10121835 - 22 Nov 2023

Viewed by 336

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

Open AccessViewpoint

Parent Perspectives: Part 1—Considerations for Changing the NICU Culture

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Jessica N. DiBari

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LaToshia Rouse

Children 2023, 10(11), 1735; https://doi.org/10.3390/children10111735 - 26 Oct 2023

Viewed by 635

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

Open AccessCommentary

Place-Based Strategies Addressing Neighborhood Environments to Improve Perinatal and Preterm Infant Outcomes

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Children 2023, 10(10), 1646; https://doi.org/10.3390/children10101646 - 02 Oct 2023

Viewed by 566

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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