Child and Family Outcomes and Experiences Related to Family-Centered Care Interventions for Hospitalized Pediatric Patients: A Systematic Review.

BACKGROUND/OBJECTIVES: Family-centered care (FCC) is the recommended model for pediatric inpatient care. Our overall aim was to conduct a narrative synthesis of the contemporary published research on the effectiveness of FCC interventions for pediatric inpatients. Our specific objective was to critique studies of inpatient pediatric FCC interventions that evaluated child or parent outcomes. METHODS: We searched five databases (Pubmed, CINAHL, Embase, PsychInfo, and Web of Science) for peer-reviewed research published from 1 January 2017 to 6 February 2024. Independent reviewers evaluated each study based on pre-specified inclusion and exclusion criteria, then extracted and narratively synthesized the data. RESULTS: We found 16 studies of 15 interventions conducted in six countries. The studies were quantitative (n = 11), qualitative (n = 3), and mixed methods (n = 2), with most designs being of low to moderate quality based on a modified Mixed-Methods Appraisal Tool. Interventions included family-centered rounds, parent-focused health information technology, education, patient navigation, parent-peer support, partnership, and parent participation in caregiving. Most studies found significant improvements in parents well-being, knowledge, and participation, as well as decreased stress and anxiety with the FCC interventions compared to usual care. One study found no differences in child outcomes (infant feeding, length of stay) between usual care and a parent-participation intervention. CONCLUSIONS: Although FCC interventions led to many improved outcomes for parents, there were few well-designed comparison studies using validated tools and well-defined interventions. Higher quality research is needed to promote greater uptake and sustainability of FCC interventions globally

What about the men? Perinatal experiences of men of color whose partners were at risk for preterm birth, a qualitative study.

BACKGROUND:Preterm birth in the United States is associated with maternal clinical factors such as diabetes, hypertension and social factors including race, ethnicity, and socioeconomic status. In California, 8.7% of all live births are preterm, with African American and Black families experiencing the greatest burden. The impact of paternal factors on birth outcomes has been studied, but little is known about the experience of men of color (MOC). The purpose of this study was to explore the experiences of MOC who are partners to women at medical and social risk for preterm birth. METHODS:This study used a qualitative research design and focus group methods. The research was embedded within an existing study exploring experiences of women of color at risk for preterm birth conducted by the California Preterm Birth Initiative. RESULTS:Twelve MOC participated in the study and among them had 9 preterm children. Four themes emerged from thematic analysis of men's experiences: (1) "Being the Rock": Providing comfort and security; (2) "It's a blessing all the way around": Keeping faith during uncertainty; (3) "Tell me EVERYTHING": Unmet needs during pregnancy and delivery; (4) "Like a guinea pig": Frustration with the healthcare system. Participants identified many barriers to having a healthy pregnancy and birth including inadequate support for decision making, differential treatment, and discrimination. CONCLUSIONS:This study shows novel and shared narratives regarding MOC experiences during pregnancy, birth, and postpartum periods. Healthcare providers have an essential role to acknowledge MOC, their experience of discrimination and mistrust, and to assess needs for support that can improve birth outcomes. As MOC and their families are at especially high social and medical risk for preterm birth, their voice and experience should be central in all future research on this topic

Comparison of family centered care with family integrated care and mobile technology (mFICare) on preterm infant and family outcomes: a multi-site quasi-experimental clinical trial protocol.

BackgroundFamily Centered Care (FCC) has been widely adopted as the framework for caring for infants in the Neonatal Intensive Care Unit (NICU) but it is not uniformly defined or practiced, making it difficult to determine impact. Previous studies have shown that implementing the Family Integrated Care (FICare) intervention program for preterm infants in the NICU setting leads to significant improvements in infant and family outcomes. Further research is warranted to determine feasibility, acceptability and differential impact of FICare in the US context. The addition of a mobile application (app) may be effective in providing supplemental support for parent participation in the FICare program and provide detailed data on program component uptake and outcomes.MethodsThis exploratory multi-site quasi-experimental study will compare usual FCC with mobile enhanced FICare (mFICare) on growth and clinical outcomes of preterm infants born at or before 33 weeks gestational age, as well as the stress, competence and self-efficacy of their parents. The feasibility and acceptability of using mobile technology to gather data about parent involvement in the care of preterm infants receiving FCC or mFICare as well as of the mFICare intervention will be evaluated (Aim 1). The effect sizes for infant growth (primary outcome) and for secondary infant and parent outcomes at NICU discharge and three months after discharge will be estimated (Aim 2).DiscussionThis study will provide new data about the implementation of FICare in the US context within various hospital settings and identify important barriers, facilitators and key processes that may contribute to the effectiveness of FICare. It will also offer insights to clinicians on the feasibility of a new mobile application to support parent-focused research and promote integration of parents into the NICU care team in US hospital settings.Trial registrationClinicalTrials.gov, ID NCT03418870. Retrospectively registered on December 18, 2017

Research priorities of women at risk for preterm birth: findings and a call to action.

BACKGROUND:Traditional hierarchical approaches to research give privilege to small groups with decision-making power, without direct input from those with lived experience of illness who bear the burden of disease. A Research Justice framework values the expertise of patients and communities as well as their power in creating knowledge and in decisions about what research is conducted. Preterm birth has persisted at epidemic levels in the United States for decades and disproportionately affects women of color, especially Black women. Women of color have not been included in setting the agenda regarding preterm birth research. METHODS:We used the Research Priorities of Affected Communities protocol to elicit and prioritize potential research questions and topics directly from women of color living in three communities that experience disproportionately high rates of preterm birth. Women participated in two focus group sessions, first describing their healthcare experiences and generating lists of uncertainties about their health and/or healthcare during pregnancy. Women then participated in consensus activities to achieve 'top-priority' research questions and topic lists. The priority research questions and topics produced by each group were examined within and across the three regions for similarities and differences. RESULTS:Fifty-four women participated in seven groups (14 sessions) and generated 375 researchable questions, clustered within 22 topics and four overarching themes: Maternal Health and Care Before, During, and After Pregnancy; Newborn Health and Care of the Preterm Baby; Understanding Stress and Interventions to Prevent or Reduce Stress; and Interpersonal and Structural Health Inequities. The questions and topics represent a wide range of research domains, from basic science, translational, clinical, health and social care delivery to policy and economic research. There were many similarities and some unique differences in the questions, topics and priorities across the regions. CONCLUSIONS:These findings can be used to design and fund research addressing unanswered questions that matter most to women at high risk for preterm birth. Investigators and funders are strongly encouraged to incorporate women at the front lines of the preterm birth epidemic in research design and funding decisions, and more broadly, to advance methods to deepen healthcare research partnerships with affected communities

I.C.E.: An Ultra-Cold Atom Source for Long-Baseline Interferometric Inertial Sensors in Reduced Gravity

The accuracy and precision of current atom-interferometric inertialsensors rival state-of-the-art conventional devices using artifact-based test masses . Atomic sensors are well suited for fundamental measurements of gravito-inertial fields. The sensitivity required to test gravitational theories can be achieved by extending the baseline of the interferometer. The I.C.E. (Interf\'erom\'etrie Coh\'erente pour l'Espace) interferometer aims to achieve long interrogation times in compact apparatus via reduced gravity. We have tested a cold-atom source during airplane parabolic flights. We show that this environment is compatible with free-fall interferometric measurements using up to 4 second interrogation time. We present the next-generation apparatus using degenerate gases for low release-velocity atomic sources in space-borne experiments

The Withdrawal Assessment Tool–1 (WAT–1): An Assessment Instrument for Monitoring Opioid and Benzodiazepine Withdrawal Symptoms in Pediatric Patients

Objective: To develop and test the validity and reliability of the Withdrawal Assessment Tool–1 for monitoring opioid and benzodiazepine withdrawal symptoms in pediatric patients. Design: Prospective psychometric evaluation. Pediatric critical care nurses assessed eligible at-risk pediatric patients for the presence of 19 withdrawal symptoms and rated the patient’s overall withdrawal intensity using a Numeric Rating Scale where zero indicated no withdrawal and 10 indicated worst possible withdrawal. The 19 symptoms were derived from the Opioid and Benzodiazepine Withdrawal Score, the literature and expert opinion. Setting: Two pediatric intensive care units in university-affiliated academic children’s hospitals. Patients: Eighty-three pediatric patients, median age 35 mos (interquartile range: 7 mos−10 yrs), recovering from acute respiratory failure who were being weaned from more than 5 days of continuous infusion or round-the-clock opioid and benzodiazepine administration. Interventions: Repeated observations during analgesia and sedative weaning. A total of 1040 withdrawal symptom assessments were completed, with a median (interquartile range) of 11 (6–16) per patient over 6.6 (4.8−11) days. Measurements and Main Results: Generalized linear modeling was used to analyze each symptom in relation to withdrawal intensity ratings, adjusted for site, subject, and age group. Symptoms with high redundancy or low levels of association with withdrawal intensity ratings were dropped, resulting in an 11-item (12-point) scale. Concurrent validity was indicated by high sensitivity (0.872) and specificity (0.880) for Withdrawal Assessment Tool–1 \u3e 3 predicting Numeric Rating Scale \u3e 4. Construct validity was supported by significant differences in drug exposure, length of treatment and weaning from sedation, length of mechanical ventilation and intensive care unit stay for patients with Withdrawal Assessment Tool–1 scores \u3e 3 compared with those with lower scores. Conclusions: The Withdrawal Assessment Tool–1 shows excellent preliminary psychometric performance when used to assess clinically important withdrawal symptoms in the pediatric intensive care unit setting. Further psychometric evaluation in diverse at-risk groups is needed

Parents Experiences of Racism in the Neonatal Intensive Care Unit.

Few studies have investigated parents experiences with racism in the neonatal intensive care unit (NICU). Our objective was to explore how parents perceive their interactions with NICU staff and if/how racism in the NICU was experienced. Parents of infants receiving care in an urban NICU completed fixed choice surveys regarding their experiences and demographics, with 6 open-ended questions to elaborate on their fixed-choice responses. Using a constant comparative method informed by Constructivist Grounded Theory, we identified 3 main themes from the comments provided by 97 respondents: Care and harm coexisting, racism often manifesting as neglectful care, and the power differential is most impactful during times of parent advocacy. Parents spoke positively regarding their experiences and also reported disparate treatment attributed to their racial/ethnic identity. Racism was experienced by inappropriate comments and apathy toward parent requests, occurring during intimate interactions between staff and parents. Descriptions of parental advocacy efforts highlighted the lack of power they held in relation to the NICU staff. We recommend strengthening the focus on equity and mitigating power imbalances in the NICU