Mobile-enhanced Family Integrated Care for preterm infants: A qualitative study of parents' views.

Objective: The Family Integrated Care (FICare) model improves outcomes for preterm infants and parents compared with family-centered care (FCC). FICare with mobile technology (mFICare) may improve uptake and impact. Research on FICare in the United States (US) is scarce and little is known about parents' experience. Methods: We conducted qualitative interviews with nine parents, exploring their NICU experiences, participation in and perceptions of the mFICare program. A directed content analysis approach was used, and common themes were derived from the data. Results: Overall, parents had positive NICU experiences and found mFICare helpful in meeting three common parenting priorities: actively caring for their infant, learning how to care for their infant, and learning about the clinical status of their infant. They described alignment and misalignment with mFICare components relative to their personal parenting priorities and offered suggestions for improvement. Nurses were noted to play key roles in providing or facilitating parent support and encouragement to participate in mFICare and parenting activities. Conclusion: The mFICare program showed potential for parental acceptance and participation in US NICUs. Innovation: The mFICare model is an innovation in neonatal care that can advance the consistent delivery of NICU family-centered care planning and caregiving.Clinical Trial Registration:NCT03418870 01/02/2018.

Mobile-Enhanced Family-Integrated Care for Preterm Infants: Nurse and Physician Views About Implementation.

BACKGROUND: The mobile-enhanced family-integrated care (mFICare) model addresses inconsistencies in family-centered care (FCC) delivery, with an evidence-based bundle of staff training, parent participation in rounds, parent classes, parent peer mentors, expanded role for parents in infant caregiving, and a parent-designed app. PURPOSE: Our aim was to explore the views of neonatal intensive care unit (NICU) nurses and physicians about mFICare implementation, including what worked well and what could be improved. METHODS: As part of a larger study to compare mFICare with FCC, we invited registered nurses, nurse practitioners, and fellow and attending physicians at the 3 study sites to participate in a survey about mFICare implementation. Data were analyzed with descriptive statistics and thematic analysis. RESULTS: The majority of the 182 respondents with experience delivering mFICare positively rated parent-led rounds, parent classes, parent skills acquisition, and the nurse-family relationship resulting from participation in mFICare. Respondents were less familiar or neutral regarding the parent peer mentor and app components of mFICare. Most respondents agreed that the mFICare program improved parent empowerment, and they shared suggestions for optimizing implementation. Physicians experienced more challenges with parent participation in rounds than nurses. Three themes emerged from the free-text data related to emotional support for parents, communication between staff and parents, and the unique experiences of families receiving mFICare. IMPLICATIONS FOR PRACTICE AND RESEARCH: The mFICare program was overall acceptable to nurses and physicians, and areas for improvement were identified. With implementation refinement, mFICare can become a sustainable model to enhance delivery of FCC in NICUs.

Maternal mental health after infant discharge: a quasi-experimental clinical trial of family integrated care versus family-centered care for preterm infants in U.S. NICUs.

BACKGROUND: Involvement in caregiving and tailored support services may reduce the risk of mental health symptoms for mothers after their preterm infant's neonatal intensive care unit (NICU) discharge. We aimed to compare Family-Centered Care (FCC) with mobile-enhanced Family-Integrated Care (mFICare) on post-discharge maternal mental health symptoms. METHOD: This quasi-experimental study enrolled preterm infant (≤ 33 weeks)/parent dyads from three NICUs into sequential cohorts: FCC or mFICare. We analyzed post-discharge symptoms of perinatal post-traumatic stress disorder (PTSD) and depression using intention-to-treat and per protocol approaches. RESULTS: 178 mothers (89 FCC; 89 mFICare) completed measures. We found no main effect of group assignment. We found an interaction between group and stress, indicating fewer PTSD and depression symptoms among mothers who had higher NICU-related stress and received mFICare, compared with mothers who had high stress and received FCC (PTSD: interaction ß=-1.18, 95% CI: -2.10, -0.26; depression: interaction ß=-0.76, 95% CI: -1.53, 0.006). Per protocol analyses of mFICare components suggested fewer PTSD and depression symptoms among mothers who had higher NICU stress scores and participated in clinical team rounds and/or group classes, compared with mothers who had high stress and did not participate in rounds or classes. CONCLUSION: Overall, post-discharge maternal mental health symptoms did not differ between the mFICare and FCC groups. However, for mothers with high levels of stress during the NICU stay, mFICare was associated with fewer post-discharge PTSD and depression symptoms.

Parent Readiness for Their Preterm Infant's Neonatal Intensive Care Unit Discharge.

This study aims to examine the influence of hospital experience factors on parental discharge readiness, accounting for key background characteristics. Parents/guardians of infants 33 weeks of gestation or less at birth receiving neonatal intensive care at 6 sites were enrolled from April 2017 to August 2018. Participants completed surveys at enrollment, 3 weeks later, and at discharge. Multiple regression analysis assessed relationships between parental experience, well-being, and perceived readiness for infant discharge, adjusting for socioenvironmental, infant clinical, and parent demographic characteristics. Most (77%) of the 139 parents reported high levels of readiness for their infant's discharge and 92% reported high self-efficacy at discharge. The multiple regression model accounted for 40% of the variance in discharge readiness. Perceptions of family-centered care accounted for 12% of the variance; measures of parent well-being, anxiety, and parenting self-efficacy accounted for an additional 16% of the variance; parent characteristics accounted for an additional 9%; and infant characteristics accounted for less than 3% of the variance. Parental perceptions of the family-centeredness of the hospital experience, anxiety, and parenting self-efficacy accounted for a substantial proportion of the variance in readiness for discharge scores among parents of preterm infant. These influential perceptions are potentially modifiable by nursing-led interventions.

Relationship between social support and post-discharge mental health symptoms in mothers of preterm infants.

BACKGROUND: Social support is associated with decreased symptoms of postpartum mood and anxiety disorders (PMAD) in mothers of healthy infants, but less is known about social support and PMADs in mothers with preterm infants. The purpose of this study was to examine the relationship between social support and symptoms of PMADs reported by mothers in the months following hospital discharge of their preterm infant. METHODS: Mothers of infants less than 33 weeks gestational age were enrolled from neonatal intensive care units (NICU) at 6 sites. Mothers completed PMAD measures of depression, anxiety and post-traumatic stress approximately 3 months following their infant's discharge. Multivariable regression was used to evaluate relationships between social support and PMAD measures. RESULTS: Of 129 mothers, 1 in 5 reported clinically significant PMAD symptoms of: depression (24%), anxiety (19%), and post-traumatic stress (20%). Social support was strongly inversely associated with all 3 PMADs. Social support explained between 21% and 26% of the variance in depression, anxiety and post-traumatic stress symptoms. CONCLUSION: Increased social support may buffer PMAD symptoms in mothers of preterm infants after discharge. Research is needed to determine effective screening and interventions aimed at promoting social support for all parents during and following their infant's hospitalisation.

Neonatal outcomes from a quasi-experimental clinical trial of Family Integrated Care versus Family-Centered Care for preterm infants in U.S. NICUs.

BACKGROUND: Family Integrated Care (FICare) benefits preterm infants compared with Family-Centered Care (FCC), but research is lacking in United States (US) Neonatal Intensive Care Units (NICUs). The outcomes for infants of implementing FICare in the US are unknown given differences in parental leave benefits and health care delivery between the US and other countries where FICare is used. We compared preterm weight and discharge outcomes between FCC and mobile-enhanced FICare (mFICare) in the US. METHODS: In this quasi-experimental study, we enrolled preterm infant (≤ 33 weeks)/parent dyads from 3 NICUs into sequential cohorts: FCC or mFICare. Our primary outcome was 21-day change in weight z-scores. Our secondary outcomes were nosocomial infection, bronchopulmonary dysplasia (BPD), retinopathy of prematurity (ROP), and human milk feeding (HMF) at discharge. We used intention-to-treat analyses to examine the effect of the FCC and mFICare models overall and per protocol analyses to examine the effects of the mFICare intervention components. FINDINGS: 253 infant/parent dyads participated (141 FCC; 112 mFICare). There were no parent-related adverse events in either group. In intention-to-treat analyses, we found no group differences in weight, ROP, BPD or HMF. The FCC cohort had 2.6-times (95% CI: 1.0, 6.7) higher odds of nosocomial infection than the mFICare cohort. In per-protocol analyses, we found that infants whose parents did not receive parent mentoring or participate in rounds lost more weight relative to age-based norms (group-difference=-0.128, CI: -0.227, -0.030; group-difference=-0.084, CI: -0.154, -0.015, respectively). Infants whose parents did not participate in rounds or group education had 2.9-times (CI: 1.0, 9.1) and 3.8-times (CI: 1.2, 14.3) higher odds of nosocomial infection, respectively. CONCLUSION: We found indications that mFICare may have direct benefits on infant outcomes such as weight gain and nosocomial infection. Future studies using implementation science designs are needed to optimize intervention delivery and determine acute and long-term infant and family outcomes. CLINICAL TRIAL REGISTRATION: NCT03418870 01/02/2018.

Improving Family-Centered Care for Infants in Neonatal Intensive Care Units: Recommendations From Frontline Healthcare Professionals.

BACKGROUND: Family-centered care is a philosophy and healthcare delivery model adopted by many neonatal intensive care units (NICUs) worldwide, yet practice varies widely. PURPOSE: The aim of this study was to synthesize recommendations from frontline NICU healthcare professionals regarding family-centered care. METHODS: Data were obtained from the baseline phase of a multicenter quasi-experimental study comparing usual family-centered NICU care (baseline) with mobile-enhanced family integrated care (intervention). Members of the NICU clinical care team completed a family-centered care survey and provided free-text comments regarding practice of family-centered care in their NICU and recommendations for improvement. The comments were analyzed using a directed content analysis approach by a research team that included NICU nurses and parents. RESULTS: Of the 382 NICU healthcare providers from 6 NICUs who completed the survey, 68 (18%) provided 89 free-text comments/recommendations about family-centered care. Almost all comments were provided by nurses (91%). Six main themes were identified: language translation; communication between staff and families; staffing and workflow; team culture and leadership; education; and NICU environment. The need for greater resources for staffing, education, and environmental supports was prominent among the comments, as was team culture and staff-parent communications. IMPLICATIONS FOR PRACTICE: The NICU healthcare professionals identified a range of issues that support or impede delivery of family-centered care and provided actionable recommendations for improvement. IMPLICATIONS FOR RESEARCH: Future research should include economic analyses that will enable determination of the return on investment so that NICUs can better justify the human and capital resources needed to implement high-quality family-centered care.

What parents want to know about caring for their preterm infant: A longitudinal descriptive study.

OBJECTIVES: To describe the characteristics of parent knowledge needs and skill acquisition over the course of their infant's neonatal intensive care unit hospitalization. METHODS: 148 parents/guardians of infants ≤33 week gestation enrolled during the usual care phase of a multi-site quasi-experimental study, completing weekly surveys about their learning needs for the coming week and skills learned in the past week. RESULTS: The topics of most interest or concern for parents included feeding their infant and their infant's medical course. Knowledge needs varied by phase of hospitalization (early, middle, late) and by parent age, prior parenting experience, infant gestational age and hospital length of stay. The most common skills learned related to feeding and basic infant care. The number of skills parents reported learning each week varied by parent age, gender, and education. CONCLUSIONS: Parents of preterm infants expressed specific learning needs and acquisition of skills that varied over the course of the hospitalization and by parent and infant characteristics. PRACTICE IMPLICATIONS: The findings can be used to improve parent learning experiences so that they can become full partners in their infant's caregiving and are better prepared to care for their infant after discharge. STUDY REGISTRATION: ClinicalTrials.gov, ID NCT03418870.

A Multisite Survey of NICU Healthcare Professionals' Perceptions About Family-Centered Care.

BACKGROUND: Family-centered care contributes to improved outcomes for preterm and ill infants. Little is known about the perceptions of neonatal intensive care unit (NICU) healthcare professionals regarding the degree to which their NICU practices or values family-centered care. PURPOSE: The aims of this study were to describe attitudes and beliefs of NICU healthcare professionals about family-centered care and to explore professional characteristics that might influence those views. METHODS: Data were derived from the baseline phase of a multicenter quasi-experimental study comparing usual family-centered NICU care with mobile-enhanced family-integrated care. Neonatal intensive care unit healthcare professionals completed the Family-Centered Care Questionnaire-Revised (FCCQ-R), a 45-item measure of 9 core dimensions of Current Practice and Necessary Practice for family-centered care. RESULTS: A total of 382 (43%) NICU healthcare professionals from 6 NICUs completed 1 or more of the FCCQ-R subscales, 83% were registered nurses. Total and subscale scores on the Necessary Practice scale were consistently higher than those on the Current Practice scale for all dimensions of family-centered care (mean: 4.40 [0.46] vs 3.61 [0.53], P < .001). Only years of hospital experience and NICU site were significantly associated with Current Practice and Necessary Practice total scores. IMPLICATIONS FOR PRACTICE: Ongoing assessment of the perceptions of NICU healthcare professionals regarding their current practice and beliefs about what is necessary for the delivery of high-quality family-centered care can inform NICU education, quality improvement, and maintenance of family-centered care during the COVID-19 pandemic. IMPLICATIONS FOR RESEARCH: Further research is needed to identify additional factors that predict family-centered care perceptions and behaviors.

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.

BACKGROUND: Family 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. METHODS: This 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). DISCUSSION: This 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 REGISTRATION: ClinicalTrials.gov, ID NCT03418870. Retrospectively registered on December 18, 2017.

Survival of severe congenital diaphragmatic hernia has morbid consequences.

BACKGROUND/PURPOSE: Fetal tracheal occlusion (TO) was developed in an attempt to enhance prenatal lung growth and improve survival in fetuses with severe congenital diaphragmatic hernia (CDH). We conducted a randomized, controlled clinical trial in 24 fetuses with severe left CDH (liver herniated into the thorax and low lung-to-head ratio) to compare survival after endoscopic fetal TO vs standard perinatal care (control) and prospectively followed up the 16 survivors (9 control, 7 TO) to compare neurodevelopmental, respiratory, surgical, growth, and nutritional outcomes. METHODS: At 1 and 2 years old, subjects underwent evaluation consisting of medical and neurological history and physical, developmental testing, nutritional assessment, oxygen saturation and pulmonary function testing, chest radiograph, and echocardiogram. Growth and developmental measures were corrected for prematurity. Data were analyzed by Mann-Whitney rank sum test, Fisher's Exact test, and logistic and linear regression. RESULTS: Infants with TO were significantly more premature at birth (control vs TO, 37.4 +/- 1.0 vs 31.1 +/- 1.7 weeks; P < .01). Growth failure ( z score for weight <2 SDs below mean) was severe in both groups at 1 year of age (control vs TO, 56% vs 86%; P = .31). There was considerable catch-up growth by age 2 years (growth failure: control vs TO, 22% vs 33%; P = .19). There were no differences in other growth parameters. There were also no differences in neurodevelopmental outcome at 1 and 2 years. Supplemental oxygen at hospital discharge was a significant predictor of worse neurodevelopmental outcome at 1 and 2 years old (P = .05 and P = .02, respectively). Hearing loss requiring amplification has been diagnosed in 44% of the group (control vs TO, 44% vs 43%; P = 1.0). CONCLUSIONS: In this group of infants with severe CDH, there were no differences in outcome at 2 years old despite significant prematurity in the TO group. Oxygen supplementation at hospital discharge identified the most vulnerable group with respect to neurodevelopmental outcome, but all infants had significant growth failure, and hearing impairment is a substantial problem in this population. Severe CDH carries significant risk of chronic morbidity.