Parents' Experiences With Infant Pain Management in the NICU.

OBJECTIVES: To explore parents' experiences of pain care and their participation in their infants' pain management in the NICU and to further validate the concepts of the parental involvement in neonatal pain management model. DESIGN: Descriptive qualitative study. SETTING: Tertiary Level 3 NICU in an academically affiliated teaching hospital in Toronto, Canada. PARTICIPANTS: A purposeful sample of 10 parents of infants in the NICU from 2019 to 2022. METHODS: We conducted one-on-one semistructured interviews with participants. We used the parental involvement in neonatal pain management framework as the conceptual model. We coded interview data using deductive thematic analysis and created inductive codes if data did not align with the conceptual model. RESULTS: We identified one overarching theme: Competence and Confidence of Parents. Within this overarching theme, we identified the following themes: Health Care Providers as Gatekeepers, Beliefs of Parents, Information/Support, Parent-Infant Proximity, and Stress and Anxiety. Data supported the relevance of elements in the parental involvement in neonatal pain management model. CONCLUSIONS: Health care providers play a key role in determining when and how parents comfort their infants. In addition, the beliefs of parents, information and/or support, and their proximity to their infants affected parents' competence and confidence in providing pain management.

Life After Neonatal Seizures: Characterizing the Longitudinal Parent Experience.

BACKGROUND: Parents of neonates with seizures report persistent symptoms of depression, anxiety, and posttraumatic stress. We aimed to characterize the parent experience of caring for children impacted by neonatal seizures, including longitudinal assessment across childhood. METHODS: This prospective, observational, multicenter study was conducted at Neonatal Seizure Registry (NSR) sites in partnership with the NSR Parent Advisory Panel. Parents completed surveys at discharge; 12, 18, and 24 months; and 3, 4, 5, 7, and 8 years. Surveys included demographic information and open-ended questions targeting parent experience. A conventional content analysis approach was used. RESULTS: A total of 320 caregivers completed at least one open-ended question, with the majority of respondents at discharge (n = 142), 12 months (n = 169), 18 months (n = 208), and 24 months (n = 245). We identified the following three primary themes. (1) Personal Burden of Care: Parents experienced emotional distress, financial strain, physical demands, and fears for their child's unknown outcome; (2) Managing Day-to-Day Life: Parents described difficulties navigating their parenting role, including managing their child's challenging behaviors and understanding their child's needs amid neurodevelopmental impairment; (3) My Joys as a Parent: Parents valued bonding with their child, being a caregiver, and watching their child's personality grow. CONCLUSIONS: Parents of children impacted by neonatal seizures face persistent challenges, which are interwoven with the joys of being a parent. Our findings suggest that future interventions should promote resiliency, address caregivers' psychosocial needs longitudinally, and provide enhanced support for parents caring for children with medical complexity.

Parents Experiences of Racism in the Neonatal Intensive Care Unit.

Few studies have investigated parent's 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.

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.

Family integrated care: State of art and future perspectives.

Family integrated care (FICare) represents a contemporary approach to health care that involves the active participation of families within the healthcare team. It empowers families to acquire knowledge about the specialised care required for their newborns admitted to neonatal intensive care unit (NICU) and positions them as primary caregivers. Healthcare professionals in this model act as mentors and facilitators during the hospitalisation period. This innovative model has exhibited notable enhancements in both short- and long-term health outcomes for neonates, alongside improved psychological well-being for families and heightened satisfaction among healthcare professionals. Initially designed for stable premature infants and their families, FICare has evolved to include critically ill premature and full-term infants. Findings from recent studies affirm the safety and feasibility of FICare as a NICU-wide model of care, benefiting all infants and families. The envisioned expansion of FICare focusses on sustainability and extending its implementation, recognising the necessity for tailored adaptations to suit varying diverse cultural and socio-economic contexts.

Factors associated with posttraumatic stress and anxiety among the parents of babies admitted to neonatal care: a systematic review.

BACKGROUND: Posttraumatic stress (PTS) and anxiety are common mental health problems among parents of babies admitted to a neonatal unit (NNU). This review aimed to identify sociodemographic, pregnancy and birth, and psychological factors associated with PTS and anxiety in this population. METHOD: Studies published up to December 2022 were retrieved by searching Medline, Embase, PsychoINFO, Cumulative Index to Nursing and Allied Health electronic databases. The modified Newcastle-Ottawa Scale for cohort and cross-sectional studies was used to assess the methodological quality of included studies. This review was pre-registered in PROSPERO (CRD42021270526). RESULTS: Forty-nine studies involving 8,447 parents were included; 18 studies examined factors for PTS, 24 for anxiety and 7 for both. Only one study of anxiety factors was deemed to be of good quality. Studies generally included a small sample size and were methodologically heterogeneous. Pooling of data was not feasible. Previous history of mental health problems (four studies) and parental perception of more severe infant illness (five studies) were associated with increased risk of PTS, and had the strongest evidence. Shorter gestational age (≤ 33 weeks) was associated with an increased risk of anxiety (three studies) and very low birth weight (< 1000g) was associated with an increased risk of both PTS and anxiety (one study). Stress related to the NNU environment was associated with both PTS (one study) and anxiety (two studies), and limited data suggested that early engagement in infant's care (one study), efficient parent-staff communication (one study), adequate social support (two studies) and positive coping mechanisms (one study) may be protective factors for both PTS and anxiety. Perinatal anxiety, depression and PTS were all highly comorbid conditions (as with the general population) and the existence of one mental health condition was a risk factor for others. CONCLUSION: Heterogeneity limits the interpretation of findings. Until clearer evidence is available on which parents are most at risk, good communication with parents and universal screening of PTS and anxiety for all parents whose babies are admitted to NNU is needed to identify those parents who may benefit most from mental health interventions.

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.

Home Visiting in California During the First Two Years of the COVID-19 Pandemic: A Repeated Cross-Sectional Study of Low-Income Pregnant and Parenting Caregivers.

CONTEXT: Prior to the COVID-19 pandemic, home visiting services for low-income children and families were provided almost entirely in person. Little is known about clients' experience of home visiting provided virtually by video or phone instead of, or in addition to, in-person home visiting. OBJECTIVE: To explore the views of clients in the California Work Opportunity and Responsibility to Kids (CalWORKs) Home Visiting Program (HVP) across California during the first 2 years of the pandemic. SETTING: Forty counties in California. PARTICIPANTS: CalWORKs HVP clients, currently enrolled or who left the program in the 6 months prior to each survey. MAIN OUTCOME MEASURES: Clients' ratings of participation in and experiences with the CalWORKs HVP services, as well as unmet needs. RESULTS: We collected 1617 surveys from clients across 3 survey rounds. Pandemic-related restrictions resulted in decreased frequency of home visits and a shift from in person to primarily virtual visits. As in-person home visit frequency decreased, there were significant declines in clients' level of agreement that they learned child development skills (P = .04), received parenting services (P = .015) or activities (P < .001), or received infant and child nutrition services (P = .003). There were no declines in level of agreement that the CalWORKs HVP improved the quality of life of clients and their children. DISCUSSION: Clients consistently rated the CalWORKs HVP as positively contributing to their and their children's well-being, regardless of the shift from in person to virtual visits. Clients' participation in some program components decreased over the evaluation. However, it is unknown if clients received fewer referrals, were hesitant to pursue the referrals, or if fewer services were available. Continued research is needed to evaluate the merits and disadvantages of virtual visits as in-person home visits resume postpandemic.

Barriers to Accessing Paid Parental Leave Among Birthing Parents With Perinatal Health Complications: A Multiple-Methods Study.

INTRODUCTION: Even in the small number of U.S. states with paid parental leave (PPL) programs, studies have found awareness of PPL remains low and unevenly distributed among parents. Moreover, little is known about whether parents with perinatal health complications have unmet needs in obtaining information about and support for accessing parental leave during that time. This study aims to address this research gap. Given the strong evidence linking paid leave with improvements in maternal and infant health, it is critical to evaluate access among vulnerable populations. METHODS: We used a multiple methods approach, including a subset of the 2016-2017 Bay Area Parental Leave Survey of Mothers (analytic sample = 1,007) and interview data from mothers who stayed at a neonatal intensive care unit in 2019 (n = 7). All participants resided at that time in California, a state that offers PPL. The independent variable for the survey analysis was a composite measure of perinatal complications, quantified as binary with a value of 1 if respondents reported experiencing any of the four complications: poor maternal mental health during or after pregnancy, premature birth, or poor infant health. Dependent variables for the survey analysis measured lack of support or information for accessing PPL. We used linear probability models to assess the relationship between perinatal complications and PPL support. Thematic analysis was conducted with the interview data to understand how perinatal complications shape the process of accessing PPL. RESULTS: Survey results revealed that parents with perinatal complications had a lower understanding of PPL benefits and low overall support for accessing leave, including from employers, compared with parents without perinatal complications. From interviews, we learned that perinatal complications present unique challenges to parents navigating PPL. There were multiple entities involved in managing leave and providing information, such as the benefits coordinator and employers. Supervisors were reported as providers of critical emotional and financial support. CONCLUSIONS: Taken together, the findings from surveys and interviews suggest that health care and human resources personnel should be better equipped to provide information and support, particularly to those who experience perinatal complications and might struggle to complete paperwork while facing health challenges.

Midwives' experience of telehealth and remote care: a systematic mixed methods review.

INTRODUCTION: Increasing the midwifery workforce has been identified as an evidence-based approach to decrease maternal mortality and reproductive health disparities worldwide. Concurrently, the profession of midwifery, as with all healthcare professions, has undergone a significant shift in practice with acceleration of telehealth use to expand access. We conducted a systematic literature review to identify and synthesize the existing evidence regarding how midwives experience, perceive and accept providing sexual and reproductive healthcare services at a distance with telehealth. METHODS: Five databases were searched, PubMed, CINHAL, PsychInfo, Embase and the Web of Science, using search terms related to 'midwives', 'telehealth' and 'experience'. Peer-reviewed studies with quantitative, qualitative or mixed methods designs published in English were retrieved and screened. Studies meeting the inclusion criteria were subjected to full-text data extraction and appraisal of quality. Using a convergent approach, the findings were synthesized into major themes and subthemes. RESULTS: After applying the inclusion/exclusion criteria, 10 articles on midwives' experience of telehealth were reviewed. The major themes that emerged were summarized as integrating telehealth into clinical practice; balancing increased connectivity; challenges with building relationships via telehealth; centring some patients while distancing others; and experiences of telehealth by age and professional experience. CONCLUSIONS: Most current studies suggest that midwives' experience of telehealth is deeply intertwined with midwives' experience of the response to COVID-19 pandemic in general. More research is needed to understand how sustained use of telehealth or newer hybrid models of telehealth and in-person care are perceived by midwives.

Parent and staff perceptions of racism in a single-center neonatal intensive care unit.

IMPACT: In alignment with previous literature, NICU parents reported experiencing racism and NICU staff reported witnessing racism in the NICU. Our study also uniquely describes personal experiences with racism by staff in the NICU. NICU staff reported witnessing and experiencing racism more often than parents reported. Black staff reported witnessing and experiencing more racism than white staff. Differences in reporting is likely influenced by variations in lived experience, social identities, psychological safety, and levels of awareness. Future studies are necessary to prevent and accurately measure racism in the NICU.

A Qualitative Analysis of Low-Income Pregnant and Parenting Caregivers' Experiences With Home Visiting in California During the First 2 Years of the COVID-19 Pandemic.

CONTEXT: In-person home visiting programs that provide evidence-based parenting and child development support improve outcomes for low-income children and families. The COVID-19 pandemic led to a shift from primarily in-person to virtual home visiting services, and little is known about clients' experience of home visiting in this context. OBJECTIVE: To describe the experience of clients in the California Work Opportunity and Responsibility to Kids (CalWORKs) Home Visiting Program (HVP) across California during the first 2 years of the pandemic. DESIGN: Three repeated cross-sectional surveys over a 2-year period. Clients' free-text responses to open-ended questions were analyzed using a directed content analysis approach. SETTING: Forty-one counties in California. PARTICIPANTS: Current CalWORKs HVP clients and those who left the program in the 6 months prior to each survey. MAIN OUTCOME MEASURES: Clients' experience of the CalWORKs HVP. RESULTS: Five main themes emerged: (1) benefits received from the program; (2) life challenges; (3) COVID-19-related or other program changes; (4) client dissatisfaction and suggestions for improvement; and (5) appreciation for the program. Clients valued the practical, financial, parenting, and interpersonal support provided to themselves and their children. Almost three-quarters commented on life challenges experienced during the program. Significant programmatic changes related to COVID-19 pandemic public health safety and organizational constraints impacted clients both positively and negatively. Very few clients experienced overt dissatisfaction with the program. Many clients expressed appreciation for the program, particularly the individualized and relational support offered by a consistent home visitor. CONCLUSIONS: The findings provide insights into the benefits and challenges experienced by clients receiving evidence-based home visiting services. The findings highlight the ongoing life challenges faced by clients who experience poverty, and how those challenges were exacerbated by a global pandemic. The CalWORKs HVP may buffer the substantial personal stresses clients experience related to parenting in the context of poverty and major public health challenges.

Parents' Views on Autopsy, Organ Donation, and Research Donation After Neonatal Death.

Importance: Parents who experience neonatal loss have the option to participate in autopsy, organ donation, and research donation. However, clinicians are uncomfortable discussing autopsy and may not be aware of research and organ donation opportunities. Objective: To capture the perspectives of parents who had experienced neonatal loss about autopsy, organ donation, and research donation. Design, Setting, and Participants: This qualitative study used virtual focus groups with parents who attended a local bereavement support group in the US. Participants were recruited from Helping After Neonatal Death, a support group with a local chapter. Participants self-selected from an email request if they met the following criteria: aged 18 years or older, English speaking, at least 6 months elapsed since neonatal death, and access to a video conference device with internet. Focus groups took place between April and September 2021. The recorded sessions were analyzed using a grounded theory-informed approach by the research team that included parents with experience of neonatal loss. Data were analyzed from December 2021 through December 2022. Results: A total of 14 mothers engaged in the focus group; 9 (75%) were aged 30 to 39 years, and 8 (66%) were White. The mothers were overall well educated. The first main theme grew from the lived experience of neonatal loss, specifically the importance of offering all parents the option to donate, rather than prejudging who would or would not be interested. Parents of neonates who die have few opportunities to parent that child and make loving decisions for them. Participants emphasized that the conversation about autopsy, organ donation, and research donation, albeit difficult, can offer a meaningful parenting experience. A second main theme that emerged related to how organ or tissue donation could provide additional meaning to a child's life. These choices contributed to building a legacy to honor their child's memory, which also helped with grief and coping with their loss. A third theme included recommendations to clinicians and health systems for improving communication, including written information for parents and communication training for health care professionals. Conclusions and Relevance: In this qualitative study, parents who experienced neonatal loss endorsed the importance of offering parents the choice of autopsy, organ donation, or research donation with skillful and empathetic communication. They provided practical recommendations to improve communication and empower families.

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.

Feeding and developmental outcomes after neonatal seizures-A prospective observational study.

Objective: Among neonates with acute symptomatic seizures, we evaluated whether inability to take full feeds at time of hospital discharge from neonatal seizure admission is associated with worse neurodevelopmental outcomes, after adjusting for relevant clinical variables. Methods: This prospective, 9-center study of the Neonatal Seizure Registry (NSR) assessed characteristics of infants with seizures including: evidence of brainstem injury on MRI, mode of feeding upon discharge, and developmental outcomes at 12, 18, and 24 months. Inability to take oral feeds was identified through review of medical records. Brainstem injury was identified through central review of neonatal MRIs. Developmental outcomes were assessed with the Warner Initial Developmental Evaluation of Adaptive and Functional Skills (WIDEA-FS) at 12, 18, and 24 months corrected age. Results: Among 276 infants, inability to achieve full oral feeds was associated with lower total WIDEA-FS scores (160.2±25.5 for full oral feeds vs. 121.8±42.9 for some/no oral feeds at 24 months, p<0.001). At 12 months, a G-tube was required for 23 of the 49 (47%) infants who did not achieve full oral feeds, compared with 2 of the 221 (1%) who took full feeds at discharge (p<0.001). Conclusions: Inability to take full oral feeds upon hospital discharge is an objective clinical sign that can identify infants with acute symptomatic neonatal seizures who are at high risk for impaired development at 24 months.

Overcoming patient safety concerns and integrating early mobility into pediatric intensive care unit nursing practice.

PURPOSE: Early Mobilization (EM) in Pediatric Intensive Care Units (PICU) is safe, feasible and improves outcomes for PICU patients, yet patient safety concerns persist among nurses which limits EM adoption. The purpose of this study was to explore how nurses incorporate EM into practice and balance their concerns for patient safety with the benefits of EM. DESIGN & METHODS: This focused ethnographic study included 15 in-depth interviews with 10 PICU nurses. Data were analyzed using thematic analysis. RESULTS: Two major categories were found which describe the clinical judgement and decision-making of PICU nurses regarding EM. The nurses' concerns for patient safety was the first major category. This included patient-level factors: hemodynamic stability, devices attached, patient's strength, and risk for falls and size. In the second major category, these safety concerns were overcome by applying a multiple step process which resulted in nurses performing EM despite their concerns. That process included: gaining comfort through experience, performing patient safety checks, working with therapists, learning from adverse events, and understanding existing evidence about the benefits of EM. CONCLUSIONS: The overarching theme was nurses' determination to preserve patient safety while ensuring patients could receive the benefits of EM. This theme describes the decisions, behaviors and processes that nurses enact to become more comfortable with EM despite their concerns for patient safety and potential adverse events while performing mobility activities. PRACTICE IMPLICATIONS: Creating opportunities for nurses to participate in EM may increase their willingness to overcome safety concerns and engage in these activities.

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.

A Pilot Study of Family-Integrated Care (FICare) in Critically Ill Preterm and Term Infants in the NICU: FICare Plus.

Family-integrated care (FICare) is associated with improved developmental outcomes and decreased parental mental health risks in stable preterm infants. However, less is known about its application in critically ill infants who are at greater risk for adverse outcomes. The objective of this study was to assess the safety and feasibility of implementation of an augmented FICare program, FICare Plus, in critically ill infants in the first few weeks of life. Resources were specifically developed for staff and parents to support earlier parental engagement in infant care. Infant health outcomes and standardized measures of parental stress, anxiety and parenting self-efficacy were also collected using standardized questionnaires: State -Trait Anxiety Inventory (STAI), Parental Stressor Scale: NICU (PSS: NICU), Perceived Parenting Self-Efficacy Tool and Family Centered Care Survey. The t-test or Wilcoxon rank-sum test were used to compare continuous variables, while the Chi-square or Fisher exact test were used for categorical variables, respectively. In this prospective cohort study, 41 critically ill infants were enrolled: 17 in standard care (SC) and 24 in the FICare Plus group. The tools and procedures developed for FICare Plus successfully supported greater engagement in the care of their infants with no increase in adverse events and no increase in parental stress. Parents in the FICare Plus cohort felt confident to participate in their infant's care. The staff also found this model of care acceptable and well adopted. Preliminary measures of infant efficacy were similar in both groups. Total anxiety scores were high among all parents at enrollment (87 (67-94) vs. 70.5 (66-86); p-value 0.22). However, the scores prior to discharge were lower in FICare Plus group (78 (71-90) vs. 63 (52-74.5); p-value 0.02). This pilot study showed that it is feasible and safe to implement family-integrated care in critically ill infants.

Pursuing Research Justice Through Community-Academic Partnership to Address Racial Disparities in Preterm Birth.

BACKGROUND: The California Preterm Birth Initiative is a community-engaged research effort focused on addressing racial disparities in birth outcomes. OBJECTIVES: To highlight three community-academic partnership strategies and identify partners' lessons learned and recommendations. METHODS: We conducted interviews (n = 38), four focus groups (n = 23), a document review (n = 174), and meeting/event observations (n = 36). We performed content analysis and structural and emerging coding of the data, which involved extracting and sorting information into themes. LESSONS LEARNED: Five themes emerged across the strategies as essential for successful partnerships addressing racial disparities: 1) incorporate a racial equity approach; 2) value community knowledge; 3) ensure accountability to community priorities; 4) build relationships and trust; and 5) address structural barriers to community-academic partnerships. CONCLUSIONS: Community-academic partnerships addressing racial health disparities should confront internal and structural power dynamics early on and support affected communities to lead the efforts, including committing to funding and capacity-building activities to ensure research justice.