To explore parents' needs and perceived gaps concerning communication with healthcare professionals during their preterm infants' admission to the neonatal (intensive) care unit (NICU) after birth. Semi-structured, retrospective interviews with 20 parents of preterm infants (March 2020), admitted to a Dutch NICU (level 2-4) minimally one week, one to five years prior. The interview guide was developed using Epstein and Street's Framework for Patient-Centered Communication. Online interviews were audio-taped and transcribed verbatim. Deductive and inductive thematic analysis was performed by two independent coders. Communication needs and gaps emerged across four main functions of NICU communication: Building/maintaining relationships, exchanging information, (sharing) decision-making, and enabling parent self-management. Communication gaps included: lack of supportive physician communication, disregard of parents' views and agreements, missing communication about decisions, and the absence of written (discharge) information. This study improves our understanding and conceptualization of adequate NICU communication by revealing persisting gaps in parent-provider interaction. Also, this study provides a steppingstone for further integration of parents as equal partners in neonatal care and communication. The results are relevant to practitioners in the field of neonatal and pediatric care, providing suggestions for tangible improvements in NICU care in the Netherlands and beyond.

To assess the main functions of parent-provider communication in the neonatal (intensive) care unit (NICU) and determine what adequate communication entails according to both parents and health professionals. A systematic review and meta-synthesis of qualitative research. PubMed, Ebsco/PsycINFO, Wiley/Cochrane Library, Ebsco/CINAHL, Clarivate Analytics/Web of Science Core Collection, and Elsevier/Scopus were searched in October-November 2019 for records on interpersonal communication between parents and providers in neonatal care. Title/abstract screening and full-text analysis were conducted by multiple, independent coders. Data from included articles were analyzed using deductive and inductive thematic analysis. 43 records were included. Thematic analysis of data resulted in the development of the NICU Communication Framework, including four functions of communication (1. building/maintaining relationships, 2. exchanging information, 3. (sharing) decision-making, 4. enabling parent self-management) and five factors that contribute to adequate communication across these functions (topic, aims, location, route, design) and, thereby, to tailored parent-provider communication. The NICU Communication Framework fits with the goals of Family Integrated Care to encourage parent participation in infants' care. This framework forms a first step towards the conceptualization of (adequate) communication in NICU settings. Findings can be used to improve NICU communication in practice, in particular through the mnemonic TAILORED.

Aim: To review the evidence on safety of maintaining family integrated care practices and the effects of restricting parental participation in neonatal care during the SARS‐CoV‐2 pandemic.Methods: MEDLINE, EMBASE, PsycINFO and CINAHL databases were searched from inception to the 14th of October 2020. Records were included if they reported scientific, empirical research (qualitative, quantitative or mixed methods) on the effects of restricting or promoting family integrated care practices for parents of hospitalised neonates during the SARS‐CoV‐2 pandemic. Two authors independently screened abstracts, appraised study quality and extracted study and outcome data.Results: We retrieved 803 publications and assessed 75 full‐text articles. Seven studies were included, reporting data on 854 healthcare professionals, 442 parents, 364 neonates and 26 other family members, within 286 neonatal units globally. The pandemic response resulted in significant changes in neonatal unit policies and restricting parents' access and participation in neonatal care. Breastfeeding, parental bonding, participation in caregiving, parental mental health and staff stress were negatively impacted.Conclusion: This review highlights that SARS‐CoV‐2 pandemic‐related hospital restrictions had adverse effects on care delivery and outcomes for neonates, families and staff. Recommendations for restoring essential family integrated care practices are discussed.

Importance: Parent‐infant closeness and active parent participation in neonatal care are important for parent and infant health.Objective: To give an overview of current neonatal settings and gain an in‐depth understanding of facilitators and barriers to parent‐infant closeness, zero‐separation, in 19 countries.Methods: Neonatal intensive care unit (NICU) professionals, representing 45 NICUs from a range of geographic regions in Europe and Canada, were purposefully selected and interviewed June–December 2018. Thematic analysis was conducted to identify, analyze and report patterns (themes) for parent‐infant closeness across the entire series of interviews.Results: Parent‐infant separation during infant and/or maternity care is very common (42/45 units, 93%), despite the implementation of family integrated care (FICare) practices, including parent participation in medical rounds (17/45, 38%), structured education sessions for parents (16/45, 36%) and structured training for healthcare professionals (22/45, 49%). NICU professionals encountered four main themes with facilitators and barriers for parent‐infant closeness on and between the hospital, unit, staff, and family level: Culture (jointly held characteristics, values, thinking and behaviors about parental presence and participation in the unit), Collaboration (the act of working together between and within different levels), Capacities (resources and policies), and Coaching (education to acquire and transfer knowledge and skills).Interpretation: Implementing parent‐infant closeness in the NICU is still challenging for healthcare professionals. Further optimization in neonatal care towards zero‐separation and parent‐infant closeness can be achieved by enforcing the ‘four Cs for Closeness’: Culture, Collaboration, Capacities, and Coaching.

Background: Active parent participation in neonatal care and collaboration between parents and professionals during infant hospitalization in the neonatal intensive care unit (NICU) is beneficial for infants and their parents. A tool is needed to support parents and to study the effects and implementation of parent-partnered models of neonatal care. Methods: We developed and psychometrically evaluated a tool measuring active parent participation and collaboration in neonatal care within six domains: Daily Care, Medical Care, Acquiring Information, Parent Advocacy, Time Spent with Infant and Closeness and Comforting the Infant. Items were generated in focus group discussions and in-depth interviews with professionals and parents. The tool was completed at NICU-discharge by 306 parents (174 mothers and 132 fathers) of preterm infants. Subsequently, we studied structural validity with confirmatory factor analysis (CFA), construct validity, using the Average Variance Extracted and Heterotrait-Monotrait ratio of correlations, and hypothesis testing with correlations and univariate linear regression. For internal consistency we calculated composite reliability (CR). We performed multiple imputations by chained equations for missing data. Results: A 31 item tool for parent participation and collaboration in neonatal care was developed. CFA revealed high factor loadings of items within each domain. Internal consistency was 0.558 to 0.938. Convergent validity and discriminant validity were strong. Higher scores correlated with less parent depressive symptoms (r = -0.141, 95%CI -0.240; -0.029, p = 0.0141), less impaired parent-infant bonding (r = -0.196, 95%CI -0.302; -0.056, p<0.0001), higher parent self-efficacy (r = 0.228, 95%CI 0.117; 0.332, p<0.0001), and higher parent satisfaction (r = 0.197, 95%CI 0.090; 0.308, p = 0.001). Parents in a family integrated care model had higher scores than in standard care (beta 6.020, 95%CI 4.144; 7.895, p<0.0001) and mothers scored higher than fathers (beta 2.103,95%CI 0.084; 4.121, p = 0.041). Conclusion: The CO-PARTNER tool explicitly measures parents’ participation and collaboration with professionals in neonatal care incorporating their unique roles in care provision, leadership, and connection to their infant. The tool consists of 31 items within six domains with good face, content, construct and structural validity.

Background: Recent studies reported an association between prenatal propylthiouracil exposure and birth defects, including abnormal arrangement across the left–right body axis, suggesting an association with heterotaxy syndrome.Methods: This case–control and case‐finding study used data from 1981 to 2013 from the EUROCAT birth defect registry in the Northern Netherlands. First, we explored prenatal exposures in heterotaxy syndrome (cases) and Down syndrome (controls). Second, we describe the specific birth defects in offspring of mothers using propylthiouracil (PTU) prenatally.RESULTS: A total of 66 cases with heterotaxy syndrome (incidence 12.1 per 100,000 pregnancies) and 783 controls with Down syndrome (143.3 per 100,000 pregnancies) were studied. No differences in intoxication use during pregnancy were found between cases and controls, including smoking (28.0% vs. 22.7%; p = 0.40), alcohol (14.0% vs. 26.9%; p = 0.052), and recreational drugs (0 vs. 0.3%; p = 1.00). We found an association between heterotaxy syndrome and prenatal drug exposure to follitropin‐alfa (5.6% vs. 1.1%; p = 0.04), and drugs used in nicotine dependence (3.7% vs. 0.2%; p = 0.02). Five mothers used PTU during pregnancy and gave birth to a child with trisomy 18, renal abnormalities, or hypospadias and cardiac defects.Conclusion: This study identified follitropin‐alfa and drugs used in nicotine dependence as possible teratogens of heterotaxy syndrome. Our data suggest the possibility that there is an increased risk of birth defects (including renal, urological, and cardiac abnormalities) in children born among mothers taking PTU prenatally, but not for heterotaxy syndrome. Birth Defects Research (Part A) 106:573–579, 2016.