Recognizing Communication as a Procedural Skill in Neonatology.

Family‐Centered Developmental Care

Decisions in the Gray Zone: Evidence-Based or Culture-Based?

Parents of infants admitted to a neonatal unit tend to experience emotional stress following admission of their infants in a neonatal unit. The study aimed to explore the experiences of parents whose infants were admitted to a neonatal care unit. We conducted a qualitative study based on strategies of the phenomenological method of inquiry. Participants were recruited at discharge at the neonatal unit. We obtained ethical clearance from the relevant authorities and analysed the data using Braun and Clarke’s thematic framework. We interviewed ten parents (nine mothers and one father). Two themes were identified from the study: 1) sources of parental stress and 2) moderators of parental stress. Parents experienced emotional stress from fears related to the survival chances of their infants, disrupted domestic, economic duties, and challenges meeting the unexpected expenses during hospital admission. Admission to the neonatal unit was perceived to be stressful for parents due to the unfamiliar experience in the neonatal unit, challenges of space, inadequate social amenities, heat from the machines, and restrictive infection and prevention practices. Positive interaction and communication with the healthcare providers, improvement in the infant’s condition, and the ability to adapt and adjust were perceived to moderate parental stress. Parents of infants admitted to a neonatal unit experienced stress for different reasons. Prioritising the psychosocial needs of parents through the development of family-centered care models and support programs is critical in improving the experiences of parents of infants admitted to neonatal units.

Background: The birth of a preterm infant and his/her immediate admittance to the Neonatal Intensive Care Unit (NICU) are sudden, unexpected, stressful and painful events for parents. In the last decade, in response to the increased awareness of the stressful experiences of parents, much attention has been paid to Family-Centered Care (FCC) and the implementation of the Newborn Individualized Developmental Care and Assessment Program (NIDCAP). According to the NIDCAP model, the infant–parents’ dyad is the core of the care provided by the NICU professionals to reduce the stress experienced by parents. So far, the literature does not show a clear correlation between parental experiences and the NICU practices according NIDCAP principles. Aims: To explore how parents of preterm infants experienced the NIDCAP-based care from admission to discharge, in particular, their relationships with NICU professionals and with other parents, and the organization of the couple’s daily activities during this process. Design: Qualitative exploratory study. Methods: Twelve parents of preterm infants born between January 2018 and December 2020 at the NICU of Modena, with a gestational age at birth of less than 30 weeks and/or a birth weight of less than 1250 g, were recruited. Three couples had twins, and the total number of infants was 15. All infants were followed for up to 24 months post-term age (PTA) for neurological outcomes. Each couple was given a semi-structured online interview about their experience during their infant’s hospitalization in the NICU up to discharge. The interview was developed around three time points: birth, hospitalization and discharge. The data analysis was conducted according to the template analysis method. Results: The admission to the NICU was unexpected and extraordinary, and its impact was contained by the skilled staff who were capable of welcoming the parents and making them feel they were involved and active collaborators in the care of their infant. The emotional experience was compared to being in a blender; they were overwhelmed by changing emotions, ranging from terrible fear to extreme joy. The couple’s activities of daily life were reorganized after the infant’s birth and admission to the NICU. Fathers felt unbalanced and alone in taking care of their partners and their children. Conclusions: This is the first study in Italy to explore parental experience in an NICU implementing NIDCAP-based care. The NIDCAP approach in the NICU of Modena helps parents to be involved early, to develop parental skills, and to be prepared for the transition home; and it also facilitates and enhances the relationship between parents and NICU staff.

Hospitalization in the neonatal intensive care unit (NICU) is a profound experience for families. While parental involvement in care is known to improve outcomes, challenges persist in effectively engaging parents and understanding their needs throughout the care continuum, from admission to discharge. This study examined the experiences of parents during their infants' hospitalization in a Level III NICU in Italy to inform nursing-led improvements in family education and engagement. A qualitative exploratory study was conducted as part of an action research project, following the Equator Network Standards for Reporting Qualitative Research (SRQR) guidelines. Italian-speaking parents whose infants were hospitalized for at least 72hours were invited to record their experiences in a structured booklet. Data were analyzed thematically using Braun and Clarke's approach. Five themes emerged: the initial "shock" of entering the NICU environment; the emotional navigation that ranges from happiness to fear; misunderstandings about information on infant care; a strong desire to touch, hold, and care for their baby; and the need to better involve fathers, who often face barriers to presence and participation. The findings highlight the importance of developing nursing interventions that are responsive to the family's needs, including both parents, and are designed to support progressive involvement in care. NICU nurses play a key role in building trust, providing clear and compassionate communication, and preparing families for discharge. Further nursing research should explore and evaluate strategies that reduce stress, enhance understanding, and empower all parents to participate actively in their infants' care.

Decision-making in the neonatal intensive care unit (NICU) is complex. In grey zones (where there are multiple morally acceptable pathways), families and clinicians may disagree about the best plan. While negative moral phenomena (NMP) such as moral distress are well recognised within clinicians, little is known about parental experiences. We sought to understand parental experiences of decision-making, particularly if parents experienced NMP. This was a mixed-methodology phenomenological study, using surveys. Statistical analysis was used for categorical data and thematic analysis for textual data. Four tertiary or quaternary NICUs in Australia and Canada. Parents of infants admitted to NICUs between July 2018 and August 2022 who engaged in decision-making in grey zones. 71 parents (80% mothers) completed the survey. 80% were bereaved.Thematic analysis revealed five themes: (1) decision burdens, (2) internal tensions, (3) actualising beliefs and values through decision-making, (4) inauthentic shared decision-making (SDM) and (5) external factors that shaped decision-making.Parents reported variable experiences of SDM. Despite decisions being described as burdensome, 89% wanted to be very involved in SDM, while 63% felt included. Actualisation of beliefs and values was important. Time pressures, competing interests and environmental factors influenced internal tensions experienced. Despite framing as SDM, some parents reported feeling coerced and experiences consistent with NMP. Some parents do experience significant NMP during SDM in the grey zones of the NICU. Clinician awareness of NMP and their antecedents may enhance communication and the SDM process in this challenging setting.

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Neonatal intensive care unit (NICU) admissions are common and rising. Parents with infants in the NICU face difficult decisions about their infants' care. Few studies have investigated parents' engagement in NICU decisions and its effects on decision regret. We surveyed parents of children who had a NICU stay in the past 3 years. We explored whether sociodemographic characteristics affected preferred decision involvement, shared decision-making with NICU clinicians, or decision regret. Multivariable linear regression analyses examined the relationship between shared decision-making and decision regret. Most parents preferred an active (212/405, 52.3%) or shared (139/405, 34.3%) approach to decision-making. No sociodemographic characteristics related to preferred decision involvement or shared decision-making (p's > 0.05). In multivariable analyses, shared decision-making, education and health literacy related to less decision regret (p's < 0.05). These data suggest the importance of shared decision-making during NICU stays. Studies should identify ways to support parents through NICU decision-making.

BackgroundThe neonatal intensive care unit (NICU) is a complex care environment, with the NICU patient population among the most vulnerable in a hospital setting. Adolescent parents are a unique group within the broader NICU parent population and admission of their infant to the NICU contributes to an already complex situation as adolescent pregnancy and parenting is often associated with a range of psychosocial challenges. How the NICU care context influences care provision for adolescent parents is a significant gap in the NICU parenting and support discourse. Therefore, this study aimed to explore health and social care providers’ perspectives of the NICU care context and how providers perceive the context as influencing the experiences of adolescent parents in the NICU.MethodsThis was a qualitative, interpretive description study design. In-depth interviews were conducted with providers, including nurses and social workers, caring for adolescent parents in the NICU. Data was collected between December 2019 and November 2020. Data were analyzed concurrently with data collection. Constant comparison, analytic memos, and iterative diagramming techniques were used to challenge developing analytic patterns.ResultsProviders (n = 23) described how the unit context influenced care provision as well as experiences for adolescent parents. We learned that having a baby in the NICU was perceived by providers as a traumatic experience for parents – impacting attachment, parenting confidence and competence, and mental health. Environmental factors – such as privacy and time – and perceptions that adolescent parents are treated differently in the NICU were also seen as influencing this overall experience.ConclusionsProviders involved in the care of adolescent parents in the neonatal intensive care unit described the distinctiveness of this group within the broader parent population and how quality of care may be impacted by contextual factors as well as experiences of age-related stigma. Further understanding of NICU experiences from the parents’ perspectives are warranted. Findings highlight opportunities for strengthened interprofessional collaboration and trauma- and violence-informed care strategies within the neonatal intensive care environment to mitigate the potential negative influence of this experience and improve care for adolescent parents.

PurposeTo explore nurses’ perceptions of end-of-life care in neonatal and pediatric intensive care units, focusing on the components, facilitators, and challenges of such care in daily practice.MethodsA qualitative descriptive study was conducted. Data were collected from June to October 2023 through semi-structured individual interviews with 17 nurses from the neonatal and pediatric intensive care units of four tertiary general hospitals in a metropolitan area of South Korea, and were analyzed using thematic analysis techniques.ResultsWe identified three themes and nine subthemes: (1) supporting families’ emotional and relational closure, (2) perceiving relational and systemic support as enabling end-of-life care, and (3) feeling constrained by systemic and practical challenges. Participants perceived fostering an emotional connection with the child, ensuring opportunities for meaningful farewell, and supporting emotional acceptance of death as ways to support families’ emotional and relational closure with their child. Although relational and systemic support, such as collaborative teamwork, clear communication, shared planning, and structured tools, enabled compassionate care, participants also felt unprepared, burdened by heavy workloads, and hindered by environmental barriers.ConclusionThe findings highlight that delivering quality end-of-life care in neonatal and pediatric intensive care units requires supporting families’ emotional needs, strengthening relational and systemic support, and addressing practical challenges. Further research is needed to develop and test practical strategies (e.g., specialized education in compassionate communication, standardized protocols, and supportive care environments) that can improve the quality of end-of-life care for neonatal and pediatric patients and their families.

To determine the feasibility and utility of a thematic analysis approach to synthesising qualitative evidence about parental experiences in the neonatal intensive care unit. Admission of infants to the neonatal intensive care unit is usually an unexpected event for parents who can cause them to experience psychosocial difficulties. A qualitative systematic review is the best method for exploring these parents' experiences regarding this type of admission. Systematic review. Qualitative studies in peer-reviewed journals aimed at understanding parental experiences regarding infant neonatal intensive care unit admission were identified in six electronic databases. Three reviewers selected relevant articles and assessed the quality of the methodological studies using the Critical Appraisal Skills Programme. Athematic analysis approach was used to identify the most common themes in thestudies describing parental experiences in the neonatal intensive care unit. A total of eighty articles were identified; nine studies were included in this review. Four studies used semistructured interviews, three used interviews, one used self-reporting and one used both focus group and interview methodologies. Common themes across parents' experiences were the stress of hospitalisation, alteration in parenting roles and the impact of infant hospitalisation on psychological health. Having an infant hospitalised in the neonatal intensive care unit is a stressful experience for parents. This experience is the result of exposure to different stressors related to the infant's condition, an alteration in parenting roles or the neonatal intensive care unit environment and staffing. These parents suffered negative psychological effects, experienced an interrupted development of a healthy parent-infant attachment and/or felt parental role alteration. The study's findings are crucial for neonatal intensive care unit nurses to develop intervention strategies and programmes that help parents to decrease the stress of their experience and to support them in facing this stressful situation.

Characterizing Parent-Clinician Discussions About Critically Ill Infants: Empirical Observation of Real-Time Conversations (S713)

ObjectivesTo create an innovative App which aims to educate children regarding their sibling’s Neonatal Unit (NNU) admission, whilst offering emotional support and psychological strategies to aid coping.MethodsNeonatal units across the...

Our objective was to evaluate the preferences and experiences of bereaved parents around advance care planning (ACP) in the neonatal intensive care unit (NICU). Single-center cross-sectional survey of bereaved parents who experienced the death of a child in the Boston Children's Hospital NICU between 2010 and 2021 was carried out. Chi-square, Fisher's exact, Fisher Freeman Halton, and Wilcoxin rank sum tests were used to evaluate differences between parents who did and did not receive ACP. Out of eligible parents, 40 out of 146 (27%) responded to our survey. Most parents (31 out of 33, 94%) rated ACP as being very important and 27 out of 33 (82%) reported having ACP discussions during their child's admission. Parents preferred initial ACP discussions to occur early in their child's illness trajectory with members of the primary NICU team, with most parents' experiences aligning with these preferences. Parents value ACP discussions suggesting a further role for ACP in the NICU. · NICU parents value and participate in advance care planning discussions. · Parents prefer advance care planning with members of the primary NICU, specialty, and palliative care teams. · Parents prefer advance care planning early in their child's illness trajectory.

Perinatal Counseling at the Margin of Gestational Viability: Where We’ve Been, Where We’re Going, and How to Navigate a Path Forward