Neonatal Intensive Care Unit Family Research Articles

Family Perception of OpenNotes in the Neonatal Intensive Care Unit.

OpenNotes, or sharing of medical notes via a patient portal, has been studied extensively in the adult population, but less in pediatric populations, and even more rarely in inpatient pediatric or intensive care settings. This study aimed to understand families' interaction with and perception of inpatient hospital notes shared via patient portal in a community Neonatal Intensive Care Unit (NICU). At the end of the NICU discharge education, completed in the patient portal before discharge, families were offered an anonymous survey on OpenNotes. Out of 446 NICU patients from March 16, 2022 to March 16, 2023, there were 59 respondents (13%). Race was primarily Asian (48%), and English was the predominant language (93%). Most families indicated that the notes were "very or somewhat easy to understand" (93%). Seventy-three percent of respondents felt much better about the doctor(s) after reading the notes, and 53% contacted the physicians about something in the notes. Six (16%) felt that OpenNotes were more confusing than helpful. To the authors' knowledge, this is the first study on NICU families' perceptions of OpenNotes, which indicated positive interactions with the doctors' daily progress notes and gave important suggestions for improvement.

Communication in the neonatal ICU for Spanish speaking parents: a qualitative interview study

BackgroundIn the neonatal intensive care unit (NICU), health outcome disparities exist between patients with limited English proficiency (LEP) and those proficient in English. Our objective was to investigate the communication experience of parents with LEP in the NICU to learn how to mitigate such health disparities.MethodsA certified bilingual provider conducted seventeen interviews of parents who identified Spanish as their preferred language and whose newborn was admitted to the NICU for ≥ 1 week. Interviews were conducted August 2020 – December 2021. Conventional content analysis utilizing an inductive open coding process was performed.ResultsThe experiences of Spanish speaking parents with LEP in the NICU can be characterized by 3 main themes: 1) Information accessibility 2) Perspectives about interpreters and 3) Emotional consequences.ConclusionsOur findings can inform neonatal quality initiatives to facilitate timely and good communication for NICU families with LEP.

Family Resilience as an Emerging Concept in Neonatology: Evidence From a Metasummary Review.

Family resilience can be observed through specific resilience-promoting processes, namely, shared belief systems, communication, and organizational processes, but the concept remains mostly unstudied in neonatology. This metasummary aims to evaluate the frequency of family resilience processes in qualitative scientific literature to illustrate how family resilience is exhibited in the neonatal intensive care unit (NICU) setting. A search among 4 databases yielded 7029 results, which were reviewed for inclusion. Following Sandelowski and Barroso's qualitative metasummary method, findings from each study were independently coded and frequency effect size was calculated. Forty-six primary qualitative studies published between 2016 and 2022 conducted with parents of preterm infants who discussed their NICU hospitalization experience were included in this metasummary. All 9 of Walsh's family resilience processes were identified in the literature, and their frequency effect size ranged from 4% to 91%. Four additional themes emerged pertaining to specific family resilience behaviors exhibited by NICU families. This analysis sheds new light on the most recent qualitative evidence of parents' experiences in the NICU by analyzing it through the lens of family resilience and posits family resilience as a promising concept in relation to the predominance of the family-centered care philosophy in neonatal units.

A biopsychosocial model of NICU family adjustment and child development.

Although infants in Neonatal Intensive Care Units (NICU) are at risk for developmental impairments and parents are at risk for emotional distress, factors that explain outcomes remain unknown. Here, we developed the first biopsychosocial model to explain family adjustment after NICU discharge. Participants included 101 families at The Children's Hospital of Philadelphia Neonatal Follow-Up Program who had been discharged 1.5-2.5 years prior. We gathered data using validated assessments, standardized assessments, and electronic medical records. Our structural equation model, informed by the Double ABC-X Model, captured the dynamic relationships among infant, parent, couple, and family factors. Infant medical severity, posttraumatic stress, couple functioning, and family resources (e.g., time, money) were key for family adjustment and child development. Interventions that target parental posttraumatic stress, couple dynamics, parental perception of time for themselves, and access to financial support could be key for improving NICU family outcomes.

Costs of Neonatal Medical Complexity: Impact on New Parent Stress and Decision-Making.

Parents of children with medical complexity experience substantial financial burdens. It is unclear how neonatal intensive care unit (NICU) clinicians prepare new parents of medically complex infants for this reality. This study explored new parent awareness of health care costs, desire to discuss costs with clinicians, and impact of costs on parents' medical decision-making. The study design comprised semistructured interviews and surveys of parents of infants with medical complexity currently or previously in a NICU. Conventional content analysis was performed on interview transcripts, and descriptive analyses were applied to surveys. Thematic saturation was reached with 27 families (15 NICU families and 12 post-NICU families) of diverse race/ethnicity/education/household income. Most were worried about their infants' current/future medical expenses and approximately half wanted to discuss finances with clinicians, only one parent had. While finances were not part of most parent's NICU decision-making, some later regretted this and wished cost had been incorporated into treatment choices. The family desire to discuss costs did not vary by family financial status. Parents described their infant's health care costs as: "We are drowning"; and "We'll never pay it off." Most parents were worried about current and future medical expenses related to their infant's evolving medical complexity. Many wanted to discuss costs with clinicians; almost none had. NICU clinicians should prepare families for the future financial realities of pediatric medical complexity. · Many families want to discuss costs with NICU clinicians.. · Some families want costs to be a part of medical decisions.. · Few families currently discuss costs with NICU providers..

Evaluation of a course for neonatal fellows on providing psychosocial support to NICU families.

Families in the Neonatal Intensive Care Unit (NICU) experience significant psychological distress. Fellowship training requires education on mental health issues. No standardized program exists. We evaluated the impact of an online course, combining research with family perspectives, on neonatology fellow knowledge and self-efficacy when emotionally supporting NICU families. Fellows from 20 programs completed a course covering: (1) Parent Mental Health, (2) Infant Mental Health, (3) Communication, and (4) Comprehensive Mental Health (e.g., discharge, bereavement) with pre- and post-course knowledge and self-efficacy assessments. Fellows (n=91) completed the course and assessments. Pre-course knowledge was similar by year of training (1st: 66.9%; 2nd: 67.2%; 3rd: 67.4%). Mean knowledge and self-efficacy improved between pre- and post-course assessments regardless of training year or prior education for knowledge (d=1.2) (67.1% vs. 79.4%) and for self-efficacy (d=1.2) (4.7 vs 5.2 on 6-point Likert scale). Fellows who gained more knowledge had higher self-efficacy scores at post-test (r = .37). Current neonatal fellowship training under-educates on mental health. An online course improved fellow knowledge and self-efficacy. Our course may be an exemplar for others creating similar curricula. An online course enriched by patient perspectives is an effective method of disseminating education around mental health.

Providing "Compassionate Care" in the Neonatal Intensive Care Unit Through Infant and Family Needs-Based Care.

Provision of compassionate care to infants and their families in the neonatal intensive care unit (NICU) is a key component of competent critical care. Although recognized as an essential aspect of NICU care, compassionate care for infants and families in a NICU setting has been underexplored. This study defined and described compassionate care according to NICU staff. Voice-recorded, face-to-face individual interviews occurred with NICU nurses (n = 45), NICU nurse practitioners (n = 15), and neonatologists (n = 9) from two NICUs in the midwestern United States. Semantic content analysis was used. Consolidated criteria for Reporting Qualitative research guidelines were followed. Three dynamic and interactive qualitative themes emerged: excellent standard of intensive care, commitment, and engaged family communication. A conceptual framework entitled patient and family needs-based care was developed from the qualitative interviews. The framework developed from this study supports the therapeutic journey of NICU infants and families by integrating a focus on compassionate personalized care within the context of keen clinical and communication skillsets that staff have gained throughout their NICU careers. · While clinical competence is emphasized as a practice standard, compassion remains a core care value.. · A working definition of compassionate care and the description of its defining pillars has been underexplored.. · This study describes the perspectives of NICU staff on the actionable components of compassionate care for ill infant and their families..

Exploring the parents needs from the viewpoints of parents and nurses in a level III NICU in Kerman Iran: A Comparative Descriptive Study

BackgroundHospitalization of newborns in a neonatal intensive care unit (NICU) adversely affects parental health, their transition to successful parenting, and their relationship with their infant. By better meeting the needs of parents, nurses can provide more effective help to parents who are facing many challenges during their NICU journey. AimThis study aimed to explore parental needs from the viewpoints of parents and nurses in a Level III NICU in Kerman Iran. MethodsThis comparative-descriptive study included 65 nurses,47 mothers, and 27 fathers who were selected for participation through the convenience sampling method. A 3-part questionnaire was utilized that was comprised of demographic data; the NICU Family Needs Inventory, and the Needs Met Inventory (NMI). Data were analyzed by SPSS No.24, using ANOVA and multiple linear regression tests to compare the 3 groups. The answers to an open-ended question were analyzed and categorized based on their frequencies. ResultsMothers paid more attention to all needs (ρ = 0.000*). Fathers realized that their needs were met less than mothers and nurses (ρ = 0.11). Participants had different priorities regarding the importance of each need, and meeting each of the needs. While the most important needs of parents were the welfare amenities, nurses mentioned increasing the parents’ knowledge of NICU or improving nursing knowledge as important. ConclusionParents and nurses had different views about the actual needs of parents; therefore, nurses should not prioritize their personal views over those of the parents. This may waste available and limited resources, increase parental stress, and postpone their adaptation with their newborn.

Sociodemographic risk factors, parental stress and social support in the neonatal intensive care unit

ObjectiveInvestigate relationships among neonatal intensive care unit (NICU) parent demographics, reported stress and social support.DesignCross-sectional observation.SettingTertiary referral NICU in Mid-Atlantic USA.PatientsParents (n=300) in the Giving Parents Support trial at enrolment.MeasuresPsychometric...

Needs Assessment of Iranian Families with Neonates Hospitalized in the Neonatal Intensive Care Unit

Background: The neonate's birth and subsequent hospitalization cause families to experience various needs. Identifying the family's needs can lead to the provision of qualitative services and the implementation of family-centered development care (FCDC) by nurses. Objectives: This study aimed to assess the needs of Iranian families with neonates in Neonatal Intensive Care Units (NICUs). Methods: This cross-sectional study was conducted in northern Iran in 2018 - 2019 on 360 parents of neonates admitted by convenience sampling method to the neonatal intensive care unit (NICU). Data were collected by demographic questionnaire of parents and neonates and NICU Family Needs Inventory (NFNI) of Ward with five dimensions of proximity, assurance, information, comfort, and support. The data were analyzed using Pearson and Spearman correlation coefficients and a t-test by SPSS23 software. Results: The most important dimensions of family needs were proximity to the infant (93.59%), information (90.53%), assurance (89.18%), comfort (86.70%), and support (80.78%). A comparison of the dimensions of the needs of primiparous, multiparous, and term preterm parents indicated that assurance for multiparous parents (P < 0.001) and comfort for parents with term infants (P < 0.02) were significantly higher than the other dimensions. Conclusions: The study found that proximity to infants is the most important dimension of family needs. Therefore, the relevant authorities should take effective measures to ensure parent-infant proximity.

Bereavement Support for Siblings after Neonatal Loss: an Online Survey of U.S. Training Centers.

The aim of this study was to examine bereavement support for siblings of patients who die in the neonatal intensive care unit (NICU) given the adverse effects of unprocessed grief and the paucity of information on children whose newborn siblings die STUDY DESIGN: This was an anonymous online original survey assessing pre-COVID-19 pandemic bereavement services for NICU families, clinicians' attitudes toward support interventions, challenges, and center characteristics. In spring 2020, nurse managers at 81 U.S. centers with neonatology and maternal-fetal medicine fellowship programs were asked to identify the individual most knowledgeable in their NICU's bereavement support services; these individuals were invited by email to complete an original online survey. Chi testing and odds ratios (ORs) compared responses from centers reporting involvement of palliative care teams (PCT) in NICU sibling bereavement versus no PCT. Fifty-six percent (45 of 80) of invitees responded. Most (77%) NICUs permitted perimortem sibling visitation. Challenges included sparse community resources and limited direct sibling contact. Sixty-nine percent (n = 31) of centers were grouped as PCT. PCT respondents reported eightfold higher chances of providing direct education to the sibling (OR, 7.7; 95% confidence interval, 1.7-34; p = 0.01). Views on appropriateness of sharing educational information with extended family, babysitters, and teachers did not differ. While notifying pediatricians of families experiencing NICU death was more common in PCT (p = 0.02), most respondents reported having "no individual responsible for such communications" (52% PCT vs. 100%, p = 0.001). Despite limited direct contact with siblings of NICU patients who die, efforts are made to involve them in bereavement activities. Opportunities to support these children were identified. Where available, palliative care teams can help provide bereaved siblings with direct education. We recommend formalizing communication mechanisms to ensure that if a NICU patient dies and has surviving siblings, the outpatient physicians caring for these siblings are informed. · Palliative care enhanced sibling support.. · Resource and visitation limits hinder support.. · Teams sporadically briefed siblings' physicians..

Recognizing Our Biases, Understanding the Evidence, and Responding Equitably: Application of the Socioecological Model to Reduce Racial Disparities in the NICU.

Implicit bias permeates beliefs and actions both personally and professionally and results in negative health outcomes for people of color-even in the neonatal intensive care unit (NICU). NICU clinicians may naïvely and incorrectly assume that NICU families receive unbiased care. Existing evidence establishing associations between sex, race, and neonatal outcomes may perpetuate the tendency to deny racial bias in NICU practice. Using the socioecological model as a framework, this article outlines evidence for racial health disparities in the NICU on multiple levels-societal, community, institutional, interpersonal, and individual. Using current evidence and recommendations from the National Association of Neonatal Nurses Position Statement on "Racial Bias in the NICU," appropriate interventions and equitable responses of the NICU clinician are explored. Based on current evidence, clinicians should reject the notion that the social construct of race is the root cause for certain neonatal morbidities. Instead, clinicians should focus on the confluence of medical and social factors contributing to each individual infant's progress. This critical distinction is not only important for clinicians employing life-saving interventions, but also for those who provide routine care, developmental care, and family education-as these biases can and do shape clinical interactions. Healthcare practitioners have an ethical and moral responsibility to maintain up-to-date knowledge of new evidence that impacts our clinical practice. The evidence demonstrates the importance of recognizing the enduring role of racism in the health and well-being of people of color and the need to adjust care accordingly.

Caring for our caretakers: building resiliency in NICU parents and staff.

The neonatal intensive care unit (NICU) is a high-acuity, stressful unit for both parents and staff. Up to 50% of mothers and partners experience emotional distress (i.e., depression, anxiety, or posttraumatic stress) during NICU hospitalization and 30–60% continue to experience distress after discharge. Similarly, up to 50% of NICU staff report burnout and emotional distress. Although healthcare providers have developed interdisciplinary guidelines to enhance psychosocial resources for parents and staff, standardized psychosocial services are lacking. The purpose of this short communication is to describe: (1) the need for psychosocial interventions for NICU parents and staff; (2) existent psychosocial programs and their gaps and limitations; and (3) future directions for psychosocial care in NICU settings. We reviewed the current literature and propose a new conceptual model to inform psychosocial interventions for the NICU. We argue that brief, evidence-based, resiliency, and relationship-based programs are needed to enhance parent and staff outcomes and, ultimately, child development and the NICU unit culture.Conclusion: Given the lack of standardized psychosocial care, new interventions for NICU families and staff are needed more than ever. Resiliency, relationship-based interventions that leverage multidisciplinary support may be an innovative way to enhance NICU outcomes and care. What is Known:• 40-50% of parents in the NICU report elevated emotional distress and 30-50% of staff report burnout.• Psychosocial interventions for parents and staff are needed, yet lacking.What is New:• Interventions that focus on resiliency and relationships may improve the culture of the NICU.• New multidisciplinary collaborations and approaches are needed to improve implementation.

Lower Maternal Chronic Physiological Stress and Better Child Behavior at 18 Months: Follow-Up of a Cluster Randomized Trial of Neonatal Intensive Care Unit Family Integrated Care

To assess whether Family Integrated Care (FICare) in the neonatal intensive care unit improves maternal chronic physiological stress and child behavior at 18months of corrected age for infants born preterm. Follow-up of a multicenter, prospective cluster-randomized controlled trial comparing FICare and standard care of children born at <33weeks of gestation and parents, stratified by tertiary neonatal intensive care units, across Canada. Primary outcomes at 18months of corrected age were maternal stress hormones (cortisol, ie, hair cumulative cortisol [HCC], dehydroepiandrosterone [DHEA]) assayed from hair samples. Secondary outcomes included maternal reports of parenting stress, child behaviors (Internalizing, Externalizing, Dysregulation), and observer-rated caregiving behaviors. Outcomes were analyzed using multilevel modeling. We included 126 mother-child dyads from 12 sites (6 FICare sites, n=83; 6 standard care sites, n=43). FICare intervention significantly lowered maternal physiological stress as indicated by HCC (B=-0.22 [-0.41, -0.04]) and cortisol/DHEA ratio (B=-0.25 [-0.48, -0.02]), but not DHEA (B=0.01 [-0.11, 0.14]). Enrollment in FICare led to lower child Internalizing (B=-0.93 [-2.33, 0.02]) and Externalizing behavior T scores (B=-0.91 [-2.25, -0.01]) via improvements to maternal HCC (mediation). FICare buffered the negative effects of high maternal HCC on child Dysregulation T scores (B=-11.40 [-23.01, 0.21]; moderation). For mothers reporting high parenting stress at 18months, FICare was related to lower Dysregulation T scores via maternal HCC; moderated mediation=-0.17 (-0.41, -0.01). FICare has long-term beneficial effects for mother and child, attenuating maternal chronic physiological stress, and improving child behavior in toddlerhood. NCT01852695.

Using occupant interaction with advanced lighting systems to understand opportunities for energy optimization: Control data from a hospital NICU

Lighting system control data from five patient rooms in a neonatal intensive care unit (NICU) over a 25-week monitoring period were analyzed to better understand how the NICU staff and families interacted with an automatic tunable lighting system (variable spectrum and intensity) with manual override options. The data were analyzed to determine the amount of time spent in available lighting modes, estimate energy consumption, and to observe any patterns in how the lighting system was being used by occupants. Further analysis revealed opportunities for optimizing the system for occupant needs and energy savings. The patient room occupants were clearly engaged in using the lighting system throughout the 24-hour day to meet needs and preferences. Giving occupants control over the lighting system did not result in a considerable increase in energy use. Implementing a time-out would minimize the extended periods of time when the lights were left on without need at the highest brightness level, further decreasing energy use. This analysis reveals the potential of lighting control data to contribute to energy savings.

NeoCHIRP: A model for intestinal rehabilitation in the neonatal intensive care unit.

Multidisciplinary intestinal rehabilitation (IR) teams have transformed care in pediatric intestinal failure (IF).1 Although most children with IF are identified in the neonatal intensive care unit (NICU), IR teams may not be involved at this stage. We describe our collaborative model, blending NICU and IR expertise to optimize care. Over 6 years, the NeoCHIRP (Neonatal Children's IR Program) team followed 164 babies for weekly visits (median, 8; range, 1-27). Bedside rounds included CHIRP team physician and surgeons, neonatologist champion, attending neonatologist and fellow, NICU dietitian, bedside nurse, and family. Medical and nutrition status, nutrition history, and laboratory data were discussed, and a nutrition plan to support IR, considering the child's other medical needs, was created to guide the next week's management. Typical issues addressed included parenteral nutrition (PN) composition, enteral nutrition plan, oral feeding, management of small-intestinal bacterial overgrowth and sodium status, and cholestasis. A total of 164 babies were followed by the NeoCHIRP team. Of 153 survivors, IF resolved by discharge in 89% (136 of 153). Seventeen of 153 babies (11%) went on to require home PN and were transferred from NICU directly to the CHIRP team. By discharge, 99% of babies were orally fed (69/136, 50% fully, 67/136, 49% partially), and cholestasis improved or resolved in 80/105 (76%). Eleven babies (7%) died; four deaths were unrelated to IF, but in seven babies, IF was at least a contributing factor. In this high-risk cohort, most babies achieved good outcomes, and those who required longer-term IR transitioned smoothly to the CHIRP team.

Beliefs and needs of fathers of newborns hospitalised in a neonatal unit: A descriptive correlational study

BackgroundTransition to parenthood is a wonderful yet stressful period especially when it involves the newborn's hospitalisation. To support and facilitate this transition, it is essential to understand parental beliefs and needs. The father's perspective remains an understudied yet fundamental question. ObjectivesThe objective of the study was to measure beliefs and needs of fathers of newborns hospitalised in a neonatal intensive care unit (NICU) and their correlations with sociodemographic variables. MethodsFathers with a newborn hospitalised for 4–15 days in a level III NICU in Western Switzerland completed the NICU Parental Beliefs Scale and the short form of the NICU Family Needs Inventory. For each item of the NICU Family Needs Inventory, fathers also answered with regard to their satisfaction level. Additional needs were collected with an added open-ended question. Simple linear regressions were used to correlate beliefs, needs, and the sociodemographic data. ResultsSeventy fathers were included. The average score for paternal beliefs was 68.44 (standard deviation = 10.29), indicating a good perception of their role. The majority (77%) considered all needs as very important or important, and 70% were very satisfied or satisfied. Fathers described communication as a very important, but unmet, need. Fathers' beliefs were higher in those who were not first-time fathers (71.88 ± 8.27 vs 66.06 ± 10.97, p = 0.028), who had a paternity leave (72.68 ± 10.19 vs 66.05 ± 9.68, p = 0.014), and who were of foreign nationality (71.86 ± 9.39 vs 63.85 ± 9.80, p = 0.002). ConclusionsFathers with a newborn hospitalised in the neonatal unit had good paternal beliefs. Most of the listed needs were perceived as very important and had a good level of satisfaction. Significant differences between Swiss fathers and fathers of foreign nationality were measured. Reasons of these differences should be explored in a forthcoming study.

How to hold an effective NICU family meeting: capturing parent perspectives to build a more robust framework.

ObjectiveTo record the content and parental perceptions of family meetings in a Neonatal Intensive Care Unit (NICU) to improve existing frameworks for facilitating these meetings.Study designA prospective, mixed-methods study. NICU family meetings were audio-recorded, transcribed, and analyzed by an iteratively derived coding framework until thematic saturation. We used descriptive statistics of parental post-meeting assessments.ResultsQualitative analysis of 21 meetings identified both Communication Facilitators and Barriers. Facilitators included use of visual-aids and participation of social workers to clarify information for parents. Barriers included staff rarely eliciting parental comprehension (3 meetings) or concerns (5) before providing new information, resulting in 39% of parents reporting they didn’t ask questions they wanted to ask. In 33% of meetings an important participant was absent.ConclusionsThis novel qualitative and quantitative dataset of NICU family meetings highlights areas for improving communication. Attention to these components may improve parental perceptions of family meetings.

Kangaroo father care: A pilot feasibility study of physiologic, biologic, and psychosocial measures to capture the effects of father-infant and mother-infant skin-to-skin contact in the Neonatal Intensive Care Unit.

Robust literature supports the positive effects of kangaroo mother care (KMC) on infant physiologic stability and parent-infant bonding in the Neonatal Intensive Care Unit (NICU). Comparatively little is known about kangaroo father care (KFC) in the NICU, and KFC implementation has been limited. Our pilot feasibility study objective was to examine KFC effects on premature infants and fathers as compared to KMC. Parents of preterm NICU infants independently completed a 90-min Kangaroo Care (KC) session on consecutive days. Infant heart rate variability (HRV) and apnea/periodicity measures were compared (pre-KC to KC; KFC to KMC). Additionally, we assessed the feasibility of administering three psychosocial questionnaires to fathers and mothers in the NICU and after discharge. Ten preterm infants completed 20 KC sessions (334/7 -374/7 weeks post-menstrual age). Results demonstrated similar infant physiologic responses between KMC and KFC, including significant differences in measures of HRV (p<.05) between KC and non-KC periods. Eighty-eight percentage of questionnaires administered were completed, supporting the utilization of these instruments in future research of this population. If confirmed, these preliminary results identify an opportunity to objectively assess KFC effects, supporting the development of empirically based KFC programs benefitting NICU families.

Isolated and On Guard: Preparing Neonatal Intensive Care Unit Families for Life with Hydrocephalus.

This study was aimed to characterize the parent experience of caring for a child with posthemorrhagic hydrocephalus and to describe parent preferences for counseling in the neonatal period and beyond. This was a qualitative interview study. Parents of infants born preterm with posthemorrhagic hydrocephalus completed semistructured interviews. Data were analyzed using a content analysis approach. Thematic saturation was reached on parent communication preferences after 10 interviews. Parent experiences of infant hydrocephalus broadly fell into two time periods, the neonatal intensive care unit (NICU) and after NICU discharge. The themes of uncertainty, isolation, hypervigilance, and the need for advocacy were common to each phase. Parents expressed interest in the development of tiered NICU counseling tools that would provide evidence-based and family-centric information to (1) initiate connections with community and peer resources and (2) combat the isolation and hypervigilance that characterized their family experience of living with hydrocephalus. · Infants with posthemorrhagic hydrocephalus are at risk for adverse neurodevelopmental outcomes.. · The parent experience of caring for a child with posthemorrhagic hydrocephalus is not well-described. In this interview study, parents described uncertainty, isolation, and hypervigilance.. · These findings call for structured NICU counseling and longitudinal family supports after discharge..