Parental impact during and after neonatal intensive care admission

Abstract

Parents play a pivotal role in neurodevelopmental outcomes of their children in the neonatal intensive care unit (NICU) and beyond. Integration of parents in clinical care and research is synergistic. Engaged parents yield more comprehensive clinical care and more robust and meaningful research products. Subsequently, successful clinical and research efforts improve outcomes for children. We review strategies for parental integration into NICU clinical care and research, including parental involvement in therapeutic interventions and neurodevelopmental care, and effective communication strategies for clinicians and researchers. We discuss challenges in neonatal trials and emphasize the need for building a culture of research, collaborative partnerships with patient advocacy organizations, and ongoing support beyond the NICU. Overall, we call for recognizing and fostering the impactful role of parents as teammates with clinicians and researchers in optimizing neurodevelopmental outcomes in the NICU and beyond.

Introduction

Clearly, over the formative years of a child’s life, no person has a more profound impact on a child’s life course than a parent. When effectively integrated with the clinical team, parents can have a meaningful impact during their child’s Neonatal Intensive Care Unit (NICU) course as well. The goal of this manuscript is to highlight specific ways parents can impact both the clinical course and research opportunities in the NICU and beyond, and how clinicians and researchers can foster this parental impact. There is a robust body of research showing improvements to outcomes when family-centered care is implemented – from reducing neonatal sepsis¹ to improving maternal-infant bonding² and reducing maternal and infant stress levels.³

Traditional parenting outside of a NICU context centers parents as the primary decision-makers on behalf of their baby. When an infant is critically ill, the medical team takes the driver’s seat with implementing appropriate interventions; while medically necessary, this often leaves parents feeling a loss of control over their child’s course and unsure of their role.⁴ In post-NICU care, parents resume their traditional roles and while they can get input and navigation assistance from physicians, therapists, and others, parents ultimately bear responsibility and control over care decisions themselves.

As infants become more medically stable through the NICU hospitalization course, this decision-making “driver” responsibility shifts from medical team to parents. This shift is most successful when it is a graded transition and not an abrupt role reversal. NICU culture has great power to effectively prepare parents for this shift. Through shared decision-making and family-centered care, each member of the care team – clinicians and parents alike - brings expertise to the multidisciplinary care of the baby. When this model is in place and parents feel integrated into the clinical and research teams, parents are more empowered, engaged, are more receptive to the medical team and can contribute meaningfully to both clinical and research efforts. Establishing this bidirectional relationship early behooves researchers who are interested in long-term outcome measures because engaged parents are more likely to persist through longitudinal assessments.⁵

In this manuscript, we intend to be expansive and consider the course of children who have had NICU admissions for any medical or surgical reason. The existing literature has predominantly focused on premature infants, often overlooking the significant population of infants admitted to the NICU for other reasons including hypoxic-ischemic encephalopathy (HIE), infections, hydrocephalus, and others. When we use the term parents, we are referring to the primary caregivers of the child, including legal guardians. In many instances, the same principles we describe for parents are true for other extended family members. Lastly, we bring to this manuscript multiple perspectives, both from our professional roles as physician/researcher or advocate, and from our personal roles as parents who have navigated NICU care with our own children.

In the NICU: Parent integration into clinical care

Children have better outcomes when families are integrated into their clinical care, including reduced length of stay and decreased readmissions.⁶ Parent and clinician teams can achieve this through family-centered care strategies. The NICU was an early setting for the adoption of family-centered care principles,^7-9 and subsequent research has shown that integration of the family can lead to improved neurodevelopmental outcomes.^6,10,11 This paradigm shift has aimed to empower parents, acknowledge them as essential members of the healthcare team, and foster collaboration between healthcare professionals and families for the optimal development and well-being of preterm and critically ill infants. Clinicians can promote these strategies and empower families through education and communication tools (Fig. 1).

Fig. 1.

In the NICU: Parents integrated into clinical care. Children have better outcomes when families are integrated into their clinical care. Parents can achieve this through family-centered care strategies. Clinicians can promote these strategies and empower families through education and communication tools such as ALIGN³⁰ and oUR-HOPE.³¹

There is strong evidence that the environment is a driving force for determining outcomes - in some cases at least as important as the underlying brain injury or medical diagnoses in the NICU.¹² For example, in a cohort of very preterm neonates, the effect size of maternal education on full-scale IQ assessed at age 4.5 years was similar to that of white matter injury volume or intraventricular hemorrhage of infants born very preterm.¹³ Sharing this evidence with families can help caregivers recognize their power in a situation in which they otherwise may feel they have lost control.

How can parents integrate into care?

Family involvement - even with basic tasks such as holding, feeding, bathing, and cares (e.g., changing pulse ox, diapers) - can promote improved neurodevelopment for the infant. When studying premature infants <32 weeks gestation at high-risk for adverse neurodevelopmental outcomes, such Family Centered Care yielded improved scores across all domains of the Bayley-III vs. controls.⁶ Premature infants whose parents held them more often in the NICU had better short-term outcomes, and infants who were held skin-to-skin had better outcomes both at term and better gross motor development at 4-5 years of age.¹⁴ There is also emerging evidence that can be applied to other NICU populations where barriers still exist for equity in elements of family-centered care. For example, maternal holding of infants during therapeutic hypothermia for HIE shows it is safe¹⁵ for the majority of babies and may lead to improved vital signs and lower cortisol in both infant and mother.¹⁶

Babies receiving care in the NICU have numerous blood draws and other painful procedures during their clinical course, estimated at 14 painful procedures each day.¹⁷ There is evidence showing that parental involvement in care can decrease the negative impacts of these procedures through interventions such as skin-to-skin/kangaroo care holding, breastfeeding, and cuddling.^18,19

Involvement of neonatal physical, occupational and speech therapists early in the clinical course can empower families: from understanding baby cues to learning about positioning, stretching, and infant massage. These can become essential elements in neurodevelopmental care that parents feel confident to implement at the bedside outside of the limited hours that therapists are available for direct therapy. There are several programs that are available from neonatal therapists, both free and commercially licensed. The Supporting and Enhancing NICU Sensory Experiences (SENSE) program, for example, has guidelines on creating optimal sensory environments for infants from 24 weeks gestation through term²⁰ with primary attention to maximizing parental involvement even when parents cannot be physically present at the bedside. This and other neonatal therapy programs include recommendations such as kangaroo care, hand hugs, providing a scent cloth that smells like the parent or breast milk, recorded sound (music, maternal voice), cycling lights, and position changes. While there is much evidence that developmental NICU programs improve short-term outcomes, additional research is needed to investigate the long-term impacts of these interventions.²¹

Engaging in developmental therapies in the NICU is a natural opportunity to inform caregivers about Early Intervention (EI) therapy programs that they may enroll in post-discharge, as well as introduce families to the role that therapists play in neurodevelopment for children at risk of developmental delays and disabilities. Although EI programming will begin after discharge, parents should be aware that these programs exist, and can provide ongoing therapies and teaching that will evolve as the child grows and their needs vary.

Many of the strategies discussed above require caregivers to be physically present at the bedside, but to enable this, NICU environments may need to be adapted. Ideally, families should be welcome to be present at their infant’s bedside for most of the 24 hours of the day, and only have restricted visitation for short time intervals. Caregivers at a minimum should be able to sit in a chair at their child’s bedside, and ideally have some level of privacy especially if breastfeeding may be possible for the infant. Ideally, there would be space available for two caregivers and accommodations for at least one parent to sleep at the child’s bedside. For families whose home is far from the NICU, access to nearby lodging can make a critical difference in their ability to be present at bedside. Additionally, any support in navigating medical leave from work, childcare for siblings of the infant, or navigating the bureaucracy of other responsibilities can make substantial differences in the ability of parents to be present at their infant’s bedside.²² When caregivers cannot be physically present, the ability to see their child via remote video can be comforting. Telehealth is an important consideration for including caregivers in family-centered rounds. There are abundant advocacy opportunities to help meet the needs of families – from increasing paid parental leave to NICU environmental considerations outlined.

How can clinicians effectively communicate with and educate parents to empower them in clinical care?

Families entering the NICU have varying communication needs, degrees of literacy, and specifically, health literacy. Clinicians must meet families where they are with their understanding, and provide thoughtful, intentional, empathic, unbiased, and accurate communication and information sharing. This sets a foundation for building health literacy in medically complex cases. Communication and relationshipbuilding can empower families to understand their child’s condition and clinical care, to ask thoughtful questions, and to participate in shared decision-making, a key component in family-centered care.²³

The evolution of family-centered care models reflects a broader cultural shift in healthcare toward recognizing the integral role of families in the healing process – for neonates and their parent/caregivers.²⁴ Factors such as social determinants of health and considering the diversity of family structures, involvement of parents and guardians, maternal health, and each family’s life experiences can shape the way families engage and interact in the NICU.²⁵ Special attention should be given to implicit bias and underrepresentation of NICU cohorts in messaging, support, and involvement in care; for example, NICU messaging is often centered around prematurity and may exclude full-term sick infants. Additionally, providers should consider the impact of both trauma due to the circumstances of the NICU, and the background of trauma families may have faced before the NICU.²⁶

There can be many challenges to clear communication in the NICU, including relaying diagnoses of exclusion and prognostic uncertainty. Starting with the most basic communication level between patient-family and provider, communication should primarily take place in the individual’s first language. Clinicians should be cognizant that each parent may have a different preferred first language than their partner. Many tools exist, both in hospital settings and with technology, to bridge these gaps – including translation and interpreter services, educational materials offered in first languages, and connection with other families who speak the first language to offer peer support during the NICU course.²⁷

Both parents and clinicians have expressed the importance of clearly naming specific diagnoses to ensure families have an accurate understanding of their child’s health conditions.^28,29 Not naming a specific diagnosis, even if conditioned with “probable”, can break trust with families who may feel that the medical team may be hiding information. Naming a probable diagnosis, updating the family as the clinical course progresses with more clarity, and garnering feedback from the family about any diagnostic uncertainty and confusion can build stronger health literacy and relationships between families and the medical model of care. Additionally, specific etiological naming and understanding is critical for families to connect to appropriate clinical care, clinical trials, and longitudinal support including with patient advocacy organizations and parents of similarly affected children. Connecting with patient advocacy organizations and other parents not only helps parents learn about their child’s condition and find providers, but it also creates a sense of community that has a tangible impact on the well-being of the child and the family as a whole.

There are many communication tools available for clinicians that give guidance and framework to facilitate difficult conversations relating to diagnosis, prognosis, shared decision- making and redirection of care. Some of these are both non-commercially available such as the ALIGN framework³⁰ and oUR-HOPE approach,³¹ and some are commercially available like the VitalTalk methodologies in the context of neonatology.³² These useful tools can be practiced in workshop settings among colleagues, as well as with engaged families and advocates. They have been shown to improve communication, build trust between families and physicians, and build health literacy – skills that families need long term to navigate life with potential medical complexity.³³

In the NICU: Parent integration into research

Neonatal trials have been historically difficult to conduct, and neonatal drug and device development has lagged behind other populations due to the perception of neonates as fragile.³⁴ Lewis, et al state ”Neonatal studies involve a vulnerable population, rare diseases, increased morbidity and mortality, and numerous ethical issues. These trials often include time-sensitive enrollment, complicated consent forms, long study durations (including long-term follow-up), and complex endpoints.”³⁴ In one analysis, attrition rates were found up to 70%.³⁵ When parents are included in planning research, they “provide critical insight into inclusion criteria, consent processes, outcome measures, enrollment, participant engagement, retention, and the need for long-term follow-up.”³⁴ Parents can and should also have roles integrated into the research team including in prioritizing research projects, designing trials, collection and interpretation of data, participation in data safety monitoring committees, and publication and presentation of results.³⁶

Parental integration into research can aid researcher’s goals by driving robust recruitment, obtaining meaningful data and impacting outcomes. Here we consider actions for clinicians and researchers to successfully integrate parents when planning and performing a new study, and when analyzing and communicating its results. Clinicians have an opportunity to build a culture of research with families in the NICU (Fig. 2). This can be accomplished via open discussions with families about what in clinical practice is evidence-based and what is standard practice despite knowledge gaps. They can explain the concept of clinical equipoise, and share the history of participation that resulted in innovation and improved therapies. Families experiencing acute care with their newborns may be perceived as unable to accept information or overwhelmed with their own medical complexities resulting in their infant’s NICU stay. Clinicians should ensure families are aware of studies for which their child meets inclusion criteria; don’t presume any family will not consent - they must be offered the opportunity to participate.

Fig. 2.

In the NICU: Parents integrated into research. Research recruitment is facilitated and results are more impactful when parents are fully integrated into the research process. Researchers and clinicians can do this both when interacting with parents during their child’s NICU course, and when planning and performing research studies.

Early engagement of parents is paramount for successful enrollment in clinical trials, emphasizing the need for strategic communication and targeted recruitment strategies. Leveraging insights from previously involved parents can serve as a catalyst for attracting new participants, fostering a sense of community and shared understanding. To optimize this process, the establishment of stakeholder panels or focus groups becomes instrumental in gauging the perspectives and preferences of parents, ensuring that research design aligns with their experiences and expectations. While study recruitment traditionally comes from the medical team, parent advocacy groups are a trusted alternative source to engage new families in research.³⁷ Core outcomes have traditionally been measures of neurodevelopmental impairment and mortality, which may fail to capture the outcomes that matter most to families.³⁶ When communicating these outcomes, researchers must also be cognizant of bias in interpreting a range of personal experiences and feelings about death and disability.³⁸ Therefore, it is recommended to partner with patient-families to identify what core outcomes matter most to them³⁹ and how to best communicate them.

The NICU setting presents unique challenges to enroll in trials, and the nature of many disease courses for babies with extensive follow up activities and appointments can contribute to attrition. Obtaining informed consent including parents who may be hospitalized in a different location from the infant, urgent timelines for enrolling in a study within a few hours of birth, perceptions and relationships of various clinical team members, and birth parents who may be undergoing medical procedures themselves are some of the key challenges to enrollment. Weiss et al. also delved into how parents experience recruitment post-trial for the HEAL study⁴⁰ learning that parents have a preference for being approached by a member of their child’s medical team vs. members of the research team, and were more likely to enroll when they were approached by a member of their child’s medical team as they had established trust and rapport with those providers. In addition, consideration of the environment for consenting should include the potential use of telehealth, if available. Accessible, culturally competent, easy-to-understand supplementary information offered in multiple formats (written, auditory, video) across various literacy levels can help ensure access to trial information is equitable to all families,⁴¹ which can lead to better enrollment rates.

Engaging patient advocacy organizations in research is a directive from regulatory and academic agencies in many parts of the world. Many active patient advocacy organizations in neonatal neurology can educate families about the clinical equipoise that drives clinical trials. They can also consult on best practices from lived experiences to decrease gaps in enrollment demographics, such as traditionally marginalized populations, and assist with strategic communication and longitudinal engagement with patient-families enrolled for optimal data capture, analysis, and study result dissemination.

Family engagement should not be tokenized or a “checkbox”. Trial design and implementation can improve when researchers and clinicians bring intentionality to their partnerships. Engaged families want to give their input and have it validated and used, not simply because a funding entity requires their mere presence. To enhance equity, researchers viewing parents as equitable partners will find greater engagement and meaningful, continued input longitudinally. This equity involves compensating parents for their time, offering co-authorship and presentation opportunities, and ensuring their ownership of data, aligning with emerging models in which patients or caregivers own centralized data for various studies.⁴² Engaged patient-families should also be representative of the specific population being studied as there are expressed differences in lived experience between various cohorts in the NICU, including cohorts by gestational age, race/ethnicity, and by diagnosis.²⁸

Communication strategies play a central role in the design and implementation of studies, not only during enrollment but also throughout the NICU stay and beyond. Transparent reporting of outcomes, dissemination of study results, and ongoing engagement of participants during and after the trial period are crucial components. Interactive engagement design is being more widely implemented by many neonatal researchers who are creating external websites, social media handles, graphic-based abstracts, and infographics that allow not only prospective and enrolled participants to view updates about the study, but also engage the wider public.⁴³ Many of these elements are co-created by engaged patient-family stakeholders in the trial planning process, and in study completion in the dissemination phase, like what can be found on the Neonatal Seizure Registry website.⁴⁴

Beyond the NICU: Parent integration into clinical care and research

Parenting, clinical care, and research do not stop when babies are discharged from the NICU. After the NICU, parents continue to have the greatest impact on their child’s neurodevelopmental and health outcomes, and clinicians and researchers can help set them up for success (Fig. 3).

Fig. 3.

Beyond the NICU: Parents integrated into clinical care and research. Parents need continued education as they transition care and as clinical course shifts in their child’s life. Researchers can partner with patient-families and patient advocacy and support organizations to continue a culture of research and optimize participation and engagement, longitudinally.

Engaged caregivers have a significant impact on outcomes for the child.¹³ It is important for clinicians to educate families on the critical impact the home environment can have on the child’s outcome, the outpatient landscape of therapies and support systems, and the impact of early intervention therapies on neurodevelopment.⁴⁵ In Bush, et al,⁴⁶ the authors identify the bidirectional relationship between parents and their children’s development, tying in social determinants of health with the home environment, parental behavior, parental mental health, and family composition. About 40–50 % of NICU parents, both birth parents and non-birthing partners, are diagnosed with mental health disorders such as anxiety, depression and post-traumatic stress disorder.⁴⁷ Preterm babies in higher socioeconomic classes and higher levels of parental education had better neurodevelopmental outcomes than their peers.^48-50 Socioeconomic status and parental education are markers representing the overall environment in which a child grows, and are not the direct causal etiology of these outcomes. Regardless of the proximate etiology, this remarkable impact of the child-rearing environment showcases the importance of connecting families to early intervention therapies, attending to parental mental health and stress reduction, with the particular goal of achieving equity for those families impacted by higher-risk social determinants of health.

As babies begin to either meet or miss milestones and clinical course shifts, outpatient clinicians need to continue building health literacy and shared decision-making,⁵¹ including specific education about new diagnoses, a focus on building trusting relationships, and assisting families in evaluating if certain therapies are worth pursuing. In particular, clinicians should create an environment where parents feel they can openly discuss without judgment what therapies or interventions they might be considering that can include alternative therapies, disproven therapies specifically marketed to families of children with brain injuries such as hyperbaric oxygen therapy,⁵² and interventions with limited safety or efficacy data. This can be accomplished by becoming a champion for the patient and family by continuing a culture of research through bidirectional communication and learning. Clinicians should be curious about the family’s interest in pursuing clinical trials and provide information about any trial or study the child may qualify for, as well as updates on outcome data that apply to the child, and diagnosis-specific information from advocacy and support organizations.

Researchers who engage parents in post-NICU life should consider the definition of “long term” in their field of study, and whether it aligns with the patient perspective of long term. For instance, neonatal long-term research and clinical follow-up often end between 24 and 36 months.⁵³ Yet, children’s brains have a tremendous amount of growth and learning to complete beyond 3 years old, particularly in the cognitive and behavioral domains.^54,55 While severe outcomes are more easily predicted early, most children with neonatal brain injury fall in a spectrum that ranges from no impairment to mild or moderate impairment, a range that has drastically different consequences for the daily life of the child and their family.^38,56 Thus, meaningful predictions of neurodevelopmental outcomes from neonatal brain injury can be difficult to predict for many years beyond the NICU.

From a parental perspective, “long term” often means the transition to adulthood; researchers and funding agencies should prioritize essential data capture and analysis of these outcomes. Patient advocacy and support groups are the epicenters of the lived experiences of the communities they connect and support. Beyond elevating the unmet needs of their specific communities, they retain an in-depth understanding of neurodevelopmental trajectories that may be important to researchers given the paucity of longitudinal patient registries and challenges with the accuracy of biomarkers used for prognostication.⁵⁷ Identifying meaningful outcome measures beyond imperfect traditional assessments, such as Bayley Scales of Infant and Toddler Development or IQ scores, becomes essential to truly understand the impact of NICU experiences on a child’s life.³⁶ Collaborative efforts with patient advocacy groups, as seen in successful engagement post-NICU, can help researchers bridge the gap between research and real-world implications, ensuring sustained involvement and minimizing loss to follow-up.

For studies with NICU enrollment, attrition is a significant concern; this can derail potential impactful therapeutic interventions as data cannot be captured and analyzed for effectiveness. Researchers should consider developing longitudinal engagement and communication plans co-created with the patient populations being studied, and with consideration of social determinants of health with the goal of equity in meeting the needs of participants.⁵⁸ Shellhaas, et al found that families who had lower income and resources were less likely to attend in-person appointments, which may lead to under-representation of key groups in studies that require in-person neurodevelopmental assessments.⁵⁸ Future studies can implement measures such as increased compensation on a sliding scale to ensure lower-income participants have adequate resourcing for transportation, childcare, and missed work opportunities. Additionally, it will be fruitful to develop outcome measures that can be assessed via telehealth or caregiver surveys that can provide comparable data with a more equitable approach for families. Researchers can implement best practices gained from neonatal studies structured with attention to co-creation with multi-stakeholders, continue to engage throughout the study period, and problem-solve in real-time as barriers come along. In addition, many patient advocacy organizations have credentialed clinicians on staff in social work, child life, and other disciplines which can augment study sponsor resources for continuity and psychosocial support.⁵⁹

Conclusion

The integration of parents into both clinical care and research within the Neonatal Intensive Care Unit and after discharge is paramount for optimizing the well-being of infants with neurological injury. The principles of family-centered care using a multidisciplinary team approach set the stage for parents to understand and participate in a nurturing environment. The use of communication tools like the ALIGN Framework, oUR-HOPE Approach, and VitalTalk NURSE Statements further enhances effective interaction between healthcare providers and parents.

The integration of parents into research processes within the NICU demands transparency and collaboration for longitudinal success. Establishing a culture of research involves open discussions about evidence-based practices and the clarifying clinical equipoise. Engaging with patient advocacy organizations early in study design and involving parents with relevant lived experiences enhances the relevance and impact of research. Furthermore, addressing social determinants of health and planning for longitudinal follow-up are vital components of responsible research practices.

Beyond the NICU, clinicians are encouraged to empower parents with data, shared decision-making, and understanding of the outpatient landscape, including early intervention, school-based services, and private therapies. Continuation of health literacy initiatives and fostering a culture of research remain crucial as the clinical course transitions through development. Researchers engaging with parents in post-NICU life should broaden their perspective on the "long term," ensuring ongoing support and connections to resources, expand their knowledge of patient-family lived experience, and seek out partnerships with patient advocacy and support organizations. In essence, there is ample opportunity to improve outcomes for children by building more empowered families and advancing research when acknowledging the essential role parents play in neurodevelopmental outcomes in the NICU and beyond.