Neonatal Intensive Care Unit Experience Research Articles

A digital Acceptance and Commitment Therapy and education intervention targeting stress of parents and caregivers with preterm babies in the neonatal intensive care unit: A randomised controlled cluster trial protocol

BackgroundParents with babies in the neonatal intensive care unit (NICU) experience high levels of stress, anxiety, and depression. The NICU experience may also lead to impaired parenting and early childhood socio-emotional problems.Psychosocial interventions can reduce NICU parent distress. Yet many are time-intensive and costly to deliver. Acceptance and Commitment Therapy (ACT), an evidence-based psychological therapy, may address these needs. ACT has been shown to be effective in reducing distress of parents of children with chronic illnesses, particularly when combined with parent education.Therefore, the primary aim of this study is to determine if a digital intervention that uses a brief form of ACT plus parent education will reduce the stress of primary caregivers with preterm babies in the NICU more than a digital education-only intervention or standard care control group. MethodsIn a randomised controlled cluster trial design, participants will be randomly assigned to one of three groups: ACT plus education; education-only; or standard care control. The primary outcome will be parental/caregiver stress levels, measured on the Parental Stress Scale: Neonatal Intensive Care Unit. Secondary outcomes include overall stress, anxiety, and depression. Outcome measures will be evaluated at baseline, two weeks after enrolment, discharge to home, and 3-months post-discharge. ConclusionThis study will explore the efficacy of a digital ACT plus education intervention on parental stress levels. While position papers have advocated for the use of ACT with NICU parents, this study will be the first to test ACT as a stand-alone intervention with this population. Trial registrationThis trial was prospectively registered with the Australian New Zealand Clinical Trials Registry on 14 June 2023 (ACTRN12623000641695p).

Parenting Expectations, NICU Experiences, and Maternal Psychological Outcomes: An Exploratory Mixed-Methods Study.

Infant neonatal intensive care unit (NICU) hospitalization increases maternal risk for psychological distress. However, no universal screening standards exist and predicting maternal risk remains challenging. Reconceptualizing maternal distress in relation to differences between parenting expectations and NICU experiences may illuminate commonalities across a range of experiences. This study explored parenting expectation-experience differences (EEDs) among NICU mothers and assessed correlations between EED scores and psychological outcomes 1 to 5 years post-NICU hospitalization. A 3-phase explanatory sequential mixed-methods design was used. Pearson's correlation coefficients were used to measure relationships between EED scores and maternal psychological outcomes. Reflexive thematic analysis of one-on-one, semi-structured interviews contextualized EED scores. Most participants (92.9%) reported negative EED scores, indicating NICU experiences fell short of parenting expectations. Significant inverse correlations were found between EED scores and maternal outcomes, including depression ( r = -0.25, P < .01), anxiety ( r = -0.25, P < .01) and posttraumatic stress disorder symptoms ( r = -0.41, P < .001), and perceived parenting self-efficacy ( r = -0.28, P < .01). Major qualitative themes included unexpected versus prepared, lost parenting experiences, and surviving and thriving. Data synthesis contextualized EED scores and revealed key differences in meaning ascribed to unmet parenting expectations. Preparing mothers for infant NICU hospitalization and creating a NICU parenting environment, which better supports mothers and their engagement in parenting tasks, may help to reduce differences between parenting expectations and NICU experiences. Further research is needed to elucidate the impacts of parenting EEDs in this population.

Promoción de la autoeficacia en madres con hijos/as que egresan de unidades de cuidado intensivo neonatal

IntroductionThe mothers of newborns who are discharged from a neonatal intensive care unit (NICU) experience stress and anxiety due to the specialized care their child requires at home, affecting their perception of maternal self-efficacy. Objectiveto evaluate the effect of the nursing intervention called Hospital Discharge Plan (HDP) on the promotion of self-efficacy in mothers of newborns discharged from the NICU. MethodQuantitative study, quasi-experimental design with pre-test/post-test in a single group, using the Parental Evaluation Scale applied to a convenience sample of 72 mothers of high-risk newborns from a NICU located in the city of Villavicencio (Colombia). The first measurement was taken between days 3 and 4 before discharge and at 15 days’ post-discharge. Data processing was carried out using the statistical program SPSS, version 21. The intervention was based on the four concepts of self-efficacy by Barbara Resnick. ResultsThe perception of maternal self-efficacy before the intervention showed a median of 8.9 points (RI 7.6-9.5); after the intervention it showed a median of 9.6 points (RI of 10-8.7); a statistically significant p-value < 0.001 was obtained before and after the intervention with the Wilcoxon rank test. ConclusionsEducation and follow-up promoted the development of knowledge and skills in mothers for the care of high-risk newborns. This contributed to the experience of mastery and vicarious experience from the teaching-learning process and contact with the experience of other mothers, which contributes to the effective development of motherhood.

Addressing Health-Related Social Needs and Mental Health Needs in the Neonatal Intensive Care Unit: Exploring Challenges and the Potential of Technology.

Unaddressed health-related social needs (HRSNs) and parental mental health needs in an infant's environment can negatively affect their health outcomes. This study examines the challenges and potential technological solutions for addressing these needs in the neonatal intensive care unit (NICU) setting and beyond. In all, 22 semistructured interviews were conducted with members of the NICU care team and other relevant stakeholders, based on an interpretive description approach. The participants were selected from three safety net hospitals in the U.S. with level IV NICUs. The challenges identified include navigating the multitude of burdens families in the NICU experience, resource constraints within and beyond the health system, a lack of streamlined or consistent processes, no closed-loop referrals to track status and outcomes, and gaps in support postdischarge. Opportunities for leveraging technology to facilitate screening and referral include automating screening, initiating risk-based referrals, using remote check-ins, facilitating resource navigation, tracking referrals, and providing language support. However, technological implementations should avoid perpetuating disparities and consider potential privacy or data-sharing concerns. Although advances in technological health tools alone cannot address all the challenges, they have the potential to offer dynamic tools to support the healthcare setting in identifying and addressing the unique needs and circumstances of each family in the NICU.

Parent Perspectives: Part 2-Considerations for the Transition Home Post-NICU Discharge.

This paper is part two of a series of papers written by the mothers of Neonatal Intensive Care Unit (NICU) graduates. The companion paper, "Parent Perspectives: Part 1-Considerations for Changing the NICU Culture", considers all aspects of the NICU experience and provides recommendations for interventions and improvements from a life-course perspective while families are in the NICU. In part two, the focus is the transition home post-NICU stay. The time after NICU discharge is a critical and sensitive developmental period for NICU babies and their families, and an important life course transition. This paper provides a parent's perspective of how to improve the transition home post-NICU stay. Our perspectives draw on the Life Course Health Development approach, which regards health as an active process that is developed over time based on a person's internal biologic and physiologic systems, their external environment and circumstances, and the interactions or relationships between them. This paper describes a collaborative care model where parents and their healthcare teams work together to develop shared care plans. It also describes how we can build trust and family capacity to support long-term care, ensure family well-being, and link families to needed resources and support that can ease the transition from the NICU back to the home and optimize family health trajectories.

Exploring and Supporting Parents' Stories of Loss in the NICU: A Narrative Study.

Death is no stranger to the neonatal intensive care unit (NICU). Extreme prematurity, congenital abnormalities, and other complexities can turn what was hoped to be a very exciting moment in a family's life into one of despair and grief. There are many infants that not only do not survive but also have a medicalized death necessitating complex decision-making, weighing quality versus duration of life. We can learn from the stories of parents who chose palliative care for their children. In this narrative inquiry study, we elicited bereaved parents' stories and reflections on the lives of their children and the care they received in the NICU. From a narrative ethics perspective, their stories speak to normative aspects of parenting, decision-making, and receiving medical care that affect their moral sense-making of their NICU experiences as well as their longer-term living with the loss of their children. Their stories express the importance of having had meaningful time with their children, maintaining direct and frequent communication, acknowledging uncertainty, and emphasizing compassion as methods of providing support to parents as they navigate their bereavement.

Uncertainty and the NICU Experience: A Qualitative Evaluation of Family and Provider Perspectives.

There is limited information regarding caregiver and provider perspectives on uncertainty across the continuum of the neonatal intensive care unit (NICU) experience. Open-ended semi-structured interviews were conducted with providers and English- and Spanish-speaking caregivers of infants with a history of admission to a quaternary safety-net NICU. Major themes were generated using inductive-deductive thematic analysis. Seventy-six individuals participated in the study: 47 caregivers and 29 providers. The median gestational age of the infants was 29 weeks and 85% were classified as having chronic complex disease per the Pediatric Medical Complexity Algorithm. Most providers were neonatologists (37%) and nurses (27%) and more than half had over ten years of experience. A conceptual model of caregiver uncertainty was developed and key domains included drivers of uncertainty and its impact, and factors influencing coping and adaptation. Our analysis found a positive association between caregiver information gathering, clinical continuity, support systems, maternal mental health supports, and witnessing a child's progress and the development of adjustment to chronic uncertainty. These results suggest key areas for intervention that can promote parental adaptation to the uncertainty inherent in the NICU experience.

‘We are suffering. Nothing is changing.’ Black mother's experiences, communication, and support in the neonatal intensive care unit in the United States: A Qualitative Study

ABSTRACT Objectives Black mothers experience markedly disproportionate maternal morbidity and mortality in the United States, with racism often cited as the root cause manifesting through several pathways. The study examined Black mothers’ perceived provider communication, support needs, and overall experiences in the neonatal intensive care unit (NICU). Design This study used grounded theory embedded in the Black feminist theoretical (BFT) framework to generate new ideas grounded in the data. Data was collected through semi-structured interviews using videoconferencing, with questions related to the mother's overall NICU experiences, communication within the NICU, and perceived support needs. Data were analyzed using thematic analysis. Results Twelve mothers participated in the study; most were married (n = 10), had a cesarean birth, had a previous pregnancy complication (e.g., diabetes, hypertension), had attained a graduate degree or more (n = 9), earned an annual household income of $75,000 or more, and were between 35–44 years of age (n = 7). Three broad domains with several accompanying themes and sub-themes were identified, explicating the mother's experiences in the NICU. Specifically, factors influencing NICU hospitalization for mothers included maternal care/nursing experiences, interactions in the NICU, and the perceived support need that might attenuate negative care and birthing experiences. . Conclusion The study adds to the growing literature championing Black maternal health equity and multilevel quality improvement strategies to foster equitable maternal health. Our study reinforces the need for racially congruent interventions and policy reformations to protect Black birthing people regardless of socioeconomic factors and social class using life course, holistic approaches, and intersectionality mindset. Importantly, using the BFT, this study calls for culturally sensitive research to capture the nuances associated with the multiplicity of experiences of Black people.

Parental perceptions and experiences of care in the surgical neonatal intensive care unit

BackgroundParents endure significant stress when their newborns require surgery while in the neonatal intensive care unit (NICU). Our study aims to explore the surgical NICU experience from the parents’ perspective and identify areas that may improve this experience. A secondary objective was to integrate their feedback to refine the implementation strategy of the neonatal enhanced recovery after surgery (ERAS®) guideline.MethodsIn December 2019, five surgical NICU parents participated in a focus group. Conversation surrounded parents’ perspectives and experiences of the surgical NICU. Inductive analysis was performed to identify data, themes, and concepts that emerged from the discussion.ResultsParticipants identified four major interrelated themes that impacted the surgical parents’ NICU experience. These themes include (1) parental state, both physical and emotional, (2) the altered parental caregiver role which necessitates identifying alternative meaningful parental experiences, (3) the care team dynamic, incorporating consistency and effective communication, and (4) the discharge process which may be significantly eased through graduated, hands-on training.ConclusionKey elements of the neonatal ERAS® guideline address major themes and stressors identified by parents. The parental perspective may help clinicians appreciate the parent surgical NICU experience and assist in improving family-centered care to surgical infants and their families.

Providers’ perspectives of the neonatal intensive care unit context and care provision for adolescent parents: an interpretive description

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.

Skin-to-skin contact-An effective intervention on pain and stress reduction in preterm infants.

The outcomes of pain and stress in preterm infants in the neonatal intensive care units (NICUs) compel the continued search for pain- and stress-reducing interventions. To investigate how skin-to-skin contact (SSC) influences chronic pain and stress in preterm infants in the NICU. The study included 140 preterm infants in the NICU with gestational age less than 34 weeks. The overall design was a baseline-response design. Urine and saliva were collected before (baseline) and after SSC to measure pain and stress markers by enzyme immunoassay method. The behavioral indicators of chronic pain were assessed using the EDIN (Échelle Douleur Inconfort Nouveau-Né-neonatal pain and discomfort). There was a significant decrease in the dopamine level in preterm infants after SSC in comparison with baseline values (85.99 [69.35; 112.20] pg/ml vs. 132.20 [104.80; 183.70] pg/ml), p < 0.001. The β-endorphin and serotonin levels increased after SSC (40.09 [26.81; 70.63] pg/ml vs. 29.87 [20.61; 46.94] pg/ml, p = 0.009 and 25.49 [20.45; 40.08] ng/ml vs. 22.30 [15.13; 31.65] ng/ml, p = 0.011, respectively). A significant decrease in cortisol levels in saliva and urine after SSC in comparison with baseline values (0.125 [0.079; 0.225] μg/dl vs. 0.371 [0.188; 1.002] μg/dl, p = 0.000 and 27.06 [14.59; 35.35] ng/ml vs. 35.25 [19.78; 61.94] ng/ml, p = 0.001, with a simultaneous increase of oxytocin level (57.00 [36.55; 88.49] pg/ml vs. 38.20 [28.78; 56.04] pg/ml, p = 0.009 were revealed. The total pain EDIN score in infants after SSC was below 6 points, significantly decreasing compared to the baseline (p < 0.05). Preterm infants in the NICU experience stress and pain, which were confirmed by the EDIN pain scale and laboratory markers. The level of dopamine and cortisol as pain and stress hormones were reliably high, and normalized after regular SSC. Simultaneously, pain-relieving and anti-stress markers of oxytocin, β-endorphin and serotonin reliably increased in preterm infants in response to the SSC.

Pattern of Congenital Heart Disease In Neonates Conceived In The COVID-19 Era: Single Neonatal Intensive Care Unit Experience

Pattern of Congenital Heart Disease In Neonates Conceived In The COVID-19 Era: Single Neonatal Intensive Care Unit Experience

Evaluation of Short-Term Outcomes of Preterm Infants in 2 Periods: Vermont Oxford Network Results of a Developing Country's Single- Center Level IIIC Neonatal Intensive Care Unit Experience.

This study aimed to compare the short-term outcomes of infants from our level IIIC neonatal intensive care unit in 2 different periods. In this cohort study, data from preterm infants (≤29 weeks and birth weight <1500 g) registered in the Vermont Oxford Network system were divided into 2 periods, the first period between January 1, 2005, and December 31, 2009, and the second between January 1, 2010, and December 31, 2019. There was no difference in the distribution of preterm infants according to their gestational age subgroups (P = .169). Although the survival rate increased significantly in the second period (48.1% vs. 64.3% (P < .001), there was no difference in terms of survival without morbidity (P = .480). The frequency of antenatal care (P < .001), antenatal maternal steroid use (P < .001), cesarean section (P = .025), and small for gestational age (P < .003) increased in the second period. Surfactant treatment in the delivery room (P < .003), neonatal intensive care unit (P < .001), and nasal continuous positive airway pressure use before intubation as a part of initial resuscitation (P < .001), nosocomial infections (P = .001), patent ductus arteriosus requiring medical treatment (P = .011), and necrotizing enterocolitis (P = .014) were significantly more common, but early neonatal sepsis (P = .002) and discharge home with only formula (P = .010) were less in the second period. Differences were noted in the prognosis and treatment choices of preterm infants in the same unit between 2 periods. The analysis of neonatal intensive care unit data, through rigorous methods, may provide opportunities for the development of quality improvement projects to improve the quality of health care in developing countries.

Virtual Care Across the Neonatal Intensive Care Continuum.

The ongoing coronavirus disease 2019 (COVID-19) pandemic has highlighted the need for establishing effective parent and family engagement throughout all aspects of medicine. Though there has been some discussion in the literature regarding the transition from typical outpatient visits to telehealth visits, there has been less written about the inpatient approach to family inclusion. Here, we seek to describe our institution's experience with implementing virtual medicine across the full continuum of the neonatal intensive care unit (NICU) experience, including inpatient rounding, child life family visits, and outpatient high-risk developmental follow-up after discharge.

What Black Mothers with Preterm Infants Want for Their Mental Health Care: A Qualitative Study.

"I think that some culturally sensitive mental health information could have been provided": What Black mothers with preterm infants want for their mental health care: A qualitative study. In the United States, preterm birth (PTB) rates in Black women are 50% higher than in non-Hispanic White and Hispanic mothers. Existing discriminatory sociohistorical and contemporary health care practices have been linked to the alarmingly higher rates of PTB among Black families. While it is well-known that PTB is associated with increased mental health (MH) problems, Black women experience elevated MH burdens due to inequities along the care continuum in the neonatal intensive care unit (NICU). Consequently, culturally responsive MH care holds promises to achieve maternal MH equity. This study aimed to explore the available MH services and resources in the NICU for Black mothers with preterm infants. We also sought to discover potential recommendations and strategies for MH programs through a cultural lens. Semistructured interviews were conducted with Black mothers with preterm infants using a Grounded Theory approach embedded in the Black feminist theory. Eleven mothers who gave birth to a preterm infant between 2008 and 2021 participated in this study. Eight women reported not receiving MH services or resources in the NICU. Interestingly, of the three mothers who received MH referrals/services, two did so one-year postbirth and did not utilize the services. Three main themes emerged: stress and the NICU experience, coping mechanisms, and culturally appropriate MH care with diverse providers are needed. Overall, our finds suggest that MH care is not prioritized in the NICU. Black mothers with preterm infants encounter numerous negative and stressful experiences that exacerbate their MH during and beyond the NICU. However, MH services in the NICU and follow-up services are scarce. Mothers in this study endorsed creating culturally appropriate MH programs that addresses their unique intersections.

Getting in touch. Helping parents and new-born babies to connect in the NICU

ABSTRACT About 15 million premature babies are born every year; more than a million preterm babies die, while among those who survive many may have disabilities. The Neonatal Intensive Care Unit (NICU) becomes a meeting place between life and death. The preterm birth brings with it painful experiences which arouse feelings of guilt, fear of death and the need to mourn the idealised baby. The risk of serious consequences on the mother-child and father-child relationship and on the new-born's psychological and emotional development is a real danger which requires interventions. This paper uses illustrations from work with premature babies and their parents, to describe their dramatic experiences in NICU and the support work offered them, following a psychoanalytic observational model. In this model, active listening to the parents' experiences, as well as observing their baby with them, enables the workers to help the parents who have become parents much earlier than anticipated or wished-for. The workers listen, take in what they see and hear and hope slowly to transform the painful experiences of parents and baby. The work often begins with workers sand parents sharing observation of the new-born. The workers have all observed babies following the teaching of Esther Bick.

Exploring the Influence of a Mindfulness Intervention on the Experiences of Mothers with Infants in Neonatal Intensive Care Units.

Mothers with infants in the neonatal intensive care unit (NICU) are at increased risk of psychological distress, which can have lasting negative impacts on both mother and infant. However, few interventions are available to promote these mothers' mental health and wellbeing. In the context of a pilot randomized controlled trial testing a mindfulness intervention for mothers with infants in the NICU, we explore the experiences of the mothers participating in the mindfulness-based intervention, with mothers in the control group as comparison, and the ways they felt it influenced their time in the NICU. Twenty-six participants (15 participants in the intervention arm and 11 participants in the control arm) recruited from two NICUs in an urban center in Eastern United States completed semi-structured interviews. Interviews explored the mothers' NICU experience as well as experience with the mindfulness and health education (control) programs. Data was analyzed using an iterative, thematic constant comparison process informed by grounded theory. Mothers reported that participation in the mindfulness intervention helped them to calm the chaos through recentering and fostering connections, find comfort through non-judgmental acceptance, gain perspective on the situation, and facilitate self-care. These were experienced only among the mothers in the intervention arm. These themes did not vary based on demographics of the mothers in the mindfulness study arm or their pre-study awareness of mindfulness. Mindfulness interventions may foster new practices and perspectives for mothers with infants in the NICU, potentially leading to improved mental health wellbeing.

Stress, postpartum depression, and anxiety in mothers of neonates admitted in the NICU: A cross-sectional hospital-based study.

Mothers of neonates admitted to a neonatal intensive care unit (NICU) experience heightened distress, anxiety, depression, and trauma symptoms. Despite their prevalence, these conditions are generally neither recognized nor treated due to the constraints of time and concerns about the social acceptability of screening. To study stress, postpartum depression, and anxiety in mothers of neonates admitted to the NICU. One hundred forty consecutive mothers having preterm and low birth weight neonates in the NICU were taken for the study as cases and an equal number of mothers of full-term neonates matched for age and socioeconomic status (SES), were recruited as controls with their informed consent. Subjects were assessed with the Acute Stress Disorder Scale (ASDS), Post-Traumatic Stress Disorder (PTSD) Symptom Scale (PSS), Edinburgh Postnatal Depression Scale (EPDS), and Perinatal Anxiety Screening Scale (PASS). Mothers of preterm neonates in NICU had significantly higher scores on the ASDS, PSS, EPDS, and PASS compared to controls. There was a significant association of ASDS and PSS scores with younger age, higher education, middle SES, joint family, urban residence, unplanned pregnancy, and male child. There was a significant association of the EPDS scores with lower SES, low education, unemployment, and male child. There was a significant association of the PASS scores with younger age, lower SES, and cesarean section. Mothers of preterm neonates admitted to the NICU compared to controls have significantly higher levels of stress, anxiety, and depression.

The Prevalence of PTSD of Mothers and Fathers of High-Risk Infants Admitted to NICU: A Systematic Review.

Admission of a preterm or sick full-term infant to the neonatal intensive care unit (NICU) is a stressful experience for parents. Indeed, the 'NICU experience' may constitute a traumatic event for parents, distinct from other birth-related trauma, leading to significant and ongoing posttraumatic stress disorder (PTSD) symptoms. However, the rates at which this outcome occurs are not well understood. This review aimed to identify the prevalence of PTSD in mothers and fathers of high-risk infants admitted to the NICU, specifically focusing on the NICU experience as the index trauma. The PRISMA-P: Preferred Reporting Items for Systematic Review and Meta-Analysis Protocols were used to conduct this review. We searched PsycINFO, PubMed, Scopus, EMBASE, Web of Science, ProQuest Dissertations and Theses databases, and reference lists of included articles (1980-2021). Two independent reviewers screened titles and abstracts and conducted the full-text screening assessment. Of the 707 records identified, seven studies met the inclusion criteria. In this systematic review, PTSD symptomatology was assessed by self-report measures rather than a clinical interview. We identified significant variations in the methodologies and quality between studies, with a wide variation of reported prevalence rates of PTSD of 4.5-30% in mothers and 0-33% in fathers. Overall, the findings indicate that up to one-third of parents experience PTSD symptomatology related to the NICU experience. These results emphasize the importance of universal routine antenatal and postnatal screening for symptoms of PTSD to identify parents at risk of distress during the NICU experience and after discharge.Trial registration: The study protocol was registered with Prospero registration number CRD42020154548 on 28 April 2020.

Parents' Experience in an Italian NICU Implementing NIDCAP-Based Care: A Qualitative Study.

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.