Ethical Consequences of Technological Mediation on Parental Decision-Making Experiences in the Neonatal Intensive Care Unit.

The neonatal intensive care unit (NICU) is a morally charged space in which parents may be confronted with difficult decisions about the treatment of their newborns, decisions often complicated and created by the increasing use of technologies. This paper adopts a postphenomenological approach to explore the ethical consequences of technological mediation on parental treatment decision-making in the NICU. Semi-structured interviews were conducted with parents of children who received invasive technological support in the NICU to better understand how they made treatment decisions or decisions about specific interventions during their child's hospitalization. The findings suggest that technological mediation-or the various ways in which humans can interact with their world via technologies-contributes to experiences of ambiguity, ambivalence, and alienation in parental decision-making. The ambiguity of invasive NICU technologies can create uncertainty in a decision, which can then lead to internal ambivalence about which decision to make. Ultimately, this ambiguity and ambivalence may lead to alienation from one's child, as parents are disconnected physically and emotionally from the decision and thus their child. Articulating the effects of technological mediation on parental decision-making is a key step in addressing decisional conflict in neonatal intensive care settings and better supporting parents in their decision-making roles.

Ten Years of Neonatal Intensive Care Adaption to the Infants' Needs: Implementation of a Family-Centered Care Model with Single-Family Rooms in Norway.

Ten years ago, the Neonatal intensive care unit in Drammen, Norway, implemented Single-Family Rooms (SFR), replacing the traditional open bay (OB) unit. Welcoming parents to stay together with their infant 24 h per day, seven days per week, was both challenging and inspiring. The aim of this paper is to describe the implementation of SFR and how they have contributed to a cultural change among the interprofessional staff. Parents want to participate in infant care, but to do so, they need information and supervision from nurses, as well as emotional support. Although SFR protect infants and provide private accommodation for parents, nurses may feel isolated and lack peer support. Our paper describes how we managed to systematically reorganize the nurse's workflow by using a Plan-Do-Study-Act (PDSA) cycle approach. Significant milestones are identified, and the implementation processes are displayed. The continuous parental presence has changed the way we perceive the family as a care recipient and how we involve the parents in daily care. We provide visions for the future with further developments of care adapted to infants' needs by providing neonatal intensive care with parents as equal partners.

'Opportunity to bond and a sense of normality': Parent and staff views of cuddling babies undergoing therapeutic hypothermia in neonatal intensive care: 'CoolCuddle'.

BACKGROUND: Currently, parents whose sick babies are undergoing three days of cooling therapy for hypoxic-ischaemic encephalopathy in neonatal intensive care units (NICUs) are not permitted to cuddle their cooled babies, due to concerns of warming the baby or dislodging breathing tubes or vascular catheters. Parents want to stay and care for their cooled babies and have reported that bonding is adversely affected when they are not permitted to hold them. DESIGN AND PARTICIPANTS: Qualitative interviews with 21 parents of cooled babies in NICU (11 mothers and 10 fathers) and 10 neonatal staff (4 consultants and 6 nurses) explored their views and experiences of an intervention to enable parents to cuddle their cooled babies (CoolCuddle). Thematic analysis methods were used to develop the themes and compare them between parents and staff. RESULTS: Five themes were produced. Three themes were comparable between parents and staff: Closeness, a sense of normality and reassurance and support. An additional parent theme reflected their mixed feelings about initial participation as they were apprehensive, but felt that it was an amazing opportunity. Parents and staff described the closeness between parents and babies as important for bonding and breastfeeding. Fathers particularly appreciated the opportunity to hold and bond with their infants. Parents valued the reassurance and support received from staff, and the cuddles helped them feel more normal and more like a family at a very stressful time. In a final staff theme, they discussed the skills, number of staff and training needed to undertake CoolCuddle in NICU. CONCLUSIONS: Parents cuddling their babies during cooling therapy enhanced parent-infant bonding and family-centred care in NICU and was positively received. Adverse perinatal mental health, impaired mother-infant bonding and their effects on the establishment of breastfeeding may be ameliorated by introducing CoolCuddle. PATIENT CONTRIBUTION: Our parent advisors contributed to the interview topic guides and endorsed the themes from the analysis.

Analysis of communication and logistic processes in neonatal intensive care unit.

BACKGROUND: In neonatology, parents play a central role as guarantors of the new-born's autonomy. Notifying parents about their infant's status in neonatal critical care is an integral part of the care. However, conveying this information can be very difficult for physicians and the neonatal medical team. The objective of this work is to assess the dimensions and dynamic processes of critical care communications in neonatal intensive care in order to enhance the development of theoretical and applied knowledge of these discussions. METHODS: This qualitative, descriptive study was conducted on critical care new-borns less than 28 days-old who were hospitalized in a neonatal intensive care unit. Verbatim communications with the parents were recorded using a dictaphone. RESULTS: The verbatim information had five themes: (a) critical care, (b) establishing the doctor-patient relationship, (c) assistance in decision making, (d) Socio-affective and (e) socio-symbolic dimensions. Our recordings underscored both the necessity of communication skills and the obligation to communicate effectively. Analysis of the dynamics of the communication process, according to the categories of delivering difficult information, showed few significant differences. CONCLUSION: Physician training needs to include how to effectively communicate to parents to optimize their participation and cooperation in managing their care.

Impacts of Neonatal Hospitalization on Families during the 2019 Coronavirus Pandemic.

OBJECTIVE: Limited data are available regarding family and financial well-being among parents whose infants were hospitalized during the 2019 coronavirus (COVID-19) pandemic. The study objective was to evaluate the family and financial well-being of parents whose infants were hospitalized in the neonatal intensive care unit (NICU) during COVID-19. STUDY DESIGN: Parents were recruited for this online, cross-sectional survey via support groups on social media. Data collection was completed between May 18, 2020 and July 31, 2020. The final sample consisted of 178 parents, who had an infant hospitalized in an NICU between February 1, 2020 and July 31, 2020. The primary outcomes were impact on family life and financial stability, as measured by the Impact on Family scale, an instrument that evaluates changes to family life as a result of infant or childhood illness. RESULTS: Of the 178 parent respondents, 173 (97%) were mothers, 107 (59.4%) were non-Hispanic White, and 127 (69.5%) of the infants were born prematurely. Parents reported significant family impact and greater financial difficulty. Extremely premature infants, lower household income, parent mental health, and lower parental confidence were predictive of greater impacts on family life. CONCLUSION: Parents reported significant family and financial impacts during their infant's hospitalization amid COVID-19. Further studies are needed to guide clinical practice and inform family-supportive resources that can mitigate consequences to family well-being. KEY POINTS: · Impact of infant hospitalization in the context of COVID-19 is largely unknown.. · In a cohort of NICU parents during COVID-19, they reported changes to family life and finances.. · Greater impacts were reported by parents with lower income, confidence, and very premature infants..

COVID-19 and the NICU: #Zeroseparation.

COVID-19's first wave created chaos for new NICU families as they struggled to cope with the challenge of a fragile infant along with a pandemic. Safety was paramount due to a lack of understanding around how the virus transmits, but much has been learned since then. The next wave of the virus needs to have a rethink around family separation. World leader organization European Foundation for the Care of Newborn Infants (EFCNI) provides insight into the challenges with the first wave and suggests ideas around rethinking how families interact with their baby in the subsequent waves.

Clinical evolution of cases of COVID-19 infection in neopediatrics: a scoping review.

OBJECTIVE: to map the knowledge about the clinical findings, treatment and outcome of newborns and children infected with COVID-19. METHODS: a scoping review with search of eight databases and electronic search engine in April 2020. RESULTS: the 12 studies analyzed showed that the main clinical findings in this population were nasal congestion, fever, respiratory distress, diarrhea, fatigue, dry cough, increased C-reactive protein, leukopenia, lymphopenia, thrombocytopenia, elevated procalcitonin, bilateral ground-glass opacity, pulmonary consolidation, and pneumonia. Antivirals, respiratory support, immunomodulatory therapy, glucocorticoids, antibiotics and alpha interferon were used as treatment. The presence of a cure with hospital discharge is present in most cases. FINAL CONSIDERATIONS: most patients required hospitalization, but it evolved to cure. This study provided a greater scientific basis by showing clinical findings, treatment, and outcomes in neopediatric patients with COVID-19.

Infant-Family Mental Health in the NICU: A Mixed-Methods Study Exploring Referral Pathways and Family Engagement.

Parents and infants in the neonatal intensive care unit (NICU) are exposed to considerable stress, and infant-family mental health (IFMH) services foster emotional well-being in the context of the parent-infant relationship. This mixed-methods study examined the role of an IFMH program introduced in a level 4 NICU. The study included (1) retrospective medical record review of NICU patients who were referred to the IFMH program and (2) qualitative interviews with NICU nurse managers, neonatologists, and medical social workers to explore their understanding of the IFMH program, explore the referral pathways and factors that supported family engagement, and identify specific recommendations for program improvement. Of the 311 infant-parent dyads referred to the IFMH program, 62% had at least one session and Spanish-speaking families were more likely to engage. Of those families receiving services, about one-third had brief intervention, one-third had 4 to 10 sessions, and one-third had long-term services, including in-home after-discharge services. Qualitative interviews with health providers identified unique qualities of the IFMH program and why families were and were not referred to the program. Recommendations centered on adding a full-time IFMH mental health provider to the NICU and increasing communication and integration between the IFMH program and the medical team.

Effect of a Parent Empowerment Program on Parental Stress, Satisfaction, and Length of Stay in the Neonatal Intensive Care Unit.

Parental stress is high when infants are admitted to a neonatal intensive care unit in community-based hospital. This quasi-experimental study explored the effect of implementing the "Creating Opportunities for Parent Empowerment" (COPE) program on parental stress, postpartum depression, parental satisfaction with care, and length of stay in a community-based hospital. A cohort of nurses completed a 1-day "COPE for HOPE" parent empowerment training session. A nurse implemented the COPE parent training at the bedside soon after birth and extended throughout hospitalization. The following instruments were used to collect data: a demographic data sheet, Parental Stress Scale: Neonatal Intensive Care Unit, Edinburgh Postnatal Depression Scale, and an investigator-designed parent satisfaction survey. Forty-nine parent sets participated in the study (29 in the intervention group, 20 in the comparison group). A significant difference was found between the groups related to lower parental stress. There was no difference in terms of parental depression scores or length of hospital stay. However, clear trends revealed that parents in the COPE group exhibited lower depression scores. Parents in both groups reported being greater than 95% satisfied with care across all items. These findings may motivate administrators in other community-based hospitals to implement this intervention.

An Integrative Review of Fathers' Needs in the Neonatal Intensive Care Unit.

Having a child admitted to the neonatal intensive care unit (NICU) is traumatic for both parents, but mothers and fathers may have different experiences, and thus, different needs. The purpose of this integrative review was to identify the needs of fathers of premature infants. A systematic review of 7 databases was conducted, and studies were evaluated by the Critical Appraisal Programme checklist. To provide structure for searching and reporting findings, the Whittemore and Knafle interpretive methodology and the Preferred Reporting Items for Systematic Reviews and Meta-Analysis methodology were used. A total of 19 articles were identified. The resulting themes included: need to be close to infant and involved in infant's care; need for information; need for a better NICU environment; need for emotional support; and need for a relationship with the NICU staff.

Asynchronous video messaging promotes family involvement and mitigates separation in neonatal care.

OBJECTIVE: To evaluate the parent and staff experience of a secure video messaging service as a component of neonatal care. DESIGN: Multicentre evaluation incorporating quantitative and qualitative items. SETTING: Level II and level III UK neonatal units. POPULATION: Families of neonatal inpatients and neonatal staff. INTERVENTION: Use of a secure, cloud-based asynchronous video messaging service to send short messages from neonatal staff to families. Evaluation undertaken July-November 2019. MAIN OUTCOME MEASURES: Parental experience, including anxiety, involvement in care, relationships between parents and staff, and breastmilk expression. RESULTS: In pre-implementation surveys (n=41), families reported high levels of stress and anxiety and were receptive to use of the service. In post-implementation surveys (n=42), 88% perceived a benefit of the service on their neonatal experience. Families rated a positive impact of the service on anxiety, sleep, family involvement and relationships with staff. Qualitative responses indicated enhanced emotional closeness, increased involvement in care and a positive effect on breastmilk expression. Seventy-seven post-implementation staff surveys were also collected. Staff rated the service as easy to use, with minimal impact on workload. Seventy-one percent (n=55) felt the service had a positive impact on relationships with families. Staff identified the need to manage parental expectations in relation to the number of videos that could be sent. CONCLUSIONS: Asynchronous video messaging improves parental experience, emotional closeness to their baby and builds supportive relationships between families and staff. Asynchronous video supports models of family integrated care and can mitigate family separation, which could be particularly relevant during the COVID-19 pandemic.

The Complexity of the NICU-to-Home Experience for Adolescent Mothers: Meleis' Transitions Theory Applied.

Quality care for individuals and families during periods of transition is one of the major issues facing health care systems and providers today. The transition-home from the neonatal intensive care unit (NICU) as experienced by adolescent mothers is poorly understood-placing young mothers and their infants at risk of poor outcomes following NICU discharge. Meleis' Transitions Theory offers a unique theoretical perspective for understanding this transition experience and also serves to highlight the complexity of the NICU-to-home transition for this population of young mothers that is not currently elucidated in the literature.

Visitation restrictions: is it right and how do we support families in the NICU during COVID-19?

Although the COVID-19 pandemic has largely not clinically affected infants in neonatal intensive care units around the globe, it has affected how care is provided. Most hospitals, including their NICUs, have significantly reduced parental and family visitation privileges. From an ethical perspective, this restriction of parental visitation in settings where infectious risk is difficult to understand. No matter what the right thing to do is, NICUs are currently having to support families of their patients via different mechanisms. In this perspective, we discuss ways NICUs can support parents and families when they are home and when they are in the NICU as well as provide infants the support needed when family members are not able to visit.

Implementing NIDCAP training in a low-middle-income country: Comparing nurses and physicians' attitudes.

BACKGROUND: The Newborn Individualized Developmental Care and Assessment Program (NIDCAP) provides developmentally supportive environment for preterm infants and their families. Few studies evaluated staff perceptions about NIDCAP implementation and its effect on infant and parents and working conditions. AIMS: To assess the perception and experience of NICU staff during the NIDCAP implementation. STUDY DESIGN: Cross-sectional anonymous online survey. SUBJECTS: 57 NICU staff (29 nurses and 28 doctors) who were present at least one year prior to and during the implementation of NIDCAP training in a tertiary care center. OUTCOME MEASURES: A standard questionnaire addressing attitude, perceived behavioral control, subjective norm, intention, behavior and NIDCAP impact related to NICU conditions was used after initiating developmental care activities and NIDCAP training in the unit from June 2014 to May 2018. RESULTS: Forty-six doctors and nurses filled the questionnaire; they scored ≥3 out of 5 on all the questionnaire items. Nurses scored significantly higher than doctors (mean 4.00 ± 036) versus (3.57 ± 0.30) (p < 0.001) on the overall NIDCAP score. Specifically, nurses scores were significantly higher for attitude (p < 0.001), perceived behavioral control (p = 0.029); subjective norm (p = 0.011), intention (p = 0.024) and behavior (p < 0.001) questions. CONCLUSION: The implementation of NIDCAP in a low-middle income country was perceived as a positive experience for both nurses and doctors: It was thought to have improved infant care and wellbeing as well as the staff relationship with parents, however working conditions remained a challenge. More studies are needed to address areas of improvement for implementation.

Helping Parents Cope in the NICU.

Parenting in the NICU is an intense journey. Parents struggle to build intimacy with their child amid complex emotions and medical uncertainties. They need to rapidly adapt their vision of parenthood to the realities of intensive care. The psychological impact of this journey can have important effects on their psychological health. For parents of sick older children, "good parent" beliefs have been shown to foster positive growth. This concept is also essential for parents of infants in the NICU, although their path is complex.We write as clinicians who were also families in the NICU. We suggest parents need to hear and internalize 3 important messages that overlap but are each important: you are a parent, you are not a bad parent, and you are a good parent. We offer practical suggestions to NICU clinicians that we believe will help NICU parents cope while their infant is in the NICU and afterward.

NICU Maternal-Infant Bonding: Virtual Visitation as a Bonding Enhancement Tool.

The admission of an infant to the neonatal intensive care unit (NICU) presents specialized barriers to the maternal-infant bonding (MIB) process. Virtual visitation (VV) provides a mother with the opportunity to have continual access to her hospitalized infant via a one-way live Web camera. While increasingly used in the NICU, VV remains a novel concept. The objective of this study was to introduce a conceptual model that incorporates the use of VV into the NICU MIB process. Adapted from the Model of Mother-Infant Bonding After Antenatal HIV Diagnosis, a newly developed model of MIB using VV as a bonding enhancement tool is offered. A Model of NICU Maternal-Infant Bonding Incorporating Virtual Visitation presents the NICU bonding process in a chronological manner, with 5 primary propositions and an explanation of their related themes. Virtual visitation is introduced into the bonding process and is shown to act as a moderated variable. A Model of NICU Maternal-Infant Bonding Incorporating Virtual Visitation introduces VV as a tool to enhance the MIB process that occurs in the NICU. The model provides the basis for the development of a research program to examine the multiple potential effects of VV in the NICU.

Parents as carers on a neonatal unit: Qualitative study of parental and staff perceptions in a low-income setting.

Aim To determine parents' experiences on a neonatal unit in a low-income country, how they and staff perceive the role of parents and if parents' role as primary carers could be extended. BACKGROUND: A busy, rural district hospital in Rwanda. Rwandan neonatal mortality is falling, but achieving Sustainable Development Goal target is hampered by trained staff shortage. METHODS: Qualitative thematic content analysis of semi-structured interviews with 12 parents and 16 staff. RESULTS: Parental concerns were around their baby's survival, stress and discharge. They were satisfied with their baby's care but feared their baby may die. Mothers described stress from remaining in hospital throughout baby's stay, providing all non-technical care including tube or breast feeds day and night, followed by kangaroo mother care until discharge. They expressed loneliness from lack of visitors, difficulty finding food and somewhere to sleep, financial worries, concern about family at home, and were desperate to be discharged. Staff focused on shortage of nurses limiting technical care, ability to educate parents and provide follow-up. Neither groups thought parents' role could be extended. CONCLUSION: Staff, including senior management, were mainly focused on increasing nursing numbers. Parents' concerns were psychosocial and about coping emotionally with their baby's care and practical concerns about inpatient facilities, particularly lack of food and accommodation and absence from home. Staff preoccupation with nurse numbers made them concentrate on medical care, but parental issues identified are more likely to be provided by experienced mothers, allied health professionals, mothers' groups or community health workers.

Experiences of the mothers of infants hospitalized in the neonatal intensive care unit (NICU).

BACKGROUND: The mother-newborn relationship is more important in neonates hospitalized in the NICU than in healthy neonates. This study was conducted to explore the experiences of the mothers of infants hospitalized in the NICU. MATERIALS AND METHODS: This qualitative study was done in 2016 by adopting a conventional content analysis approach. Thirty-five mothers in the NICUs, Imam Hossein Hospital and Fatemieh Hospital were selected. Their experiences were assessed using in-depth individual semi-structured interviews. Sampling was purposive and was continued until reaching data saturation. RESULTS: Two hundred and nine primary codes were extracted. After removing duplicates and overlaps, 95 primary codes were categorized in 8 subcategories, 2 accessory categories and 1 main category based on their appropriateness, agreement, and similarity. The accessory categories of "mothers' worries" and "mothers' hopes" were merged into a more general, abstract category named "dual feelings about the baby". CONCLUSIONS: The nurses' awareness of the mothers' experiences can help design interventions to promote the quality of care for mothers and infants in the critical period of the NICU admission.