Decision‐making around resuscitation of extremely preterm infants in the Philippines: A consensus guideline

While the vast majority of preterm births globally occur in low‐ and middle‐income countries, existing published guidelines relating to the decision‐making and resuscitation of extremely preterm infants (EPIs) largely focus on high‐income countries. In 2018–2019, a working group of the Philippine Society of Newborn Medicine aimed to develop the first national guideline relating to the care of EPIs. The working group reviewed data on the outcomes of EPIs in the Philippines, surveyed paediatricians and neonatologists in the Philippines about current practice and held a consensus workshop. This paper describes the guideline development process and presents a summary of the guidelines. The national guidelines endorse consistency in decision‐making. Health professionals should take into consideration the views and wishes of the infant's parents and the availability of resources to treat the newborn infant. Active management would be appropriate to provide for potentially viable preterm infants at moderate to high risk of poor outcomes, where parents have expressed their wish for this management (and where there are resources available to provide this treatment). For such infants, where parents have expressed their wish to withhold active management, palliative management would also be appropriate to provide. The guideline endorses a grey zone for neonatal resuscitation from approximately 24 to 28 weeks’ gestation in the Philippines, reflecting the context for resuscitation in low‐ and middle‐income countries. Disparities in resource availability are themselves an ethical concern for neonatologists and should be a stimulus for advocacy and improvements in health‐care delivery.     

Psychologisch-sozialmedizinische Versorgung in der Neonatologie

Approximately 8.8?% of all newborn infants are born before 37 weeks of gestational age and are defined as preterm infants. For preterm infants the length of the initial stay in the neonatal intensive care unit (NICU) can last from weeks to months. Nowadays, medical treatment is focused on the neurological development which is affected not only by the physiological extrauterine environment but also by separation of mother and child during NICU treatment. Therefore, new care concepts encompass the optimal medical care of the infant as well as the best support for the whole family. The parents become the primary caregivers of their infant and are responsible for the development from the very beginning. Moreover, they need consultation, training and individualized discharge planning. Characteristics of structure and process of psychological sociomedical care for families of premature and ill, mature newborn children are described by a complex care model.     

Opportunities and difficulties for counseling at the margins of viability

At the margins of viability, the interaction between physicians and families presents challenges but also opportunities for success. The counseling team often focuses on data: morbidity and mortality statistics and the course of a typical infant in the neonatal intensive care unit. Data that are generated on the population level can be difficult to align with the multiple facets of an individual infant's trajectory. It is also information that can be difficult to present because of framing biases and the complexities of intuiting statistical information on a personal level. Families also do not arrive as a blank slate but rather arrive with notions of prematurity generated from the culture they live in. Mothers and fathers often want to focus on hope, their changing role as parents, and in their desire to be a family. Multi-timepoint counseling provides the opportunity to address these goals and continue communication as the trajectories of infants, families and the counseling team change.     

Physiologic Sequelae of Prematurity: The nurse practitioner''s role part VI. Feeding difficulties and growth Failure (prevention, intervention, parent teaching, and complications)

Feeding difficulties and growth failure are common problems of the premature infant who has been in a neonatal intensive care unit. This article, the sixth in a series, discusses the prevention, intervention, and parent teaching necessary to assist parents in coping and dealing with feeding problems in their premature infant.     

Withholding and withdrawing neonatal intensive care

Decisions relating to the withholding, limiting or withdrawal of intensive care support are a necessary part of a neonatal unit's practice.Health professionals and parents have a duty to act in partnership in the infant's best interests. Clinical guidelines and the law help define circumstances when it is ethically and legally acceptable to consider withholding or withdrawing treatment. Good practice dictates that a consensus should be achieved both between unit staff themselves and with parents. Senior staff involvement and effective, timely communication is essential to achieve this and only rarely will the law need to be involved. An honest, consistent approach is essential and discussions must be carefully documented. Parents need to be provided with sufficient information in a way that they can understand and assimilate, and most parents wish to be involved in both the decision-making and the dying process; ways of achieving this are discussed.Follow-up is important. Primary healthcare professionals need to be involved early in the process and contact should be established by someone from the unit well known to the parents within 2 months of the death of their child.     

Personalized support of parents of extremely preterm infants before,during and after birth

The emotional turmoil associated with extremely preterm birth is inescapable parents. How each parent handles the unexpected, makes sense of the unknown and learns to parent their child is uniquely personal. A rigid standardized approach to support families through their journey before and during neonatal intensive care disregards this individuality. This article reviews general concepts and practices that can be learned and applied by clinicians to promote resiliency and help parents cope adaptively. This review will describe how to personalize parenting support during the antenatal consultation and hospitalization for parents of extremely premature infants. To facilitate this, mindsets and care delivery models need to shift from inflexible standardized protocols to flexible guidelines that enable personalized communications, support structures and care delivery models tailored to each person's characteristics, preferences, and values.     

Family-centred and developmental care on the neonatal unit

Admission of a sick or preterm newborn to the neonatal unit can be an extremely stressful experience for both the infant and family. Parent-infant interaction may be considerably hampered. This interaction is, however recognized to be vital and confers a range of benefits to parents and babies and contributes to the physical, emotional and social well-being of both. Developmental care consists of a large range of medical and nursing interventions that help to reduce the stress of preterm infants in neonatal units and allow optimal neurobehavioral development of the infant. Family-Centred and Family Integrated Care practices promote parental participation in the care of their infant on NICU whilst recognizing them as integral members of the care team and primary decision-makers for their infant. Established historical practices and beliefs can present as challenges to the implementation and sustenance of family-centred and developmental care. We review these challenges in order to develop strategies to successfully implement this important aspect of neonatal care.     

Counselling and management for anticipated extremely preterm birth

Extremely preterm birth (birth between 22^0/7 and 25^6/7 weeks’ gestational age [GA]) often requires parents to make complex choices about the care of their infant. Health professionals have a significant role in providing information, guidance and support. Parents facing the birth of an extremely preterm infant should have the chance to meet with both obstetrical and paediatric/neonatal care providers to receive accurate information about their infant’s prognosis, provided with clarity and compassion. Decision making between parents and health professionals should be an informed and shared process, with documentation of all management decisions. Consultation with and transfer to tertiary perinatal centres are important for the care of both mother and fetus. As the survival of infants born before or at 22 completed weeks’ GA remains uncommon, a noninterventional approach is recommended, whereas at 23, 24 and 25 weeks’ GA, counselling about outcomes and decision making should be individualized for each infant and family, using factors which influence prognosis. All extremely preterm infants who are not resuscitated, or for whom resuscitation is not successful, must receive compassionate palliative care.     

Supporting caregivers of children born prematurely in the development of language: A scoping review

BackgroundInfants born prematurely can display impairments that negatively impact the early years of their development. Compared to their peers born at term, preterm children have higher risks of cerebral palsy, sensory deficits, learning disabilities, cognitive and language deficits, as well as difficulties related to attention and behaviour. Following discharge, parents of preterm children are often supported through neonatal follow-up programs or by community health care practitioners. Through assessment and consultation, professionals foster parental resilience by teaching them about their child’s development. Research shows a large volume of literature on improving outcomes for preterm infants, but less attention has been given to the impact and potential importance of education of parents regarding the care they provide from the home.ObjectiveA scoping review was completed to determine the best practices for early intervention in premature children regarding the development of language skills during the preschool years.MethodsThe review followed the guidelines for the Preferred Reporting Items for Systematic reviews and Meta-Analyses (PRISMA).ResultsFour general themes emerged from the review and included the importance of providing (1) parental training in the care of an infant born prematurely during neonatal intensive care unit stay; (2) education on the development of language and the importance of parental responsiveness; (3) provision of activities to support child language learning; and (4) overall and ongoing monitoring and support by qualified health professionals.ConclusionsThe conclusions drawn will provide guidance to health care professionals regarding the education of parents on best practices for stimulating language development in their child.     

Consent for clinical research in the neonatal intensive care unit: a retrospective survey and a prospective study

BACKGROUND: Recruitment into research studies in the neonatal intensive care unit has been problematic. Therefore suggestions have been made to take decision making about enrollment out of the hands of the parents. OBJECTIVE: To understand parental perceptions of the process of recruitment and enrollment for research in the neonatal intensive care unit. METHOD: A questionnaire was developed and used in both a retrospective survey and a prospective study of parents whose newborns were enrolled in trials in a neonatal intensive care unit. Closed ended and open ended questions were included, as well as demographic questions. RESULTS: The retrospective survey had a 79% response rate (29 of 38). Overall, 90% of parents felt that they had made informed decisions, and 93% were against the option that a doctor decide if the newborn should be enrolled into a study, rather than the parent. Although some parents (38%) found that recruitment did add "stress to an already stressful situation", 90% felt that they had made informed decisions and understood the elements of the study. Most parents had been requested to enroll their newborn into more than one trial, and, on average, they thought that they would be comfortable with enrollment into two studies (range 0-6). When asked how the process could be improved, parents suggested that information be made available before delivery. The responses of parents in the prospective study were mostly consistent with those from the retrospective survey. CONCLUSIONS: Overall the parents did not support the suggestion that decision making about enrollment be taken away from parents and put into the hands of doctors. The healthcare team should support parents in their role of decision maker, enhance availability of the research staff, and provide more information about the research.     

Parent Support of Feeding in the Neonatal Intensive Care Unit

To examine the perceptions of parent education and support of feeding in the neonatal intensive care unit (NICU), a survey was conducted with occupational therapists (OTs) and parents of infants in the NICU. Data were collected from 32 OTs and 11 parents. The results showed that OTs used a variety of teaching methods to convey information about feeding to parents, that parents felt “very confident” and OTs felt “confident” in the parents' understanding of the material, and that different types of equipment and follow-up services were offered to parents following their child's discharge from the NICU.     

Closeness and separation in neonatal intensive care

In this paper, we highlight the need for acknowledging the importance and impact of both physical and emotional closeness between the preterm infant and parent in the neonatal intensive care unit. Physical closeness refers to being spatially close and emotional closeness to parental feelings of being emotionally connected to the infant (experiencing feelings of love, warmth and affection). Through consideration of the literature in this area, we outline some of the reasons why physical closeness and emotional closeness are crucial to the physical, emotional and social well-being of both the infant and the parent. These include positive effects on infant brain development, parent psychological well-being and on the parent-infant relationship. The influence of the neonatal unit environment and culture on physical and emotional closeness is also discussed. Conclusions: Culturally sensitive care practices, procedures and the physical environment need to be considered to facilitate parent-infant closeness, such as through early and prolonged skin-to-skin contact, family-centred care, increased visiting hours, family rooms and optimization of the space on the units. Further research is required to explore factors that facilitate both physical and emotional closeness to ensure that parent-infant closeness is a priority within neonatal care.     

A comparison of parent and staff perceptions of setting-specific and everyday stressors encountered by parents with very preterm infants experiencing neonatal intensive care

Background

Stress responses among parents of premature infants experiencing the neonatal intensive care unit (NICU) environment are widely reported. However, less is known about how nurses perceive parents' experiences or how stressors relating to demands on family finances and practical challenges associated with infant hospitalization contribute to parental stress levels in the NICU.

Objective

1) To compare parent and staff perceptions of the stressors facing parents experiencing neonatal intensive care; and 2) to develop a scale suitable for identifying stressors outside the NICU setting.

Methods

At infant 34 weeks, parents (n = 21) of very preterm infants (≤ 32 weeks GA) and NICU nurses (n = 23) completed the Parental Stressor Scale: NICU (PSS: NICU) and a custom-made External Stressor Scale (ESS: NICU).

Results

Nurses perceived parents to experience higher stress in the NICU than parents themselves (ps < 0.00001), with parents reporting low-to-moderate stress and staff rating parental stress as moderate-to-high. Parents reported slightly lower levels of stress on the ESS: NICU, with nurses again overestimating the level of parental stress (ps < 0.00001). Consideration of the extent of nurses' medical experience did not alter results. The ESS: NICU showed good internal reliability, with PCAs revealing all items to load onto a single component. Additional analyses demonstrated divergent validity, with no relation evident with stress responses on the PSS: NICU.

Conclusions

Periodic reassessments of staff and parent perceptions should be encouraged along with research dedicated to a fuller understanding of the range of stressors facing parents experiencing neonatal intensive care in attempts to reduce stress levels and aid integration into the unit.     

Neonatal intensive care and late preterm infants: Health and family functioning at three years

Background

Late preterm infants (LPIs), born at 34 + 0 to 36 + 6 weeks of gestation contribute a significant proportion of all neonatal intensive care (NIC) admissions and are regarded as being at risk of adverse outcomes compared to term-born infants.

Aim

To explore the health outcomes and family functioning of LPIs who required neonatal intensive care, at three years of age.

Study design and subjects

This cohort study included 225 children born late preterm, between 1 January and 31 December 2006 in Northern Ireland. Children admitted for NIC (study group, n = 103) were compared with children who did not require NIC or who required special care only for up to three days (comparison group, n = 122).

Outcome measures

Health outcomes were measured using the Health Status Questionnaire, health service usage by parent report and family functioning using the PedsQL™ Family Impact Module.

Results

LPIs who required NIC revealed similar health outcomes at three years in comparison to those who did not. Despite this, more parents of LPIs who required NIC reported visiting their GP and medical specialists during their child's third year of life. Differences in family functioning were also observed with mothers of LPIs who required NIC reporting, significantly lower levels of social and physical functioning, increased difficulties with communication and increased levels of worry.

Conclusions

LPIs were observed to have similar health outcomes at three years of age regardless of NIC requirement. The increase in GP and medical specialist visits and family functioning difficulties observed among those infants who required NIC merits further investigation.     

The effectiveness of video interaction guidance in parents of premature infants: A multicenter randomised controlled trial

ABSTRACT: BACKGROUND: Studies have consistently found a high incidence of neonatal medical problems, premature births and low birth weights in abused and neglected children. One of the explanations proposed for the relation between neonatal problems and adverse parenting is a possible delay or disturbance in the bonding process between the parent and infant. This hypothesis suggests that due to neonatal problems, the development of an affectionate bond between the parent and the infant is impeded. The disruption of an optimal parent-infant bonding -on its turn- may predispose to distorted parent-infant interactions and thus facilitate abusive or neglectful behaviours. Video Interaction Guidance (VIG) is expected to promote the bond between parents and newborns and is expected to diminish non-optimal parenting behaviour. Methods/design This study is a multi-center randomised controlled trial to evaluate the effectiveness of Video Interaction Guidance in parents of premature infants. In this study 210 newborn infants with their parents will be included: n = 70 healthy term infants (>37 weeks GA), n = 70 moderate term infants (32-37 weeks GA) which are recruited from maternity wards of 6 general hospitals and n = 70 extremely preterm infants or very low birth weight infants (<32 weeks GA) recruited by the NICU of 2 specialized hospitals The participating families will be divided into 3 groups: a reference group (i.e. full term infants and their parents, receiving care as usual), a control group (i.e. premature infants and their parents, receiving care as usual) and an intervention group (i.e. premature infants and their parents, receiving VIG). The data will be collected during the first six months after birth using observations of parent-infant interactions, questionnaires and semi-structured interviews. Primary outcomes are the quality of parental bonding and parent-infant interactive behaviour. Parental secondary outcomes are (posttraumatic) stress symptoms, depression, anxiety and feelings of anger and hostility. Infant secondary outcomes are behavioral aspects such as crying, eating, and sleeping. DISCUSSION: This is the first prospective study to empirically evaluate the effect of VIG in parents of premature infants. Family recruitment is expected to be completed in January 2012. First results should be available by 2012. Trail registration number NTR3423.     

Going home: what NICU nurses need to know about home care

Pediatric home health care enables patients to be at home with their families in settings that bring them joy, comfort, and the security we all feel when we are at home. There is also a feeling, no matter how small, that the parents have some control over what is happening to their child. Infants with multiple needs require in-depth discharge planning. There are the physical and health concerns of the preterm infant and the potential complications that he could still develop. Parent teaching is vital for the successful transition from hopital to home. When the neonatal discharge nurse is aware of what difficulties the parents and the patient might face at home, her teaching can be tailored to meer the specific needs of these vulnerable, complicated infants. This article discusses the discharge planning process, which begins upon admission to the neonatal intensive care unit, as well as common problems encountered by many premature infants discharged home.     

Connecting to Early Intervention Services After Neonatal Intensive Care Unit Discharge in a Medicaid Sample

ObjectiveTo describe caregiver perspectives regarding connecting to early intervention (EI) services after neonatal intensive care unit discharge in a Medicaid sample.MethodsOpen-ended semistructured interviews and focus groups were conducted with English- or Spanish-speaking families enrolled in Medicaid in an urban high-risk infant follow-up clinic at a safety-net center, which serves preterm and high-risk term infants. We generated salient themes using inductive-deductive thematic analysis.ResultsThirty-two participants completed the study. The infant's median (interquartile range) birth weight was 1365 (969, 2800) grams; 50% were Hispanic; 31% reported living in a neighborhood with fourth quartile economic hardship. Eighty-one percent were classified as having chronic complex disease per the Pediatric Medical Complexity Algorithm and 63% had a diagnosis of developmental delay. A conceptual model was constructed and the analysis revealed major themes describing families’ challenges and ideas to facilitate connection to EI. We identified subthemes related to the person in environment: health care environment/support and socio-economic resources, parent perspectives and built environment; provider level factors such as appointment scheduling, staff limitations, and parent suggestions to improve health care and service navigation, which included improved information sharing, the importance of patient advocates, video resources, early referrals to EI facilitated by the discharging hospital and system workarounds.ConclusionsThe results from this study may provide a granular roadmap for providers to help facilitate referrals to EI services. We identified several ideas such as using advocates and providing transitional resources, including online media, that might improve the connection to EI services.     

Withholding treatment, withdrawing treatment, and palliative care in the neonatal intensive care unit

Advances in pharmacology and technology have sharply reduced mortality of extremely preterm infants at the expense of an increasing number of survivors with handicaps and disabilities. The EURONIC study among neonatal intensive care units across Europe demonstrates that treatment of infants born at the limits of viability raises challenging ethical, moral, legal, and emotional dilemmas among neonatologists, nurses, and parents alike. When is it wise to withhold or withdraw intensive care and, if so, what are the needs of the nonviable or dying infant, family, and neonatal staff to provide a humane and compassionate death? This process begins with a thorough determination of diagnosis and prognosis, followed by decision making on the basis of futility of treatment or quality-of-life issues, and counseling of parents. Withholding or withdrawing of intensive care should be synonymous with palliative care. Perinatal audit and after-care of the family complete the process. The Dutch viewpoint and practice guidelines on withholding and withdrawing of neonatal intensive care are presented.     

Preterm infants who are prone to distress: differential effects of parenting on 36-month behavioral and cognitive outcomes

Background: The differential susceptibility (DS) model suggests that temperamentally prone‐to‐distress infants may exhibit adverse outcomes in negative environments but optimal outcomes in positive environments. This study explored temperament, parenting, and 36‐month cognition and behavior in preterm infants using the DS model. We hypothesized that temperamentally prone to distress preterm infants would exhibit more optimal cognition and fewer behavior problems when early parenting was positive; and less optimal cognition and more behavior problems when early parenting was less positive. Methods: Participants included 109 preterm infants (gestation <37 weeks) and their mothers. We assessed neonatal risk and basal vagal tone in the neonatal intensive care unit; infant temperament and parenting interactions at 9 months post‐term; and child behavior and cognitive skills at 36 months post‐term. Hierarchical regression analyses tested study hypotheses. Results: Temperamentally prone‐to‐distress infants exhibited more externalizing problems if they experienced more critical parenting at 9 months (β = ?.20, p < 0.05) but fewer externalizing problems with more positive parenting. Similarly, variations in maternal positive affect (β = .25, p < .01) and intrusive behaviors (β = .23, p < .05) at 9 months predicted 36‐month cognition at high but not at low levels of infant temperamental distress. Higher basal vagal tone predicted fewer externalizing problems (β = ?.19, p < .05). Conclusions: Early parenting behaviors relate to later behavior and development in preterm infants who are temperamentally prone to distress, and neonatal basal vagal tone predicts subsequent externalizing behaviors. These findings suggest that both biological reactivity and quality of caregiving are important predictors for later outcomes in preterm infants and may be considered as foci for developmental surveillance and interventions.