NICU Language, Everyday Ethics, and Giving Better News: Optimizing Discussions about Disability with Families.

The Neonatal Intensive Care Unit (NICU) has a language and culture that is its own. For professionals, it is a place of intense and constant attention to microdetails and cautious optimism. For parents, it is a foreign place with a new and unique language and culture. It is also the setting in which they are introduced to their child and parenthood for this child. This combination has been referred to as an emotional cauldron. The neonatal ethics literature mainly examines complex ethical dilemmas about withholding/drawing life sustaining interventions for fragile children. Rarely are everyday ethics or mundane ethics discussed. Microethics describe the mundane, discrete moments that occur between patients/families and clinicians. A key piece of these microethics is the language used to discuss patient care. Perception of prognoses, particularly around long-term neurodevelopmental outcome, is shaped with the language used. Despite this, clinicians in the NICU often have no specific training in the long-term neurodevelopment outcomes that they discuss. This paper focuses on the microethics of language used to discuss long-term neurodevelopmental outcomes, the developmental neuroscience behind language processing, and offers recommendations for more accurate and improved communication around long-term outcomes with families with critically ill neonates.

Prenatal Workshops and Support Groups for Prospective Parents Whose Children Will Need Neonatal Care at Birth: A Feasibility and Pilot Study.

Introduction: Support groups in neonatal intensive care units (NICUs) are beneficial to parents. The usefulness of prenatal support groups for prospective parents who will have a newborn requiring admission to the NICU has never been investigated. Methods: We assessed the needs of NICU parents regarding topics they would have wished to discuss prenatally and developed the content of a prenatal support workshop. A standardized survey prospectively evaluated the perspectives of pregnant women admitted to a high-risk pregnancy unit who participated in the resulting workshops. Results: During needs assessment, 295 parents invoked themes they would have wished to discuss antenatally: parental guilt, future parental role, normalizing their experience/emotions, coping with many losses, adapting to their new reality, control and trust, information about the NICU, technology around the baby, common neonatal interventions, the NICU clinical team, and the role of parents in the team. These findings were used to develop the workshop, including a moderator checklist and a visual presentation. Practical aspects of the meetings were tested/finalized during a pre-pilot phase. Among 21 pregnant women who answered the survey (average gestational age 29.3 weeks), all agreed that the workshop was useful, that it made them feel less lonely (95%), that exchanges with other women were beneficial (95%) and gave them a certain amount of control over their situation (89%). All answers to open-ended questions were positive. Conclusion: Prenatal educational/support workshops provide a unique and useful means to support future NICU parents. Future investigations will explore whether these prenatal interventions improve clinical outcomes.

When the Unknown Is Unknowable: Confronting Diagnostic Uncertainty.

The neonatology literature often refers to medical uncertainty and specifically the challenges of predicting morbidity for extremely premature infants, who can have widely varying outcomes. Less has been written about situations in which diagnoses are simply unknown or unattainable. This case highlights the importance of communication amidst uncertainty from a lack of knowledge about aspects of a patient's condition. Using epidemiologic and clinical reasoning, the authors challenge the assumption that diagnostic uncertainty must necessarily portend prognostic uncertainty. When physicians' quest for a diagnosis becomes burdensome and detrimental to the infant's quality of life, this should be abandoned and replaced by focusing on prognosis. The authors focus on the shift of the physician's role toward one of support, assisting the family in ascribing meaning to the dying experience. By focusing on prognosis and support, communication can proceed with more clarity, understanding, and empathy.

Butterflies and Ribbons: Supporting Families Experiencing Perinatal Loss in Multiple Gestation.

Introduction: In neonatology, multiple pregnancies are common. Unfortunately, it is not rare for one baby to die. Communication with parents in these circumstances has been demonstrated to be sub-optimal. Methods: Two educational programs were evaluated with pre- and post-course surveys, questionnaires administered to participants, and audits. Results: In the online Butterfly project (UK; n = 734 participants), all participants reported that the training exceeded or met their expectations, 97% reported they learned new skills, and 48% had already applied them. Participants expressed gratitude in their open-ended answers: "I feel a lot more confident in supporting parents in this situation". In the Ribbon project (workshop for neonatal clinicians, Quebec; n = 242), 97% were satisfied with the training and reported feeling more comfortable caring for bereaved parents. Knowledge improved pre-post training. Audits revealed that 100% of cases were identified on the incubator and the baby's/babies' admission card, all changed rooms after the death of their co-twin/triplet, and all had the name of their co-twin/triplet on the discharge summary. All clinicians (55) knew what the ribbon symbol meant when asked during surprise audits at the bedside. Conclusion: Different educational strategies to optimize communication with families after the perinatal loss of a co-twin are appreciated and have a positive impact.

Parental perspectives about information and deferred versus two-stage consent in studies of neonatal asphyxia.

OBJECTIVE: The ALBINO Trial (NCT03162653) investigates effects of very early postnatal allopurinol on neurocognitive outcome following perinatal asphyxia where prenatal informed consent (IC) is impossible. Ethically and legally, waiver of consent and/or deferred consent (DC) is acceptable in such an emergency. Short oral/two-step consent (SOC, brief information and oral consent followed by IC) has recently been investigated. METHODS: Mixed-methods analysis of parental opinions on DC versus SOC in the context of neonatal asphyxia in a survey at two German centres. Prospective parents (ProP), parents of healthy newborns (PNeo) and parents of asphyxiated infants (PAx) born between 2006 and 2016 were invited. RESULTS: 108 of 422 parents participated (ProP:43; PNeo:35; PAx:30). Most parents trusted physicians, wanted preinterventional information and agreed that in emergencies interventions should begin immediately. Intergroup and intragroup variability existed for questions about DC and SOC. In the ALBINO Trial situation, 55% preferred SOC, and 26% reported DC without information might adversely affect their trust. Only 3% reported to potentially take legal action after DC. PAx were significantly more likely to support DC. PAx more frequently expressed positive emotions and appreciation for neonatal research. In open-ended questions, parents gave many constructive recommendations. CONCLUSION: In this survey, parents expressed diverse opinions on consent, but the majority preferred SOC over DC. Parents who had experienced emergency admission of their asphyxiated neonates were more trusting. Obtaining parental perspectives is essential when designing studies, while being cognisant that these groups of parents may not represent the opinion of all parents.

A Narrative Review of the Rationale for Conducting Neonatal Emergency Studies with a Waived or Deferred Consent Approach.

Emergency research studies are high-stakes studies that are usually performed on the sickest patients, where many patients or guardians have no opportunity to provide full informed consent prior to participation. Many emergency studies self-select healthier patients who can be informed ahead of time about the study process. Unfortunately, results from such participants may not be informative for the future care of sicker patients. This inevitably creates waste and perpetuates uninformed care and continued harm to future patients. The waiver or deferred consent process is an alternative model that may be used to enroll sick patients who are unable to give prospective consent to participate in a study. However, this process generates vastly different stakeholder views which have the potential to create irreversible impediments to research and knowledge. In studies involving newborn infants, consent must be sought from a parent or guardian, and this adds another layer of complexity to already fraught situations if the infant is very sick. In this manuscript, we discuss reasons why consent waiver or deferred consent processes are vital for some types of neonatal research, especially those occurring at and around the time of birth. We provide a framework for conducting neonatal emergency research under consent waiver that will ensure the patient's best interests without compromising ethical, beneficial, and informative knowledge acquisition to improve the future care of sick newborn infants.

Redefining Neurodevelopmental Impairment: Perspectives of Very Preterm Birth Stakeholders.

Children born very preterm are at risk of severe neurodevelopmental impairment, a composite endpoint that includes cerebral palsy, developmental delay, and hearing and visual impairment defined by medical professionals. We aimed to describe preterm birth stakeholders' perspectives on this classification. Ten clinical scenarios describing 18-month-old children with different components of severe neurodevelopmental impairment and one scenario of a typically developing child (control) were distributed to parents and stakeholders using a snowball sampling technique. For each scenario, participants rated health on a scale from 0 to 10 and whether the scenario represented a severe condition. Results were analyzed descriptively and mean differences from the control scenario were compared using a linear mixed-effects model. Stakeholders (number = 827) completed 4553 scenarios. Median health scores for each scenario varied from 6 to 10. The rating for the cerebral palsy and language delay scenario was significantly lower (mean difference -4.3; 95% confidence interval: -4.4, -4.1) than the control. The proportion of respondents rating a scenario as "severe" ranged from 5% for cognitive delay to 55% for cerebral palsy and language delay. Most participants disagreed with the rating used in research to describe severe neurodevelopmental impairment in preterm children. The term should be redefined to align with stakeholder perceptions.

Survival and Long-Term Outcomes of Children Who Survived after End-of-Life Decisions in a Neonatal Intensive Care Unit.

OBJECTIVE: To investigate long-term outcomes of infants who survive despite life-and-death discussions with families and a decision to withdraw or withhold life-sustaining interventions (WWLST) in one neonatal intensive care unit. STUDY DESIGN: Medical records for neonatal intensive care unit admissions from 2012 to 2017 were reviewed for presence of WWLST discussions or decisions, as well as the 2-year outcome of all children who survived. WWLST discussions were prospectively recorded in a specific book; follow-up to age 2 years was determined by retrospective chart review. RESULTS: WWLST discussions occurred for 266 of 5251 infants (5%): 151 (57%) were born at term and 115 (43%) were born preterm. Among these discussions, 164 led to a WWLST decision (62%) and 130 were followed by the infant's death (79%). Of the 34 children (21%) surviving to discharge after WWLST decisions, 10 (29%) died before 2 years of age and 11 (32%) required frequent medical follow-up. Major functional limitations were common among survivors, but 8 were classified as functionally normal or with mild-to-moderate functional limitations. CONCLUSIONS: When a WWLST decision was made in our cohort, 21% of the infants survived to discharge. By 2 years of age, the majority of these infants had died or had major functional limitations. This highlights the uncertainty of WWLST decisions during neonatal intensive care and the importance of ensuring that parents are informed of all possibilities. Additional studies including longer-term follow-up and ascertaining the family's views will be important.

Gratitude, fragility and strength: Perspectives of adults born preterm about prematurity.

AIM: The aim of the study was to explore how young adults thought that being born preterm had affected their lives. METHODS: Adult participants of a research cohort were questioned about their perspectives. Answers were analysed using mixed methods. RESULTS: Forty-five participants evaluated their health at median score of 8/10. When asked about the meaning of being born preterm, 65% had positive self-centred answers, invoking two main themes: being stronger/'a fighter'/more resilient and being a survivor/chosen; 42% also reported negative themes, such as having health problems and a difficult start. All heard about their prematurity from their parents, 55% with positive child-centred or healthcare system-centred themes, 19% with neutral themes; 35% also heard negative parent-centred themes (tragic experience, guilt, mother's health). When asked which words were associated with prematurity, participants mainly chose positive words for themselves and their family, but more negative words for how the media and society depicted prematurity. Answers were not correlated with adverse objective health measures. CONCLUSION: Participants evaluated their health in a balanced fashion. Preterm-born adults often feel that they have experienced positive transformations as a result of their traumatic start. They often have feelings of gratitude and strength, independent of health problems.

Fragility and resilience: parental and family perspectives on the impacts of extreme prematurity.

OBJECTIVES: Extremely preterm babies have a significant risk of neurodevelopmental impairment (NDI). There has been little investigation regarding the impact of prematurity on families. The objective of this study was to explore parental perspectives regarding the impact of prematurity on themselves/their family. METHODS: Over 1 year, parents of children born <29 weeks' gestational age (GA) who were between 18 months old and 7 years old and came for their follow-up visit were invited to participate. They were asked to categorise the impacts of prematurity on their life and their family as positive, negative or both and to describe those impacts in their own words. Thematic analysis was performed by a multidisciplinary group, including parents. Logistic regression was performed to compare parental responses. RESULTS: Among parents (n=248, 98% participation rate), most (74%) reported that their child's prematurity had both positive and negative impacts on their life or their family's life, while 18% reported only positive impacts and 8% only negative impacts. These proportions were not correlated with GA, brain injury, nor level of NDI. The positive impacts reported included: an improved outlook on life, such as gratitude and perspective (48%), stronger family relationships (31%) and the gift of the child (28%). The negative themes were stress and fear (42%), loss of equilibrium due to medical fragility (35%) and concerns about developmental outcomes including the child's future (18%). CONCLUSION: Parents report both positive and negative impacts after an extremely preterm birth, independent of disability. These balanced perspectives should be included in neonatal research, clinical care and provider education.

Antenatal consultation and deliberation: adapting to parental preferences.

OBJECTIVE: To analyze and compare perspectives on antenatal consultation and decision-making from participants with varying degrees of prematurity experience and clinician-experts. STUDY DESIGN: Open-ended interviews structured around topics previously identified by recognized clinician-experts were conducted with participants having different levels of prematurity experience. Analysis used mixed methods (thematic and mental models analysis). Secondary sub-group comparisons were performed, based on degree of experience. RESULTS: Non-clinician participants' (n = 80) perspectives differed regarding: amount and content of information desired, decision-making strategies, and who - parent or clinician - should direct consultations. Most wanted to retain decisional authority, all recognized their emotional limitations and many advocated for deliberation support. Participants worried parents' would regret choosing palliative care contrary to clinicians. Bereaved parents often saw issues differently. CONCLUSIONS: Parents approach risk and decision-making for extremely premature infants in a personal fashion. They need personalized support tailored to their unique circumstances, decision-making preferences, and emotions.

Pulmonary important outcomes after extremely preterm birth: Parental perspectives.

AIM: To describe pulmonary important outcomes (PIO) reported by parents of children born extremely preterm. METHODS: Over 1-year, all parents of children aged 18 months-7-years born <29 weeks' GA were asked regarding their perspectives. The proportion of parents who described PIO and the themes they invoked were examined. Results were analysed using mixed methods. RESULTS: Among parental responses (n = 285, 98% participation rate), 44% spoke about PIO, invoking 24 themes pertaining to NICU hospitalisation and/or long-term respiratory health. Some themes had an impact primarily on the child (e.g. exercise limitation), while the majority had an impact on the whole family (e.g. hospital readmissions). None mentioned oxygen at 36 weeks nor bronchopulmonary dysplasia (BPD). The proportion of responses invoking PIO were statistically similar between parents of children with and without BPD, born before or after 25 weeks or with birthweight < or ≥750 g. PIO were more likely to be mentioned in males and among those readmitted for respiratory problems. CONCLUSION: Parents describe many PIO, most related to the functional impact of lung disease on their child (and family), rather than the diagnosis of BPD itself. Most of these PIO are not primary outcomes in large neonatal trials nor collected in neonatal databases.

Care of suspected long bone fractures in the emergency department: Families' perspectives and priorities.

OBJECTIVE: Despite growing interests in patient-reported outcomes, youth and families are rarely involved in designing quality improvement measures. Few quality indicators exist for the care of children with injuries in the Emergency Department (ED) and extremity fractures are among the most common injuries in children. This study's aim was to identify both parents' and youth's perspectives about ED care in the context of a suspected long-bone fracture. METHODS: Youth (10-18 years old) and their parents were surveyed prospectively during their ED visit. Participants were asked: 1) to identify their main concerns, 2) to identify quality measures that were most important to them, and 3) to evaluate the ED care they received. Descriptive analyses present participants' responses. Continuous data was analyzed using a Student t-test and categorical data using a Chi-square test. RESULTS: Over 15 months, 350 families met eligibility criteria and were approached to participate, of which 300 participants consented and 249 surveys were completed (71% response rate): 148 parents and 101 youth (median age: 12) completed their respective surveys. Participants placed a high importance on several themes: pain management, short length of stay, and quality interactions with ED clinicians. Youth as a group prioritized their overall wellbeing and the ED environment (e.g., waiting room comfort, signage), while parents focused on accurate diagnoses and treatments. The following items were less prioritized: that radiology be close to the ED, to see the radiograph, to have access to a wheelchair, to know the identities of clinicians on the team, and to have access to entertainment. Parents and youth within the same family often did not share the same priorities. Ninety-two percent of parents reported their child's pain was treated, while 81% and 63% of youth reported their pain was treated sufficiently and quickly, respectively. CONCLUSIONS: Parents and youth can identify their priorities for ED care and should be engaged in efforts to improve and report on the quality of care in the ED. Youths' and parents' perspectives are complimentary and may not align, even within families. The priorities identified in this study can help inform quality improvement initiatives and personalized patient care.

Guilt and Regret Experienced by Parents of Children Born Extremely Preterm.

OBJECTIVES: To explore decisional regret of parents of babies born extremely preterm and analyze neonatal, pediatric, and parental factors associated with regret. STUDY DESIGN: Parents of infants born <29 weeks of gestational age, aged between 18 months and 7 years, attending neonatal follow-up were enrolled. Hospital records were reviewed to examine morbidities and conversations with parents about levels of care. Parents were asked the following question: "Knowing what you know now, is there anything you would have done differently?" Mixed methods were used to analyze responses. RESULTS: In total, 248 parents (98% participation) answered, and 54% reported they did not have regret. Of those who reported regret (n = 113), 3 themes were most frequently invoked: 35% experienced guilt, thinking they were responsible for the preterm birth; 28% experienced regret about self-care decisions; and 20% regretted decisions related to their parental role, generally wishing they knew sooner how to get involved. None reported regret about life-and-death decisions made at birth or in the neonatal intensive care unit. Impairment at follow-up, gestational age, and decisions about levels/reorientation of care were not associated with regret. More mothers reported feeling guilt about the preterm birth (compared with fathers); parents of children with severe lesions on ultrasonography of the head were less likely to report regret. CONCLUSIONS: Approximately one-half of the parents of infants born extremely preterm had regrets regarding their neonatal intensive care unit stay. Causes of regret and guilt should be addressed and minimized.

Parental perspectives of outcomes following very preterm birth: Seeing the good, not just the bad.

AIM: To describe parental perspective on health and developmental outcomes of their preterm child in relation to level of neurodevelopmental impairment (NDI). METHODS: A parental survey about their children aged 15-36 months corrected age born ˂29 weeks' gestation investigated parental concerns and positive attributes. Parental responses in relation to their child's level of NDI were examined using Kruskal-Wallis and chi-square for trend tests. RESULTS: One hundred ninety-nine parental responses were obtained for 163 children, including 44% with NDI. Vast majority of parents reported their children were developing well with good physical health. All parents, irrespective of NDI, reported their children were happy and had a positive personality. Appreciation of social interactions was higher for parents of children without versus with NDI (96% vs. 87%, p = 0.039). Parents of children with NDI were more likely to express concerns than those without NDI. Overall, development was the most common area of concern (45%), followed by the child's future (40%) and physical health (35%). CONCLUSION: Parents of preterm children report many positive points and concerns, some of which are not examined in neonatal follow-up data. These parental perspectives could be used to inform parents of preterm infants, both antenatally and in the neonatal unit.

Bereaved Parents: Insights for the Antenatal Consultation.

OBJECTIVE: The study aimed to explore experiences of extremely preterm infant loss in the delivery room and perspectives about antenatal consultation. STUDY DESIGN: Bereaved participants were interviewed, following a semi-structured protocol. Personal narratives were analyzed with a mixed-methods approach. RESULTS: In total, 13 participants, reflecting on 17 pregnancies, shared positive, healing and negative, harmful interactions with clinicians and institutions: feeling cared for or abandoned, doubted or believed, being treated rigidly or flexibly, and feeling that infant's life was valued or not. Participants stressed their need for personalized information, individualized approaches, and affective support. Their decision processes varied; some wanted different things for themselves than what they recommended for others. These interactions shaped their immediate experiences, long-term well-being, healing, and regrets. All had successful subsequent pregnancies; few returned to institutions where they felt poorly treated. CONCLUSION: Antenatal consultations can be strengthened by personalizing them, within a strong caregiver relationship and supportive institutional practices. KEY POINTS: · Personalized antenatal consultations should strive to balance cognitive and affective needs.. · Including perspectives from bereaved parents can strengthen antenatal consultations.. · Trusting provider-parent partnerships are pivotal for risk communication..

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.