The Ladder of Inference as a tool to reduce implicit bias in pediatric clinical practice.

Implicit bias in healthcare professionals is a widespread phenomenon that leads to worse healthcare outcomes for marginalized patient populations. One tool that can help providers identify when biases are impacting the clinical care they are providing and enable them to take corrective action in real time is the "Ladder of Inference" (LOI). The LOI is an instrument that elucidates the process by which we take in information about another person, filter that data through our own interests, needs, perspectives and biases, and then use it to draw conclusions about the individual. These conclusions are often profoundly inaccurate, yet we then act upon them. Thus, we propose the LOI as an "implicit bias detection tool" for neonatal intensive care unit (NICU) clinical practice. We demonstrate on two common NICU cases how utilizing the LOI can uncover mechanisms by which positive and negative feedback loops secondary to unregulated implicit bias lead to a stepwise increase or decrease in the quality of care. As the cases demonstrate, the subtle differences in individual steps up the ladder can lead to care differences of a large magnitude in either direction, hugely positive or detrimentally negative. This shift in the quality of care, then, may contribute to the significant neonatal outcome disparities in infants from minoritized groups. Using the LOI as a practical tool, we demonstrate how it becomes possible to detect one's own implicit biases and thus to consciously monitor the inferences we are making about patients and their families in order to counteract them.

Equity, inclusion and cultural humility: contemporizing the neonatal intensive care unit family-centered care model.

Existing NICU family centered care models lack the key elements of equity, inclusion and cultural humility. These models were conceived to support families during the stressful life event of an infant's NICU admission. Their development, however, occurred prior to recognition of the medical field's systematic shortcomings in providing equitable care and their impact on outcome disparities for marginalized communities; thus, they do not include cultural or equitable healthcare considerations. Given the significant neonatal care inequities for marginalized groups, incorporating the experience of these patients in a targeted manner into family centered care frameworks is of critical importance to ensure culturally humble and thus more just and equitable treatment. Here, we review past approaches to NICU family centered care and propose a novel, updated framework which integrates culturally humble care into the NICU family centered care framework.

Perinatal palliative care in sub-Saharan Africa: recommendations for practice, future research, and guideline development.

Worldwide, sub-Saharan Africa has the highest burden of global neonatal mortality (43%) and neonatal mortality rate (NMR): 27 deaths per 1,000 live births. The WHO recognizes palliative care (PC) as an integral, yet underutilized, component of perinatal care for pregnancies at risk of stillbirth or early neonatal death, and for neonates with severe prematurity, birth trauma or congenital anomalies. Despite bearing a disproportionate burden of neonatal mortality, many strategies to care for dying newborns and support their families employed in high-income countries (HICs) are not available in low-and-middle-income countries (LMICs). Many institutions and professional societies in LMICs lack guidelines or recommendations to standardize care, and existing guidelines may have limited adherence due to lack of space, equipment, supplies, trained professionals, and high patient load. In this narrative review, we compare perinatal/neonatal PC in HICs and LMICs in sub-Saharan Africa to identify key areas for future, research-informed, interventions that might be tailored to the local sociocultural contexts and propose actionable recommendations for these resource-deprived environments that may support clinical care and inform future professional guideline development.

Risk of death at home or on hospital readmission after discharge with pediatric tracheostomy.

OBJECTIVE: To evaluate outcomes of patients discharged home following tracheostomy, including the timing and place of death for non-survivors. STUDY DESIGN: We retrospectively reviewed medical records of infants undergoing tracheostomy between 2006 and 2017, within the first year of life for congenital or acquired neonatal conditions. RESULTS: Of the 224 patients discharged after tracheostomy, 127 (57%) required home mechanical ventilation (MV). Overall, 40 (18%) patients died (65% were on MV); 38% of the deaths occurred at home and 63% at a subsequent hospitalization. Having tube feeding was identified as significantly associated with increased mortality on multivariate analysis. Having a tracheostomy for upper airway obstruction was the only variable significantly associated with increased risk of death at home on multivariate analysis. CONCLUSIONS: Having tube feeding was associated with increased risk of death overall and having the tracheostomy for obstructive airway conditions was associated with death occurring at home.

Ethical challenges in first-in-human trials of the artificial placenta and artificial womb: not all technologies are created equally, ethically.

Artificial placenta and artificial womb technologies to support extremely premature neonates are advancing toward clinical testing in humans. Currently, no recommendations exist comparing these approaches to guide study design and optimal enrollment eligibility adhering to principles of research ethics. In this paper, we will explore how scientific differences between the artificial placenta and artificial womb approaches create unique ethical challenges to designing first-in-human trials of safety and provide recommendations to guide ethical study design for initial human translation.

Adapting user-centered design principles to improve communication of peer parent narratives on pediatric tracheostomy.

BACKGROUND: Parents who have to make tracheostomy decisions for their critically ill child may face forecasting errors and wish to learn from peer parents. We sought to develop an intervention with peer parent narratives to help parents anticipate and prepare for future challenges before making a decision. METHODS: To ensure that the intervention reflects parents' needs (rather than experts' opinions), we adapted a user-centered design (UCD) process to identify decision-critical information and refine the presentation format by interviewing parents who had tracheostomy decision making experience. Phase 1 (n = 10) presented 15 possible forecasting errors and asked participants to prioritize and justify the problematic ones. It also asked participants to comment on the draft narratives and preferred delivery mode and time of the intervention. Phase 2 (n = 9 additional parents and 1 previous parent) iteratively collected feedback over four waves of user interviews to guide revisions to the informational booklet. RESULTS: Phase 1 revealed that parents wanted information to address all forecasting errors as soon as tracheostomy becomes an option. They also highlighted diverse family situations and the importance of offering management strategies. The resulting prototype booklet contained five sections: introduction, child's quality of life, home care, practical challenges, and resources. Feedback from Phase 2 focused on emphasizing individualized situations, personal choice, seriousness of the decision, and caregiver health as well as presenting concrete illustrations of future challenges with acknowledgement of positive outcomes and advice. We also learned that parents preferred to use the booklet with support from the care team rather than read it alone. CONCLUSIONS: A UCD process enabled inclusion of parental perspectives that were initially overlooked and tailoring of the intervention to meet parental expectations. Similar UCD-based approaches may be valuable in the design of other types of patient communications (e.g., decision aids).

Resuscitation decisions in fetal myelomeningocele repair should center on parents' values: a counter analysis.

In our response to, "Parental request for non-resuscitation in fetal myelomeningocele repair: an analysis of the novel ethical tensions in fetal intervention" by Wolfe and co-authors, we argue that parental authority should guide resuscitation decision-making for a fetus at risk for preterm delivery as a complication of fetal myelomeningocele (fMMC) repair. Due to the elevated morbidity and mortality risks of combined myelomeningocele, extreme prematurity, and fetal hypoxia, parents' values regarding the acceptability of possible outcomes should be elicited and their preferences honored. Ethical decision-making in these situations must also consider the broader context of the fetal-maternal dyad. Innovations in fetoscopic approaches to fMMC repair may pose additional complexity to these resuscitation decisions.

Validity and Reliability of the Modified Attitudes About Drug Use in Pregnancy Scale.

OBJECTIVE: To contemporize the Attitudes About Drug Abuse in Pregnancy questionnaire, keep the length of the modified scale brief to promote use, and test the psychometric properties of the modified scale among perinatal nurses. DESIGN: Cross-sectional survey. SETTING: Four hospitals in the Midwestern United States. PARTICIPANTS: Registered nurses who worked in perinatal units (N = 440). METHODS: We collected data from participants using survey methods. Seven experts in perinatal substance use research and clinical care informed scale modifications. We used a split-sample design involving maternal-newborn units (labor, postpartum) and newborn-focused units (NICU, pediatrics). We evaluated construct validity using factor analysis and reliability using Cronbach's alpha. We tested for differences between units using analysis of variance and Tukey's post hoc honest significant difference test of pairwise differences. RESULTS: The final modified scale included 13 items that loaded on one factor and showed internal consistency reliability in both samples (α = .88-.91). We found a statistically significant difference in mean score between NICU and pediatric units; however, the absolute difference was small and likely not clinically significant. CONCLUSIONS: The Modified Attitudes About Drug Use in Pregnancy scale has initial evidence for validity and reliability, was updated to reflect current terminology in the field, and is a pragmatic tool for use in research.

Perspectives on Resuscitation Decisions at the Margin of Viability among Specialist Newborn Care Providers in Ghana and Ethiopia: A Qualitative Analysis.

BACKGROUND: In high income countries, guidelines exist recommending gestational age thresholds for offering and obligating neonatal resuscitation for extremely preterm infants. In low- and middle- income countries, this approach may be impractical due to limited/inconsistent resource availability and challenges in gestational dating. Scant literature exists on how clinicians in these settings conceptualize viability or make resuscitation decisions for premature infants. METHODS: Qualitative interviews of interprofessional neonatal clinicians were conducted in Kumasi, Ghana, at Komfo Anokye Teaching Hospital and Suntreso Government Hospital, and in Addis Ababa, Ethiopia, at St. Paul's Hospital Millennium Medical College. Transcribed interviews were coded through the constant comparative method. RESULTS: Three discrete major themes were identified. The principal theme was a respect for all life, regardless of the likelihood for survival. This sense of duty arose from a duty to God, a duty to the patient, and a duty intrinsic to one's role as a medical provider. The duty to resuscitate was balanced by the second major theme, an acceptance of futility for many premature infants. Lack of resources, inappropriate staffing, and historically high local neonatal mortality rates were often described. The third theme was a desire to meet global standards of newborn care, including having resources to adopt the 22-25-week thresholds used in high income countries and being able to consistently provide life-saving measures to premature infants. CONCLUSIONS: Neonatal clinicians in Ghana and Ethiopia described respect for all life and desire to meet global standards of newborn care, balanced with an awareness of futility based on local resource limitations. In both countries, clinicians highlighted how wide variations in regional survival outcomes limited their ability to rely on structured resuscitation guidelines based on gestational age and/or birthweight.

Using Narratives to Correct Forecasting Errors in Pediatric Tracheostomy Decision Making.

PURPOSE: Parents who face goals-of-care tracheostomy decisions may lack an understanding of challenges affecting their child's and family's long-term quality of life (QOL) to accurately forecast possible outcomes for decision making. We sought to examine whether and how parents' narratives of the child's and family's long-term QOL influence parental tracheostomy decisions and forecasting. METHOD: We recruited US adult Amazon Mechanical Turk participants (N = 1966) who self-reported having a child (<6 y old) or planning a pregnancy within 5 y. Participants read a vignette about making a tracheostomy decision for their hypothetical neurologically impaired baby. They were randomized to 1 of the following 4 conditions: 1) Baby QOL narratives, 2) Family QOL narratives, 3) Baby QOL + Family QOL narratives, and 4) control: no narratives. They then made a decision about whether or not to pursue tracheostomy, forecasted their concerns about the baby's and family's QOL, reported their values and social norm beliefs about tracheostomy, comfort care, and parental medical decision making, and completed individual differences scales and demographics. RESULTS: Controlling for individual characteristics, participants in the Baby QOL and Baby QOL + Family QOL conditions were less likely to choose tracheostomy as compared with the control (odds ratio [OR] = 0.38 and 0.25, respectively, P < 0.001). Fewer participants in the Family QOL condition chose tracheostomy compared with the control, but this difference was not statistically significant (OR = 0.70, P = 0.11). Moreover, narratives increased pessimistic forecasting, which was associated with less interest in tracheostomy. CONCLUSION: Narratives clarifying long-term implications of pursuing tracheostomy have the potential to influence forecasting and decisions. Narrative-based interventions may be valuable in other situations in which forecasting errors are common.

Hilariously Bad News: Medical Improv as a Novel Approach to Teach Communication Skills for Bad News Disclosure.

A targeted, improv-based exercise was developed as a novel skills training approach to bad news disclosure for medical professionals and trainees, focusing on specific characteristics that influence these conversations including nature of the bad news, implications, personal responsibility, and status differences.

Values-based shared decision-making in the antenatal period.

Despite advances in life-saving technology for critically ill neonates, challenges continue to arise for infants delivered with extreme prematurity, congenital anomalies, and genetic conditions that exceed the limits of currently available interventions. In these situations, parents are forced to make cognitively and emotionally difficult decisions, in discussion with a neonatologist, regarding how aggressively to provide supportive measures at the time of delivery and at what point burdens of therapy outweigh benefits. Current guidelines recommend that parents' values should guide these decisions; however, little is known about the values parents hold, and how those values are employed in the context of complexity, uncertainty, and emotionality of these situations. Systematic investigation of how parents derive their values and how clinicians should engage with parents about those values is necessary to guide the development of interventions to enhance shared decision-making processes, ultimately improving satisfaction, coping, and resilience and minimizing the potential for regret.

Identifying the Types of Support Needed by Interprofessional Teams Providing Pediatric End-of-Life Care: A Thematic Analysis.

BACKGROUND: Despite the number of interprofessional team members caring for children at the end of life, little evidence exists on how institutions can support their staff in providing care in these situations. OBJECTIVE: We sought to evaluate which aspects of the hospital work environment were most helpful for multidisciplinary team members who care for patients at the end of life and identify areas for improvement to better address staff needs. DESIGN: Qualitative thematic analysis was completed of free-text comments from a survey distributed to interprofessional staff members involved in the care of a recently deceased pediatric patient. A total of 2701 surveys were sent; 890 completed. Free-text responses were provided by 306 interprofessional team members. SETTING/SUBJECTS: Interprofessional team members involved in the care of a child who died at a 348 bed academic children's hospital in the Midwestern United States. MEASUREMENTS: Realist thematic analysis of free-text responses was completed in Dedoose using a deductive and inductive approach with line-by-line coding. Descriptive statistics of demographic information was completed using Excel. RESULTS: Thematic analysis of the 306 free-text responses identified three main support-related themes. Interprofessional team members desire to have (1) support through educational efforts such as workshops, (2) support from colleagues, and (3) support through institutional practices. CONCLUSIONS: Providers who participate in end-of-life work benefit from ongoing support through education, interpersonal relationships, and institutional practices. Addressing these areas from an interprofessional perspective enables staff to provide the optimal care for patients, patients' families, and themselves.

Caring for Families at the Limits of Viability: The Education of Dr Green.

Resuscitation decisions for infants born at the edges of viability are complicated moral dilemmas, and the process of making these decisions is emotionally exhausting and morally distressful for families and physicians alike. An ethical approach to making these decisions requires input from physicians and parents; individuals tasked with facilitating such decisions must possess the communication and counseling skills needed to assist families with these painful and life-altering decisions. It is incumbent on all of us to continue our investigation into how we can better assist families in this process while providing care that is in their best interest.