Research with Refugee Populations in North America: Applying the NIH Guiding Principles for Ethical Research.

This article examines the ethics of research design and the initiation of a study (e.g., recruitment of participants) involving refugee participants. We aim to equip investigators and members of IRBs with a set of ethical considerations and pragmatic recommendations to address challenges in refugee-focused research as it is developed and prepared for IRB review. We discuss challenges including how refugees are being defined and identified; their vulnerabilities before, during, and following resettlement that impacts their research participation; recruitment; consent practices including assent and unaccompanied minors; and conflicts of interest. Ethical guidance and regulatory oversight provided by international bodies, federal governments, and IRBs are important for enforcing the protection of participants. We describe the need for additional ethical guidance and awareness, if not special protections for refugee populations as guided by the National Institutes of Health (NIH) Guiding Principles for Ethical Research.

Specific Trends in Pediatric Ethical Decision-Making: An 18-Year Review of Ethics Consultation Cases in a Pediatric Hospital.

This is a qualitative examination of ethics consultation requests, outcomes, and ethics committee recommendations at a tertiary/quaternary pediatric hospital in the U.S. The purpose of this review of consults over an 18-year period is to identify specific trends in the types of ethical dilemmas presented in our pediatric setting, the impact of consultation and committee development on the number and type of consults provided, and any clinical features and/or challenges that emerged and contributed to the nature of ethical situations and dilemmas. Furthermore, in reviewing clinical ethics consultation trends for nearly two decades, we can identify topic areas for further ethics education and training for ethics consultants, ethics committee members, and pediatric healthcare teams and professionals based on our experiences. Our study with nearly two decades of data prior to the COVID-19 pandemic can serve as groundwork for future comparisons of consultation requests and ethics support for pediatric hospitals prior to, during, and following a pandemic.

Supporting and Contextualizing Pediatric ECMO Decision-Making Using a Person-Centered Framework.

AbstractThere is a critical need to establish a space to engage in careful deliberation amid exciting, important, necessary, and groundbreaking technological and clinical advances in pediatric medicine. Extracorporeal membrane oxygenation (ECMO) is one such technology that began in pediatric settings nearly 50 years ago. And while not void of medical and ethical examination, both the symbolic progression of medicine that ECMO embodies and its multidimensional challenges to patient care require more than an intellectual exercise. What we illustrate, then, is a person-centered framework that incorporates the philosophy and practice of palliative care and care-based ethical approaches. This person-centered framework is valuable for identifying and understanding challenges central to ECMO, guides collaborative decision-making, and recognizes the value of relationships within and between patients, families, healthcare teams, and others who impact and are impacted by ECMO. Specifically, this person-centered approach enables caregivers to provide compassionate and effective support in critical, and often urgent, situations where conflicts may emerge among healthcare team members, families, and other decision makers. By reflecting on three cases based on actual situations, we apply our person-centered framework and identify those aspects that were utilized in and informed this project. We aim to fill a current gap in the pediatric ECMO literature by presenting a person-centered framework that promotes caregiving relationships among hospitalized critically ill children, families, and the healthcare team and is supported through the philosophy and practice of palliative care and clinical ethics.

Fulfilling 6 Domains of Health Care Quality: A Qualitative Parental Caregiver Study of Pediatric Telehealth During a Pandemic.

Using qualitative methods, we examine telehealth care quality from the perspective of parents of pediatric patients during a pandemic. We fill a gap in the literature essential for measuring effectiveness of pediatric telehealth. A total of 22 participants (n = 21 female; n = 1 male) enrolled in 1 of 9 interviews and focus groups conducted in 2021. Transcribed data were thematically analyzed and organized based on the 6 domains of quality health care by the Institute of Medicine (IOM). Analyzed data revealed 7 themes and 52 codes. Pediatric telehealth visits were perceived as efficient, timely, safe, and generally effective by parents for their child's health care. Participants experienced equal or greater time with their child's care provider via telehealth than through in-person visits. Qualitative results directly align with IOM domains of quality health care and contribute to the growing literature and evidence that may lead to improved telehealth outcomes and better preparedness for emergent public health events.

Understanding Drivers of Telemedicine in Pediatric Medical Care.

Purpose: As the demand for telemedicine services continues, greater knowledge about health care delivery preferences can inform high quality, efficient care. The present study sought to evaluate patient and family characteristics that may influence telemedicine utilization, particularly the choice between telephone and video telemedicine visits. Methods: This is a single-site cross-sectional, mixed methods study aimed at identifying factors associated with use of telephone and video telemedicine visits with pediatric patients and their families. Results: Seven hundred seventy-five (n = 775) caregivers completed a survey and 22 caregivers participated in follow-up focus groups and interviews. Findings indicate that female caregivers, those with higher education levels, and those with experience with technology were more likely to choose video telemedicine visits. Qualitative feedback provided several valuable recommendations based on patient/family experiences, which fell into four categories, including scheduling, accessibility, treatment resources, and care coordination. Conclusion: Findings demonstrate that previous experience, familiarity, and technology access may be important drivers in health care modality preference. Key elements that emerged relevant to user satisfaction and overall quality of the telemedicine experience: caregiver choice on visit type (telemedicine vs. in-person), child health care needs, and telemedicine education/training. As society moves toward pay-per-performance and value-based reimbursement, it is imperative that we focus on experience, health care needs, and training to improve patient experience and lower health care costs.

Interdisciplinary simulation for nursing and medical students about final conversations: Catalyzing relationships at the end of life (CAREol).

OBJECTIVES: Final conversations (FCs) go beyond how patients want to be cared for at the end of life (EOL) and focus on messages of love, identity specific, and unique to an individual and relationship that requires self-examination, everyday talk that normalizes a difficult situation, religious/spiritual messages, and if needed, difficult relationship talk to heal broken relationships. The purpose of the Catalyzing Relationships at the End of Life (CAREol) program was to provide interdisciplinary education to nursing and medical students and clinical faculty about facilitating FCs among patients and families. METHOD: This two-part, quasi-experimental program consisted of a cognitive (online) and experiential (live simulation) curriculum experience. Program curriculum, including video vignettes, readings, and live simulation (utilizing actors), was developed by the study team. Reflective journaling and researcher designed pre- and post-tests were used to assess comfort, confidence, importance, and distress regarding FCs and collaboration with other disciplines. RESULTS: The pre-/post-test questions demonstrate statistical significance based on a paired t-test with effect sizes supporting the practical importance of the findings for effect size. Preliminary content and thematic analysis of qualitative responses describe categories of the mock team meeting experience and interaction with the actors to change patient and family outcomes. SIGNIFICANCE OF RESULTS: Early intervention with the CAREol program provides a framework to help students and clinical faculty facilitate FCs that may result in peace and comfort for patients and families during a difficult time.

Feasibility and Acceptability: Narrative Writing with Caregivers in Pediatric Critical Care.

Background: Pediatric intensive care unit (PICU) admissions are caregiver stressors with potential long-term impact. Writing interventions have shown health benefits, although not yet with parents writing during their child's PICU admission. Objective: The study objective was to quantify intervention acceptability and feasibility and to qualitatively examine written texts. Design: This is a proof-of-concept three-arm randomized trial. Setting and Subjects: Subjects were legal caregivers ≥18 years, able to read and write English, and of children ≤18 years in a U.S. PICU for ≥1 day. Measurements: Treatment Acceptability Questionnaire, enrollment rates, completed encounters, and qualitative thematic analysis. Results: Acceptability was high (49% enrollment; mean [standard deviation] Treatment Acceptability Questionnaire scores: M = 24.8 [2.4]). Feasibility was 100% scheduled-to-completed sessions. Thematic analysis revealed two themes (people and relationships); texts were more cognitive than emotional. Conclusions: Caregivers, provided resources and supported by a narrative medicine facilitator, are likely to engage in expressive writing. The intervention warrants subsequent development.

Examining Illness through Pediatric Poetry and Prose: A Mixed Methods Study.

The purpose of this mixed-methods retrospective study was to characterize the linguistic and narrative properties of texts generated by hospitalized pediatric patients who are experiencing significant illnesses. These young writers voluntarily participated in a narrative intervention through a program at a children's hospital that serves diverse urban and rural populations. The primary aim was to use interpretive theoretical analysis and linguistic analysis to test the following hypotheses: (1) hospital-generated texts have linguistic characteristics consistent with texts written to improve health outcomes; (2) stories told by pediatric patients through poetry and prose can be classified using Frank's illness narrative types, serving as a starting point to situate caregivers into the pediatric writer's world in a moment in time; (3) pediatric stories are authentic stories that yield important insights about patients and their relationships with others despite lacking formal narrative elements (e.g., plot) and form.

The Mental Health of Refugees during a Pandemic: Striving toward Social Justice through Social Determinants of Health and Human Rights.

This paper is the second of two in a series. In our first paper, we presented a social justice framework emerging from an extensive literature review and incorporating core social determinants specific to mental health in the age of COVID-19 and illustrated specific social determinants impacting mental health (SDIMH) of our resettled Bhutanese refugee population during the pandemic. This second paper details specific barriers to the SDIMH detrimental to the basic human rights and social justice of this population during this pandemic. The SDIMH, as described, further informs the need for social justice measures and cultural humility in mental healthcare, public health, law, and community engagement. This work concludes with a proposed call to action toward mental health improvement and fair treatment for refugee populations in three core areas: communication and education, social stigma and discrimination, and accessibility and availability of resources.

The Mental Health of Refugees during a Pandemic: The Impact of COVID-19 on Resettled Bhutanese Refugees.

This paper is the first of two in a series. In this paper, we identify mental health needs and challenges in the age of COVID-19 among Nepali-speaking, Bhutanese resettled refugees in the USA. We argue for a public health justice framework that looks critically at social determinants impacting mental health (SDIMH) barriers, which negatively impact our Bhutanese population, and serves as a theoretical foundation toward public policy and law that will inform healthcare decisions and fair treatment of resettled refugees at the clinical bedside and in the community. We first describe our Bhutanese refugee population and the critical mental health issues that, for many, originated during political persecution and violent ethnic cleansing initiatives, or while living in refugee camps prior to resettlement to the USA. We present a social justice framework emerging from an extensive literature review and incorporating core social determinants specific to mental health in the age of COVID-19, which are guided by the social determinants of economic stability; neighborhoods and physical environment; education; nutrition and exercise; community and social context; healthcare system; and legal system. We illustrate specific SDIMH of our resettled Bhutanese refugees during the pandemic, followed by a second paper that details recommendations for applying the SDIMH in a collective effort to address specific barriers to mental healthcare and support.

Surgeons' re-operative valve replacement practices in patients with endocarditis due to drug use.

BACKGROUND: This study discerns surgeons' attitudes and practices in the determination of heart valve replacement for patients with infectious endocarditis (IE) due to intravenous drug use (IVDU). We aimed to identify the factors contributing to surgeons' decision-making process for initial and recurrent surgical heart valves and the availability of institutional guidance. METHODS: An IRB-approved, anonymous mixed-methods, open survey instrument was designed and validated with 24 questions. A convenience sample of cardiothoracic surgeons in the United States and globally resulted in a total of 220 study participants with 176 completing every question on the survey. RESULTS: A cluster analysis revealed that although surgeons can be divided into subgroups based on their previous experience with valve replacements, these groups are not perfectly homogenous, and the number of identified clusters is dependent on technique used. Analysis of variance revealed the variables that most clearly divided the surgeons into subgroups were, in order of importance, years of practice, number of valve replacements, and geography. CONCLUSIONS: Our analysis showed heterogeneity among cardiothoracic surgeons regarding how they make clinical decisions regarding re-operative valve replacement related to IE-IVDU. Therefore, an opportunity exists for interprofessional teams to develop comprehensive guidelines to decrease variability in surgical decision-making regarding valve replacement associated with IE-IVDU.

Does Using Humor to Cope With Stress Justify Making Fun of Patients?

This article considers 3 reasons for derogatory humor in clinical settings and argues that when such humor is directed at patients without understanding their complex histories, it can diminish the therapeutic relationship rather than serve as a coping strategy. This article also investigates how narrative medicine can guide deeper understanding of the motivations for using humor in clinical settings, why humor is directed at a particular person or group, and why derogatory, cynical, or dark humor might be unethical and unprofessional. Colleagues and mentors are essential for guiding students' and trainees' professional development and for helping them cultivate coping strategies that do not cause harm.

Dispelling Myths about Antenatal TAPS: A Call for Action for Routine MCA-PSV Doppler Screening in the United States.

In the United States, routine middle cerebral artery peak systolic velocity (MCA-PSV) Doppler screening for the detection of antenatal twin anemia-polycythemia sequence (TAPS) is not recommended. The current and only national clinical guideline from the highly-influential Society for Maternal-Fetal Medicine states that, "There is no evidence that monitoring for TAPS with MCA PSV Doppler at any time, including > 26 weeks, improves outcomes, so that this additional screening cannot be recommended at this time." We argue this recommendation has disproportionate influence on patients and the care they are offered and receive. We use current evidence to highlight and dispel pervasive myths surrounding antenatal TAPS and the value of routine MCA-PSV screening. An ethical framework that illustrates the importance of giving patients the opportunity for routine screening is presented. Findings demonstrate that: (1) both spontaneous and post-laser TAPS is a serious, potentially life-threatening complication, (2) treatment for TAPS is effective and includes expectant management, intrauterine transfusion (IUT), or surgery, (3) and routine MCA-PSV, which has satisfactory diagnostic accuracy, is currently the only way to provide early detection of TAPS. We conclude that routine TAPS screening is a medically proven valuable resource that should be offered to patients in need and to the clinicians who are trying to act toward their benefit.

How Should Health Care Professionals Address Social Determinants of Refugee Health?

In the case scenario, RJ is a resettled refugee teenager who presents to his physician with vitamin B12 deficiency, anemia, and symptoms of mental illness. This commentary considers social determinants of refugee health and the moral importance of freedom to achieve well-being. The capabilities framework is used to analyze this case because it offers an ethical framework for understanding and evaluating social determinants of refugee health that either promote or diminish freedom to achieve well-being. By using this framework to consider social isolation as a negative social determinant of refugee health, clinicians and institutions can be caregivers as well as advocates for social justice, fulfilling 2 core ethical obligations to refugee communities.

Twin-twin transfusion syndrome screening and diagnosis in the United States: A triangulation design of patient experiences.

OBJECTIVE: Using patient-reported experiences, this study: 1) quantitatively evaluated TTTS screening trends, 2) examined screening and diagnostic experiences using a mixed methods approach, and 3) determined gaps in clinical care experiences. DESIGN: This was a cross-sectional study. Data was collected using a self-report, retrospective survey. A triangulation design was used to validate quantitative survey data with thematically analyzed qualitative data. SETTING: Participants were recruited through social media and national foundations and completed the survey online. PARTICIPANTS: Participants were 312 women who completed a TTTS pregnancy in the United States, representing the largest survey of participants who have experienced TTTS. METHODS: Descriptive statistics and bivariate analyses were conducted. Multivariate logistic regression examined predictors of ultrasound frequency. Qualitative data were initially coded by hand and checked using qualitative software. RESULTS: The percentages of participants reporting guideline recommended screening, including identification of pregnancy type by gestational week 13 and timely receipt of ultrasounds, increased over time. However, 44.6% of participants diagnosed in recent years (2014 and later), reported that prior to TTTS diagnosis, they did not receive biweekly or more frequent ultrasounds. Three patient-reported provider practices were related to receiving ultrasounds at the recommended frequency: (1) determining MCDA status prior to gestational week 14, (2) providing participants with early warnings about the risk of TTTS to their pregnancies after MCDA status had been determined, and (3) referring participants to a Maternal-Fetal Medicine Specialist after MCDA identification, as validated by qualitative data. Our qualitative data revealed gaps in effective clinical care experiences among OB/GYN and specialist providers. CONCLUSION: These findings indicate screening and diagnosis for TTTS, as reported by patients, is improving in the United States; however, further efforts are required to ensure all patients receive appropriate screening, education and a team-based approach to comprehensive and supportive clinical care.