Meeting our students where they are: An ethics certificate program for hospital ethics committees.

To meet the specific education needs of ethics committee members (primarily full-time healthcare professionals), the Regional Ethics Department of Kaiser Permanente Northern California (KPNCAL) and Washington State University's Elson Floyd School of Medicine have partnered to create a one-academic year Medical Ethics Certificate Program. The mission-driven nature of the KPNCAL-WSU's Certificate Program was designed to be a low-cost, high-quality option for busy full-time practitioners who may not otherwise opt to pursue additional education.This article discusses the specific competency-focused methodologies and pedagogies adopted, as well as how the Certificate Program made permanent changes in response to the global pandemic.

Key Contextual Factors Involved with Participation in Medical and Genomic Screening and Research for African American and Caucasian Americans: A Qualitative Inquiry American Journal of Community Genetics.

Tremendous progress has been made promoting diversity in recruitment for genomic research, yet challenges remain for several racial demographics. Research has cited intertwined fears of racial discrimination and medical mistrust as contributing factors. This study aimed to identify key factors to establishing trust in medical and genomic screening and research among African Americans and White Americans.

Prognostic Discordance Among Parents and Physicians Caring for Infants with Neurologic Conditions.

Objective: To determine the frequency, degree, and nature of prognostic discordance between parents and physicians caring for infants with neurologic conditions.

Study Design: In this observational cohort study, we enrolled parents and physicians caring for infants with neurologic conditions in advance of a family conference. Parent-physician dyads completed a postconference survey targeting expected neurologic outcomes across 3 domains (motor, speech, and cognition) using a 6-point scale.

Supporting Disclosure of Unmet Mental Health Needs among Parents of Critically Ill Infants.

Objective: To characterize (1) the prevalence of mental health discussion and (2) facilitators of and barriers to parent disclosure of mental health needs to clinicians.

Study Design: Parents of infants with neurologic conditions in neonatal and pediatric intensive care units participated in a longitudinal decision-making study from 2018 through 2020. Parents completed semi-structured interviews upon enrollment, within 1 week after a conference with providers, at discharge, and 6 months post-discharge.

Deciding Whether to Take Sacubitril/Valsartan: How Cardiologists and Patients Discuss Out-of-Pocket Costs.

Background Out-of-pocket costs have significant implications for patients with heart failure and should ideally be incorporated into shared decision-making for clinical care. High out-of-pocket cost is one potential reason for the slow uptake of newer guideline-directed medical therapies for heart failure with reduced ejection fraction. This study aims to characterize patient-cardiologist discussions involving out-of-pocket costs associated with sacubitril/valsartan during the early postapproval period.

The ALIGN Framework: A Parent-Informed Approach to Prognostic Communication for Infants With Neurologic Conditions.

Background And Objectives: Clinicians often communicate complex, uncertain, and distressing information about neurologic prognosis to parents of critically ill infants. Although communication tools have been developed in other disciplines and settings, none address the unique needs of the neonatal and pediatric neurology context. We aimed to develop a parent-informed framework to guide clinicians in communicating information about neurologic prognosis.

Characterizing the Language Used to Discuss Death in Family Meetings for Critically Ill Infants.

Importance: Communication during conversations about death is critical; however, little is known about the language clinicians and families use to discuss death.

Objective: To characterize (1) the way death is discussed in family meetings between parents of critically ill infants and the clinical team and (2) how discussion of death differs between clinicians and family members.

Design, Setting, And Participants: This longitudinal qualitative study took place at a single academic hospital in the southeast US.

How can healthcare organizations improve cost-of-care conversations? A qualitative exploration of clinicians' perspectives.

Objectives: Clinicians increasingly believe they should discuss costs with their patients. We aimed to learn what strategies clinicians, clinic leaders, and health systems can use to facilitate vital cost-of-care conversations.

Methods: We conducted focus groups and semi-structured interviews with outpatient clinicians at two US academic medical centers.

Role of Social Workers in Family Conferences for Critically Ill Infants.

Communication challenges in the neonatal intensive care unit include fragmented communication, challenges managing expectations amidst uncertainty, and navigating complex medical information. Social workers are well suited to mitigate these challenges. In this study, we aimed to characterize the extent and nature of social worker participation in family conferences for critically ill infants.

Decision Making for Infants With Neurologic Conditions.

Parents and clinicians caring for infants with neurologic disease often make high-stakes decisions about infant care. To characterize how these decisions occur, we enrolled infants with neurologic conditions, their parents, and their clinicians in a longitudinal mixed methods study of decision making. We audio recorded family conferences as they occurred and analyzed conferences using a directed content analysis approach.

Family-Centered Care for Children and Families Impacted by Neonatal Seizures: Advice From Parents.

Background: Parents of neonates with seizures are at risk of mental health symptoms due to the impact of illness on family life, prognostic uncertainty, and the emotional toll of hospitalization. A family-centered approach is the preferred model to mitigate these challenges. We aimed to identify strategies to promote family-centered care through an analysis of parent-offered advice to clinicians caring for neonates with seizures.

Assessment of parent understanding in conferences for critically ill neonates.

Objectives: This study aimed to characterize the use and impact of assessments of understanding in parent-clinician communication for critically ill infants.

Methods: We enrolled parents and clinicians participating in family conferences for infants with neurologic conditions. Family conferences were audio recorded as they occurred.

Parent experience of caring for neonates with seizures.

Objective: Neonates with seizures have a high risk of mortality and neurological morbidity. We aimed to describe the experience of parents caring for neonates with seizures.

Design: This prospective, observational and multicentre () study enrolled parents of neonates with acute symptomatic seizures.

Education Research: The medical student perspective on challenging conversations.

Objective: Medical students experience difficult conversations with patients during clinical clerkships. This study aimed to characterize barriers to and opportunities for learning in the setting of challenging conversations.

Methods: Neurology clerkship medical students were enrolled prospectively in a concurrent nested mixed methods study.

Surgical decision making in the setting of severe traumatic brain injury: A survey of neurosurgeons.

Background: Surgical decision-making in severe traumatic brain injury (TBI) is complex. Neurosurgeons weigh risks and benefits of interventions that have the potential to both maximize the chance of recovery and prolong suffering. Inaccurate prognostication can lead to over- or under-estimation of outcomes and influence treatment recommendations.

Neurologic Outcome After Prematurity: Perspectives of Parents and Clinicians.

Background: Parents and clinicians caring for premature infants face high-stakes and time-sensitive decisions about care. We aimed to characterize how parents and clinicians discuss outcome in the context of decision-making for premature infants.

Methods: In this qualitative descriptive study, we used a case-based, prospective design.

What risk of death would people take to be cured of HIV and why? A survey of people living with HIV.

People living with HIV (PLWHIV) can reasonably expect near-normal longevity, yet many express a willingness to assume significant risks to be cured. We surveyed 200 PLWHIV who were stable on antiretroviral therapy (ART) to quantify associations between the benefits they anticipate from a cure and their risk tolerance for curative treatments. Sixty-five per cent expected their health to improve if cured of HIV, 41% predicted the virus would stop responding to medications over the next 20 years and 54% predicted experiencing serious medication side effects in the next 20 years.

Neurodevelopmental Risk: A Tool to Enhance Conversations With Families of Infants.

Parents of infants at risk of neurodevelopmental impairment require clear and individualized information about what to expect for their child, yet data suggest they have difficulty knowing how to ask for this information. Here, we pilot a Question Prompt List (QPL) with parents of infants at risk of neurodevelopmental impairment. To assess real-time use of the QPL, we recorded family meetings and collected data from parents and clinicians about the QPL experience.