Lessons Learned Establishing the Palliative Care Research Cooperative's Qualitative Data Repository.

Data sharing is increasingly an expectation in health research as part of a general move toward more open sciences. In the United States, in particular, the implementation of the 2023 National Institutes of Health Data Management and Sharing Policy has made it clear that qualitative studies are not exempt from this data sharing requirement. Recognizing this trend, the Palliative Care Research Cooperative Group (PCRC) realized the value of creating a de-identified qualitative data repository to complement its existing de-identified quantitative data repository. The PCRC Data Informatics and Statistics Core leadership partnered with the Qualitative Data Repository (QDR) to establish the first serious illness and palliative care qualitative data repository in the U.S. We describe the processes used to develop this repository, called the PCRC-QDR, as well as our outreach and education among the palliative care researcher community, which led to the first ten projects to share the data in the new repository. Specifically, we discuss how we co-designed the PCRC-QDR and created tailored guidelines for depositing and sharing qualitative data depending on the original research context, establishing uniform expectations for key components of relevant documentation, and the use of suitable access controls for sensitive data. We also describe how PCRC was able to leverage its existing community to recruit and guide early depositors and outline lessons learned in evaluating the experience. This work advances the establishment of best practices in qualitative data sharing.

Implementation of a clinician-led medication adherence intervention among patients with systemic lupus erythematosus.

OBJECTIVE: Medication nonadherence in systemic lupus erythematosus (SLE) leads to poor clinical outcomes. We developed a clinician-led adherence intervention that involves reviewing real-time pharmacy refill data and using effective communication to address nonadherence. Prior pilot testing showed promising effects on medication adherence. Here, we describe further evaluation of how clinicians implemented the intervention and identify areas for improvement. METHODS: We audio recorded encounters of clinician with patients who were nonadherent (90-day proportion of days covered (PDC) <80% for SLE medications). We coded recordings for intervention components performed, communication quality, and time spent discussing adherence. We also conducted semi-structured interviews with patients and clinicians about their experiences and suggestions for improving the intervention. We assessed change in 90-day PDC post-intervention. RESULTS: We included 25 encounters (median age 39, 100% female, 72% Black) delivered by 6 clinicians. Clinicians performed most intervention components consistently and exhibited excellent communication as coded by objective coders. Adherence discussions took on average 3.8 minutes, and 44% of patients had ≥20% increase in PDC post-intervention. In structured interviews, many patients felt heard and valued and described being more honest about nonadherence and more motivated to take SLE medications. Patients emphasized patient-clinician communication and financial and logistical assistance as areas for improvement. Some clinicians wanted additional resources and training to improve adherence conversations. CONCLUSION: We provide further evidence to support the feasibility, acceptability, and fidelity of the adherence intervention. Future work will optimize clinician training and evaluate the intervention's effectiveness in a large, randomized trial.

Discriminatory and valuing communication behaviors in cardiology encounters.

OBJECTIVE: Many have found racial differences in clinician-patient communication using validated codebooks that represent effective communication. No codebooks used for examining racial differences, however, have included patient input. In this paper, we describe creating codebook with Black patient advocates to determine if we could reliably code discriminatory/valuing communication and assess racial differences in these behaviors. METHODS: We created a codebook for discriminatory/valuing communication behaviors with the input of Black patient advocates. We used the codebook to analyze data from 101 audio recorded encounters between White cardiologists and Black and White patients. We examined the differences in the prevalence of behaviors in cardiology encounters. RESULTS: In comparison to White patients, cardiologists made fewer tailoring statements to their Black patients (68% vs. 49%, p = 0.07). Coders found 4 instances of stereotyping behaviors and only Black patients (p = 0.12). We found no significant associations between any of the other outcomes and patient race. Black patients had a lower incidence of tailoring statements (p = 0.13), lower incidence of interrupting statements (p = 0.16), and higher rushed global score (p = 0.14). CONCLUSION AND PRACTICE IMPLICATIONS: We found that coders can reliably identify discriminatory/valuing behaviors in cardiology encounters. Future work should apply these codes to other datasets to assess their validity and generalizability.

Advancing the Science of Palliative Care: Contributions of the Palliative Care Research Cooperative Group.

The Palliative Care Research Cooperative Group (PCRC) formed to lead, catalyze, and empower a community of scientists to build an evidence base to ensure high-quality care and optimal well-being for persons with serious illness and their caregivers. The PCRC grew to 630 members representing 220 distinct sites. The PCRC awarded 44 pilot grant awards (total investment $1.4 million), resulting in $15.8 million in extramural grant funding, supported monthly webinars, an annual mentorship selective, "Clinical Trials Intensives," research consultation, and grant review. Among the 169 Clinical Trials Intensive participants, 74 subsequently achieved extramural grant award funding with direct costs of over $139 million. The PCRC supported the submission of extramural research applications and fostered community through annual meetings, special interest groups, newsletters, and its website. The PCRC filled an important void in serious illness science and set the stage for the next era of advancing serious illness research.

Race differences in patient trust and distrust from audio-recorded cardiology encounters.

OBJECTIVE: Many have reported racial disparities in self-reported trust in clinicians but have not directly assessed expressions of trust and distrust in physician-patient encounters. We created a codebook to examine racial differences in patient trust and distrust through audio-recorded cardiologist-patient interactions. METHODS: We analyzed data from a randomized controlled trial of audio-recorded outpatient cardiology encounters (50 White and 51 Black patients). We created a codebook for trust and distrust that was applied to recordings between White cardiologists and White and Black patients. We assessed differences in trust, distrust, and guardedness while adjusting for patient age, sex, and first appointment with the cardiologist. RESULTS: Compared to White patients, Black patients had significantly lower expressions of trust ([IRR] [95 % CI]: 0.59 [0.41, 0.84]) and a significantly lower mean guarded/open score ([ß] [95 % CI] -0.38 [-0.71, -0.04]). There was no statistically significant association between race and odds of at least one distrustful expression (OR [95 % CI] 1.36 [0.37, 4.94]). CONCLUSION AND PRACTICE IMPLICATIONS: We found that coders can reliably identify patient expressions of trust and distrust rather than relying on problematic self-reported measures. Results suggest that White clinicians can improve their communication with Black patients to increase expressions of trust.

Communication coaching for sonographers (CCS): Preliminary evaluation of a novel intervention to improve unexpected news delivery.

Objective: Obstetric ultrasound scans provide real-time results. In some organisations and countries, the immediate communication of results by sonographers to patients is standard practice, but there is a lack of evidence-based training to support them with this challenging task. This pilot study evaluated a novel communication coaching intervention to improve sonographer communication. Methods: Coaches met with sonographers(N = 15) three times. Sonographers collected three audio recordings of scans involving unexpected news communication at baseline(R1), post-Session 1(R2) and post-Session 2(R3), which were rated for communication skills. Participants self-reported communication confidence and burnout before(T1) and after(T2) the intervention. Feedback was collected at T2. Data were analysed using paired-samples t-tests with bootstrapped significance estimates. Results: N = 10 sonographers completed the intervention. There were significant increases in communication skills(R1 m = 4.85, SD = 1.07; R3 m = 6.73, SD = 1.80, p = 0.003) and communication confidence(T1 m = 28.00, SD = 6.27; T2 m = 32.80, SD = 6.05, p = 0.005). There were no significant changes in burnout(p > 0.05). All respondents said they would recommend the intervention and most strongly agreed it was engaging(n = 8; 89%) and imparted useful skills(n = 8; 89%). Conclusion: Communication coaching is an acceptable, potentially effective tool for improving communication of unexpected news by sonographers in ultrasound. Innovation: This is the first evaluation of an intervention to support obstetric sonographers with news delivery.

Adapting a communication coaching intervention for obstetric sonographers delivering unexpected news: A qualitative study.

Introduction: Despite widespread recognition that communicating unexpected news during obstetric ultrasound examinations is challenging, there is a dearth of research investigating how to teach evidence-based communication to sonographers. Communication Coaching is a supportive, positive method that has previously been associated with improvements in communication, patient satisfaction, and reduced burnout in clinicians. However, to date, no study has coached sonographers. This study explored stakeholders' views on a proposed Communication Coaching intervention and used these data to adapt the intervention for use with qualified obstetric sonographers. Methods: Semi-structured interviews were conducted with people who have a vested interest in unexpected news delivery and thematic analysis was conducted on the data. Eight sonographers, six people with lived experience of receiving unexpected news and six representatives from third-sector organisations who support expectant parents were recruited (18 women; 2 men, aged between 21 and 75 years). Results: Participants viewed the planned Communication Coaching intervention favourably and suggested adaptations. The two main themes were (1) the practicalities of coaching, and (2) content. The first theme had four subthemes: (a) brief and flexible structure, (b) online modality, (c) sensitive and positive coach and (d) organisational awareness. The second theme had three subthemes: (a) specific language and behaviour recommendations, (b) adaptable to different service-users and situations and (c) confer relevant emotional skills and techniques. Conclusions: Communication Coaching could be a feasible and acceptable intervention for qualified sonographers if specific, limited adaptations are made as recommended by the stakeholders. Further evaluation of the intervention in practice is necessary.

Cancer Treatment Decision-Making for People Living With HIV: Physician-Reported Barriers, Facilitators, and Recommendations.

BACKGROUND: Compared with the general cancer population, people living with HIV (PLWH) and cancer are less likely to receive treatment and have significantly elevated cancer-specific mortality for many common cancer types. Physician recommendations drive the cancer therapy that patients receive, yet there is limited information assessing how cancer treatment decisions are made for people living with HIV and cancer. We sought to understand oncologist decision-making in PLWH and cancer by eliciting barriers, facilitators, and recommendations for enhancing care delivery. SETTING: Participants were recruited between May 2019 and May 2021 from one academic medical center in the western United States (n = 13), another in the southeastern United States (n = 7), and community practices nationwide (n = 5). METHODS: Using an inductive qualitative approach, we conducted in-depth interviews with 25 oncologists from two academic medical centers and community practices. RESULTS: Facilitators of cancer care delivery included readily available information regarding HIV status and stage, interdepartmental communication, and antiviral therapy adherence. Barriers included a lack of formal education on HIV malignancies, perceptions of decreased life expectancy, fear of inadvertent disclosure, and drug-drug interactions. Recommendations included improved provider communication, patient social and mental health resources, and continuing education opportunities. CONCLUSION: The study revealed drivers of cancer treatment decision-making, highlighting physician-reported barriers and facilitators, and recommendations to support treatment decision-making. This is the first known study examining oncologists' perceptions of caring for PLWH. Given that cancer is a leading cause of death among PLWH, there is an urgent need to improve care and outcomes.

Neighborhood Public Transportation Access and Adolescent Body Mass Index: Results from the FLASHE Study.

Background: Prior investigators have examined the relationship between neighborhood public transportation access and physical activity among adolescents, but research is lacking on the association with obesity in this age group. This study examines the association between neighborhood public transportation access and adolescent BMI using a national sample. Methods: We used cross-sectional data from the Family Life, Activity, Sun, Health, and Eating study, a national survey (2014) that assessed physical activity and diet, among adolescents (aged 12-17 years, N = 1737) and their parents. We ran crude and adjusted linear regression models to test the association between neighborhood-level public transportation access (less prevalent and prevalent) and individual participant-level BMI z-scores. Results: The analytic sample included 336 adolescents (50% female; 69% had healthy weight; 28% had overweight or obesity). Adjusted models showed a positive relationship between high public transportation access and adolescent z-BMI (b = 0.25, confidence interval [95% CI]: -0.01 to 0.50). In stratified analyses, high public transportation access was associated with higher z-BMI for high school students (b = 0.57, 95% CI: 0.23-0.91), males (b = 0.48, 95% CI: 0.09-0.87), and adolescents in households with an income below $99,999 (0.29, 95% CI: 0.02-0.56). Conclusion: Neighborhood public transportation access is associated with adolescent BMI, but the direction of this association varies across urban adolescent demographic subgroups. Further research is needed to clarify the relationships between individual and social-environmental factors that impact public transportation access and its association with adolescent BMI.

A qualitative analysis of trust and distrust within patient-clinician interactions.

Objectives: Trust represents a key quality of strong clinician-patient relationships.1 Many have attempted to assess patient-reported trust. However, most trust measures suffer from ceiling effects, with no variability, making it not possible to examine predictors of trust and distrust. Rather than rely on patient reports, we created a codebook for instances of trust and distrust from actual patient-clinician encounters. Methods: Three coders conducted a qualitative analysis of audio recordings among patient-cardiologist outpatient encounters. Results: We identified trust and distrust based on vocal and verbal cues in the interactions. We found consistent patterns that indicated patient trust and distrust. Conclusion: Overall, this work empirically validates a new more accurate measurement of trust for patient-doctor interactions. Innovation: We are the first to use audio recordings to identify verbal markers of trust and distrust in patient-clinician interactions. From this work, others can code trust and distrust in recorded encounters rather than rely on self-report measures.

Patient and Caregiver Expression of Reluctance and Ambivalence During Palliative Care Encounters.

Context: Patients with serious illness and their caregivers often face challenging decisions. When faced with these decisions, patients and caregivers may display signs of ambivalence and reluctance toward end-of-life decision making. Methods: We recruited 22 palliative care clinicians to participate in a communication coaching study. Clinicians audio recorded four of their palliative care encounters with adult patients and family caregivers. A team of 5 coders used inductive coding methods to create a codebook and then coded instances of patients and caregivers expressing ambivalence and reluctance. They also coded when the decision-making process was initiated and whether a decision was made. The group coded 76 encounters, and 10% (n = 8) of those encounters were double coded to assess inter-rater reliability. Results: We found that ambivalence occurred in 82% (n = 62) of the encounters, while reluctance occurred in 75% (n = 57) of the encounters. The overall prevalence of either was 89% (n = 67). The presence of ambivalence was negatively associated with a decision being made once initiated (r = -0.29, p = 0.06). Conclusion: We found that coders can reliably identify patient and caregiver reluctance and ambivalence. Further, reluctance and ambivalence occur frequently in palliative care encounters. When patients and caregivers have ambivalence, decision making might be hampered.

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. We used a conventional content analysis approach and NVIVO 12 to analyze data related to mental health. RESULTS: We enrolled 61 parents (n = 40 mothers, n = 21 fathers) of 40 infants with neurologic conditions in the intensive care unit. In total, 123 interviews were conducted with 52 of these parents (n = 37 mothers, n = 15 fathers). Over two-thirds of parents (n = 35/52, 67%) discussed their mental health in a total of 61 interviews. We identified two key domains when approaching the data through the lens of mental health: (1) self-reported barriers to communicating mental health needs: parents shared uncertainty about the presence or benefit of support, a perceived lack of mental health resources and emotional support, and concerns about trust; (2) self-reported facilitators and benefits of communicating mental health needs: parents described the value of supportive team members, connecting to peer support, and speaking to a mental health professional or neutral third party. CONCLUSIONS: Parents of critically ill infants are at high risk of unmet mental health needs. Our results highlight modifiable barriers and actionable facilitators to inform interventions to improve mental health support for parents of critically ill infants.

Empathic communication between clinicians, patients, and care partners in palliative care encounters.

OBJECTIVE: Palliative care encounters often involve empathic opportunities conveyed by patients and their care partners. In this secondary analysis, we examined empathic opportunities and clinician responses with attention to how presence of multiple care partners and clinicians shapes empathic communication. METHODS: We used the Empathic Communication Coding System (ECCS) to characterize emotion-focused, challenge-focused, and progress-focused empathic opportunities and responses in 71 audio-recorded palliative care encounters in the US. RESULTS: Patients expressed more emotion-focused empathic opportunities than did care partners; care partners expressed more challenge-focused empathic opportunities than did patients. Care partners initiated empathic opportunities more frequently when more care partners were present, though they expressed fewer as the number of clinicians increased. When more care partners and more clinicians were present, clinicians had fewer low-empathy responses. CONCLUSION: The number of care partners and clinicians present affect empathic communication. Clinicians should be prepared for empathic communication focal points to shift depending on the number of care partners and clinicians present. PRACTICE IMPLICATIONS: Findings can guide development of resources to prepare clinicians to meet emotional needs in palliative care discussions. Interventions can coach clinicians to respond empathically and pragmatically to patients and care partners, particularly when multiple care partners are in attendance.

Patient- and Family-Centered Hospital Care-The Need for Structural Humility.

This Viewpoint discusses communication between clinicians and caregivers of racial and ethnic minoritized groups.

The Use of Templates for Documenting Advance Care Planning Conversations: A Descriptive Analysis.

CONTEXT: While professional societies and expert panels have recommended quality indicators related to advance care planning (ACP) documentation, including using structured documentation templates, it is unclear how clinicians document these conversations. OBJECTIVE: To explore how clinicians document ACP, specifically, which components of these conversations are documented. METHODS: A codebook was developed based on existing frameworks for ACP conversations and documentation. ACP documentation from a hospital medicine quality improvement project conducted from November 2019 to April 2021 were included and assessed. Documentation was examined for the presence or absence of each component within the coding schema. Clinician documented ACP using three different note types: template (only template prompts were used), template plus (authors added additional text to the template), and free text only. ACP note components were analyzed by note type and author department. RESULTS: A total of 182 ACP notes were identified and reviewed. The most common note type was template plus (58%), followed by free text (28%) and template (14%). The most frequent components across all note types were: important relationships to patient (92%), and discussion of life-sustaining treatment preferences (87%). There was considerable heterogeneity in the components across note types. The presence of components focused on treatment decisions and legal paperwork differed significantly between note types (P < 0.05). Components on preference for medical information, emotional state, or spiritual support were rarely included across all note types. CONCLUSION: This study provides a preliminary exploration of ACP documentation and found that templates may influence what information is documented after an ACP conversation.

Effect of a Coaching Intervention to Improve Cardiologist Communication: A Randomized Clinical Trial.

Importance: Communication between cardiologists and patients can significantly affect patient comprehension, adherence, and satisfaction. To our knowledge, a coaching intervention to improve cardiologist communication has not been tested. Objective: To evaluate the effect of a communication coaching intervention to teach evidence-based communication skills to cardiologists. Design, Setting, and Participants: This 2-arm randomized clinical trial was performed at outpatient cardiology clinics at an academic medical center and affiliated community clinics, and from February 2019 through March 2020 recruited 40 cardiologists and audio recorded 161 patients in the preintervention phase and 240 in the postintervention phase. Data analysis was performed from March 2022 to January 2023. Interventions: Half of the cardiologists were randomized to receive a coaching intervention that involved three 1:1 sessions, 2 of which included feedback on their audio-recorded encounters. Communication coaches taught 5 skills derived from motivational interviewing: (1) sitting down and making eye contact with all in the room, (2) open-ended questions, (3) reflective statements, (4) empathic statements, and (5) "What questions do you have?" Main Outcomes and Measures: Coders unaware of study arm coded these behaviors in the preintervention and postintervention audio-recorded encounters (objective communication). Patients completed a survey after the visit to report perceptions of communication quality (subjective communication). Results: Analysis included 40 cardiologists (mean [SD] age, 47 [9] years; 7 female and 33 male) and 240 patients in the postintervention phase (mean [SD] age, 58 [15] years; 122 female, 118 male). When controlling for preintervention behaviors, cardiologists in the intervention vs control arm were more likely to make empathic statements (intervention: 52 of 117 [44%] vs control: 31 of 113 [27%]; P = .05); to ask, "What questions do you have?" (26 of 117 [22%] vs 6 of 113 [5%]; P = .002); and to respond with empathy when patients expressed negative emotions (mean ratio of empathic responses to empathic opportunities, 0.50 vs 0.20; P = .004). These effects did not vary based on patient or cardiologist race or sex. We found no arm differences for open-ended questions or reflective statements and were unable to assess differences in patient ratings due to ceiling effects. Conclusions and Relevance: In this randomized clinical trial, a communication coaching intervention improved 2 key communication behaviors: expressing empathy and eliciting questions. Empathic communication is a harder-level skill that may improve the patient experience and information comprehension. Future work should explore how best to assess the effect of communication coaching on patient perceptions of care and clinical outcomes and determine its effectiveness in larger, more diverse samples of cardiologists. Trial Registration: ClinicalTrials.gov Identifier: NCT03464110.

Improving Cancer Care for People Living With HIV: A Qualitative Study of Provider Knowledge, Attitudes, and Practice.

PURPOSE: Cancer is now the leading cause of non-AIDS death in the US population with HIV. People living with HIV (PLWH) are known to have lower cancer treatment rates and worse cancer outcomes. Disparate cancer treatment is driven by health system, patient, and clinician factors. Little attention has been given to the factors oncologists consider when making cancer treatment recommendations to PLWH. This study sought to examine oncologists' knowledge, attitudes, and practices that influence cancer treatment decision-making. METHODS AND MATERIALS: This study used qualitative methods to explore oncologists' treatment decision-making processes for PLWH and cancer. The sample included 25 radiation, medical, and surgical oncologists from 2 academic centers and 5 community practices. The interview domains were developed from the Andersen Healthcare Utilization Model, the Health Belief Model, and the PEN-3 Model, as well as our prior survey research. RESULTS: This study describes elements of cancer treatment decision-making for PLWH. Oncologists highlighted the need for formal HIV education to support cancer treatment. One main concern with patient-provider interactions pertained to maintaining patient confidentiality during clinical encounters. Lastly, the importance of multidisciplinary care among health care providers allowed oncologists to facilitate both cancer care and logistical support. CONCLUSIONS: As cancer becomes an increasingly common cause of death among PLWH, it is critical to understand the drivers of the observed disparities in cancer treatment. To our knowledge, this is the first qualitative study to describe oncologists' knowledge, attitudes, and practices toward patients who have a comorbid diagnosis of HIV and cancer. Several themes for future interventions emerge, including HIV training for cancer care providers, fostering interdisciplinary collaboration, enhancing HIV education for oncology learners and clinicians, and minimizing implicit bias.

Development of a keyword library for capturing PRO-CTCAE-focused "symptom talk" in oncology conversations.

Objectives: As computational methods for detecting symptoms can help us better attend to patient suffering, the objectives of this study were to develop and evaluate the performance of a natural language processing keyword library for detecting symptom talk, and to describe symptom communication within our dataset to generate insights for future model building. Materials and Methods: This was a secondary analysis of 121 transcribed outpatient oncology conversations from the Communication in Oncologist-Patient Encounters trial. Through an iterative process of identifying symptom expressions via inductive and deductive techniques, we generated a library of keywords relevant to the Patient-Reported Outcome version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE) framework from 90 conversations, and tested the library on 31 additional transcripts. To contextualize symptom expressions and the nature of misclassifications, we qualitatively analyzed 450 mislabeled and properly labeled symptom-positive turns. Results: The final library, comprising 1320 terms, identified symptom talk among conversation turns with an F1 of 0.82 against a PRO-CTCAE-focused gold standard, and an F1 of 0.61 against a broad gold standard. Qualitative observations suggest that physical symptoms are more easily detected than psychological symptoms (eg, anxiety), and ambiguity persists throughout symptom communication. Discussion: This rudimentary keyword library captures most PRO-CTCAE-focused symptom talk, but the ambiguity of symptom speech limits the utility of rule-based methods alone, and limits to generalizability must be considered. Conclusion: Our findings highlight opportunities for more advanced computational models to detect symptom expressions from transcribed clinical conversations. Future improvements in speech-to-text could enable real-time detection at scale.

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. METHODS: Parents of infants with neurologic conditions in the intensive care unit were enrolled in a longitudinal study of shared decision-making from 2018 to 2020. Parents completed semistructured interviews following recorded family meetings with the health care team, at hospital discharge, and 6 months after discharge. All interviews targeted information about parent preferences for prognostic disclosure. We analyzed the data using a conventional content analysis approach. Two study team members independently coded all interview transcripts, and discrepancies were resolved in consensus. We used NVIVO 12 qualitative software to index and organize codes. RESULTS: Fifty-two parents of 37 infants completed 123 interviews. Parents were predominantly mothers (n = 37/52, 71%) with a median age of 31 (range 19-46) years. Half were Black (n = 26/52, 50%), and a minority reported Hispanic ethnicity (n = 2/52, 4%). Inductive analysis resulted in the emergence of 5 phases of prognostic communication (Approach, Learn, Inform, Give support, and Next steps: ALIGN): (1) Approach: parents appreciated receiving consistent information about their child's neurologic outcome from clinicians who knew their child well. (2) Learn: parents valued when clinicians asked them how they preferred receiving information and what they already knew about their child's outcome prior to information delivery. (3) Inform: parents valued honest, thorough, and balanced information that disclosed prognostic uncertainty and acknowledged room for hope. (4) Give support: parents valued empathic communication and appreciated clinicians who offered real-time emotional support. (5) Next steps: parents appreciated clinicians who connected them to resources, including peer support. DISCUSSION: The ALIGN framework offers a novel, parent-informed strategy to effectively communicate neurologic prognosis. Although ALIGN represents key elements of a conversation about prognosis, each clinician can adapt this framework to their own approach. Future work will assess the effectiveness of this framework on communication quality and prognostic understanding.

Racial and Ethnic Differences in Communication Quality During Family-Centered Rounds.

OBJECTIVES: To evaluate racial and ethnic differences in communication quality during family centered rounds. METHODS: We conducted an observational study of family-centered rounds on hospital day 1. All enrolled caregivers completed a survey following rounds and a subset consented to audio record their encounter with the medical team. We applied a priori defined codes to transcriptions of the audio-recorded encounters to assess objective communication quality, including medical team behaviors, caregiver participatory behaviors, and global communication scores. The surveys were designed to measure subjective communication quality. Incident Rate Ratios (IRR) were calculated with regression models to compare the relative mean number of behaviors per encounter time minute by race and ethnicity. RESULTS: Overall, 202 of 341 eligible caregivers completed the survey, and 59 had accompanying audio- recorded rounds. We found racial and ethnic differences in participatory behaviors: English-speaking Latinx (IRR 0.5; 95% confidence interval [CI] 0.3-0.8) Black (IRR 0.6; 95% CI 0.4-0.8), and Spanish-speaking Latinx caregivers (IRR 0.3; 95% CI 0.2-0.5) participated less than white caregivers. Coder-rated global ratings of medical team respect and partnership were lower for Black and Spanish-speaking Latinx caregivers than white caregivers (respect 3.1 and 2.9 vs 3.6, P values .03 and .04, respectively: partnership 2.4 and 2.3 vs 3.1, P values .03 and .04 respectively). In surveys, Spanish-speaking caregivers reported lower subjective communication quality in several domains. CONCLUSIONS: In this study, Black and Latinx caregivers were treated with less partnership and respect than white caregivers.