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. Prognostic discordance was defined as a difference of ≥2 response options and was considered moderate (difference of 2-3 response options) or high (difference of 4-5 response options). Responses were categorized as differences in belief and/or differences in understanding using an existing paradigm. RESULTS: Forty parent-physician dyads of 28 infants completed surveys. Parent-physician discordance about prognosis occurred in ≥1 domain in the majority of dyads (n = 28/40, 70%). Discordance was generally moderate in degree (n = 23/28, 82%) and occurred with similar frequency across all domains. Of parent-physician dyads with discordance, the majority contained a difference in understanding in at least 1 domain (n = 25/28, 89%), while a minority contained a difference of belief (n = 6/28, 21%). When discordance was present, parents were typically more optimistic in their predictions compared with physicians (n = 25/28, 89%). CONCLUSIONS: Differing perceptions about the prognosis of critically ill infants are common and due to differences in both understanding and belief. These findings can be used to develop targeted interventions to improve prognostic communication.

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.

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.

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. Patients were enrolled from September 2018 to September 2020, and infants were followed up longitudinally throughout their hospitalization. Participants included families of infants with neurologic conditions who were hospitalized in the intensive care unit and had a planned family meeting to discuss neurologic prognosis or starting, not starting, or discontinuing life-sustaining treatment. Family meetings were recorded, transcribed, and deidentified before being screened for discussion of death. Main Outcomes and Measures: The main outcome was the language used to reference death during family meetings between parents and clinicians. Conventional content analysis was used to analyze data. Results: A total of 68 family meetings involving 36 parents of 24 infants were screened; 33 family meetings (49%) involving 20 parents (56%) and 13 infants (54%) included discussion of death. Most parents involved in discussion of death identified as the infant's mother (13 [65%]) and as Black (12 [60%]). Death was referenced 406 times throughout the family meetings (275 times by clinicians and 131 times by family members); the words die, death, dying, or stillborn were used 5% of the time by clinicians (13 of 275 references) and 15% of the time by family members (19 of 131 references). Four types of euphemisms used in place of die, death, dying, or stillborn were identified: (1) survival framing (eg, not live), (2) colloquialisms (eg, pass away), (3) medical jargon, including obscure technical terms (eg, code event) or talking around death with physiologic terms (eg, irrecoverable heart rate drop), and (4) pronouns without an antecedent (eg, it). The most common type of euphemism used by clinicians was medical jargon (118 of 275 references [43%]). The most common type of euphemism used by family members was colloquialism (44 of 131 references [34%]). Conclusions and Relevance: In this qualitative study, the words die, death, dying, or stillborn were rarely used to refer to death in family meetings with clinicians. Families most often used colloquialisms to reference death, and clinicians most often used medical jargon. Future work should evaluate the effects of euphemisms on mutual understanding, shared decision-making, and clinician-family relationships.

Prognostic Discussion for Infants with Neurologic Conditions: Qualitative Analysis of Family Conferences.

OBJECTIVE: We characterize the content and role of prognostic discussion for infants with neurologic conditions. METHODS: In this descriptive qualitative study, we prospectively enrolled infants (age < 1 year) in the intensive care unit with a neurologic condition anticipated to have ≥1 family conference about prognosis or goals of care. We audiorecorded family conferences as they occurred. We used a rapid-cycle qualitative approach to identify and refine themes. RESULTS: Forty infants and 61 parents were enrolled; 68 family conferences occurred for 24 infants. The majority of infant cases (n = 23/24, 96%) and conferences (n = 64/68, 94%) included discussion of neurologic prognosis. Common infant diagnoses included prematurity (n = 12, 52%), genetic conditions (n = 9, 35%), and brain malformations (n = 7, 30%). We identified 2 themes relating to the characterization of the infant's prognosis: (1) predictions of impairment and (2) rationale for prognostic predictions. We identified 3 themes characterizing the role of prognostic discussion: (1) aligning parent and clinician understanding of infant outcome, (2) influencing decision-making, and (3) preparing for life at home. We identified 2 themes characterizing discussion of prognostic uncertainty: (1) multilayered types of uncertainty and (2) holding space for hope alongside uncertainty. INTERPRETATION: In this cohort of infants with neurologic conditions and their parents, we identified salient themes characterizing the content and role of discussion about neurologic outcome. Our findings highlight that prognostic discussion focuses on anticipated impairments, informs decision-making, and helps families prepare for home life. Future work should characterize whether these findings align with parent preferences for prognostic disclosure. ANN NEUROL 2022;92:699-709.

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. We enrolled 40 infants and 61 parents who participated in 68 family conferences. Thirty-seven conferences contained a treatment decision. We identified 4 key domains of the decision-making process: medical information exchange, values-based exchange, therapeutic partnership, and integration of values into decision making. Discussion of values was typically parent initiated (n = 20, 83%); approximately one-third of conferences did not contain any discussion of parent values. Integration of family values and preferences into decision making occurred in approximately half of conferences. These findings highlight opportunities for interventions that promote values discussion and the integration of values into decision making.

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. We used a directed content analysis approach to identify clinician assessments of understanding and parent responses to those assessments. Assessments were classified based on an adapted framework; responses were characterized as "absent," "yes/no," or "elaborated." RESULTS: Fifty conferences involving the care of 25 infants were analyzed; these contained 374 distinct assessments of understanding. Most (n = 209/374, 56%) assessments were partial (i.e. okay?); a minority (n = 60/374, 16%) were open-ended. When clinicians asked open-ended questions, parents elaborated in their answers most of the time (n = 55/60, 92%). Approximately three-quarter of partial assessments yielded no verbal response from parents. No conferences included a teach-back. CONCLUSIONS: Although common, most clinician assessments of understanding were partial or close-ended and rarely resulted in elaborated responses from parents. Open-ended assessments are an effective, underutilized strategy to increase parent engagement and clinician awareness of information needs. PRACTICE IMPLICATIONS: Clinicians hoping to facilitate parent engagement and question-asking should rely on open-ended statements to assess understanding.

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. Qualitative data were collected using a postclerkship survey and semi-structured focus groups. Students were asked to reflect on challenging conversations they experienced with patients and to identify the top reasons why conversations were challenging. Responses were analyzed using directed content analysis. RESULTS: A total of 159 medical students were enrolled (MS2: n = 35 [22%]; MS3: n = 97 [61%]; MS4: n = 27 [17%]). Three themes of difficulty were identified in survey and focus group data: (1) tough clinical realities: how the clinical environment makes conversations challenging; (2) communication skill needs: the difficulty of finding the words to say; and (3) navigating emotions: of patients, clinicians, and students themselves. Tough clinical realities were cited by over two-thirds of students in all years (MS2: n = 30 [86%]; MS3: n = 74 [76%]; MS4: n = 23 [85%]). Communication skills needs were cited most frequently by third-year students (MS2: n = 15 [43%]; MS3: n = 55 [57%]; MS4: n = 10 [37%]). Students early in training were more likely to cite difficulty navigating emotions (MS2: n = 28 [80%]; MS3: n = 71 [73%]; MS4: n = 19 [70%]). CONCLUSIONS: Medical students frequently observe and participate in challenging conversations with patients. Here, students identified what makes these conversations most difficult. Communication curricula should leverage clinical communication encounters, prepare students for inherent clinical realities, and help students navigate emotions in the health care setting.

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. Respondents' willingness to risk death for a cure varied widely (median 10%, 75th percentile 50%). In multivariate analyses, willingness to risk death was associated with expected long-term side effects of ART, greater financial resources and being employed (all P < 0.05) but was not associated with perceptions of how their health would improve if cured.

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. Qualitative data were analyzed using directed content analysis. Ten parents were enrolled. In family meetings, clinicians universally acknowledged the QPL and most used the QPL to guide meeting content. All parents who used the QPL found it useful and would recommend the tool to others. In interviews, parents described that the QPL offered novel questions and facilitated more prepared answers from the team. Future studies should test the impact of this QPL on parent understanding and communication quality.