How we approach sharing child-caregiver PRO disagreement.

Researchers use patient-reported outcomes (PRO) to capture the patient experience, and in pediatrics, parent report of symptom and function often accompanies the child's assessment. Children with cancer and their family caregivers frequently evaluate symptom burden and functional status differently. Child-caregiver PRO disagreement often worries pediatric oncology clinicians, who do not know how to best approach sharing it with families. Openly discussing differences in symptom and functional status reporting is a crucial element of supporting families and can improve family harmony throughout the child's illness journey. This paper offers strategies and language for communicating with families about PRO disagreement.

Navigating prognostic communication when children with poor-prognosis cancer experience prolonged disease stability.

BACKGROUND: Most pediatric patients and families want clear prognostic information across the illness course. Yet when children with poor-prognosis cancer experience prolonged disease stability, uncertainty can make communication particularly challenging. In this study, we aimed to (i) assess how frequently oncologists communicate about prognosis when high-risk cancer does not progress, and (ii) describe prognostic communication patterns in the context of disease stability. PATIENTS AND METHODS: In this prospective, longitudinal, mixed-methods study, we audio-recorded serial disease re-evaluation conversations between children with poor-prognosis cancer, their families, and their primary oncologists. For this secondary analysis, we conducted content analysis across serial conversations among 16 patient-parent-oncologist triads for whom the patient's disease remained stable over the 24-month study period. RESULTS: Prognostic communication was absent in >50% of recorded conversations. Overall, it comprised only 4% of dialog time, nearly 90% of which was dialog about prognostic uncertainty; discussion of curability occurred infrequently. Three distinct patterns for prognostic communication emerged: (a) "Don't know" statements, avoiding or deferring prognostication; (b) "Worry" statements, preparing families for possible future disease progression; and (c) relief-caveat statements, celebrating disease stability while balancing positivity with caution. CONCLUSIONS: Oncologists seldom talked about prognosis with high-risk patients during periods of disease stability; yet when they did, they used thoughtful and effective strategies to prepare families for possible future disease progression. Further research is needed to better understand if, how, and when patients and families with stable disease who are high risk for future disease progression prefer to receive information about prognosis.

Mismatch between Pediatric Oncologists' Private and Parent-Facing Prognostic Communication: Communication Patterns Used to Soften Prognostic Disclosure.

Purpose: Most parents of children with cancer desire honest prognostic communication, yet oncologists often avoid clear prognostic disclosure. This study explored differences between oncologists' private assessments of prognosis and their prognostic communication with patients and parents. Patients and Methods: In this prospective, longitudinal, mixed-methods study, we audio-recorded serial disease reevaluation conversations between children with advancing cancer, parents, and primary oncologists and separately surveyed and interviewed oncologists at disease progression time points. At time points when oncologists privately described curability as ≤10%, content analysis was used to compare prognostic language in recorded dialogue with private responses about prognosis. Results: Of 33 enrolled patient-parent dyads, 17 patients with high-risk cancer under the care of 6 primary oncologists experienced disease progression during the study period. In 95% of oncologist interviews at disease progression time points, oncologists either predicted curability to be ≤10% or incurable. In most interviews (82%), oncologists stated unequivocally that chances of cure were ≤10%, yet did not communicate these low odds during recorded discussions at the same time point. Analysis revealed three distinct communication patterns through which oncologists softened prognostic disclosure to patients and families: (1) space-holding for hope of cure: statements acknowledging difficult prognosis yet leaving room for possibility of cure; (2) vague warning: statements implying that cancer may progress without offering specifics; and (3) data without interpretation: statements describing disease progression findings in detail without explaining what this meant for the patient's future life or survival. Conclusion: Pediatric oncologists often temper their assessment of poor prognosis when speaking with patients and families. Future work should explore serious conversation guides and other clinical interventions aimed at encouraging person-centered prognostic disclosure for patients with advancing cancer and their families.

Oncologist approaches to communicating uncertain disease status in pediatric cancer: a qualitative study.

BACKGROUND: Most patients with cancer and their caregivers desire honest, clear prognostic communication, yet oncologists often disclose prognosis inconsistently. Prognostic communication becomes even more challenging when disease progression is unclear or equivocal. Presently, oncologist approaches for discussing uncertain disease findings are poorly understood. METHODS: In this prospective, longitudinal study, we audio-recorded serial disease reevaluation conversations between children with high-risk cancer, their families, and their primary oncologists over 24 months and conducted content analysis at recorded timepoints when oncologists categorized disease progression as equivocal. RESULTS: Of the 265 medical discussions recorded across the illness course for 33 patient-parent dyads, a total of 40 recorded discussions took place at equivocal timepoints, comprising > 500 min of medical dialogue. Prognosis talk encompassed < 3% of dialogue and was absent in nearly half of equivocal discussions (17/40, 42.5%). Curability statements were identified in only two conversations. Inductive content analysis of dialogue revealed four distinct patterns for communicating equivocal disease status: (1) up-front reassurance, (2) softening the message, (3) describing possible disease progression without interpretation, (4) expressing uncertainty without discussing the bigger picture. CONCLUSION: Oncologists rarely discuss prognosis with children with high-risk cancer and their families at timepoints when disease progression is not definitive. Formal guidance is needed to better support oncologists in navigating uncertainty while sharing honest, person- and family-centered information about prognosis.

Novel approaches to communication skills development: The untapped potential of qualitative research immersion.

Objective: Participation in qualitative research, particularly analysis of recorded medical dialogue, offers real-time, longitudinal immersion that can strengthen clinical trainee communication skills. The study objective was to explore how qualitative research participation impacts clinical trainees' self-perceived communication skills development and practice. Methods: In this study, a 17-member multidisciplinary working group of child life specialists, advanced practice providers, undergraduate/medical students, residents, fellows, attending physicians, social scientists, and career researchers with recent qualitative and communication research experience assembled to discuss this topic using a structured discussion guide. Content analysis was used to identify concepts and themes. Results: Three key themes characterizing the impact of qualitative research participation on aspiring clinicians' communication skills development and practice arose - the 3Cs: (1) Connection, therapeutic alliance, and accompaniment; (2) Clarity and prognostic communication; (3) Compassion, empathy, and understanding. Participants emphasized that qualitative research learning improved their understanding of patient/family lived experiences, preparing them for future clinical encounters, strengthening their emotional intelligence, and promoting self-care, resilience, and professional affirmation. Conclusions: Immersion in clinical communication through participation in qualitative research is an under-utilized resource for supporting clinical trainees in communication skills development. Innovation: The process of collaborative knowledge production through the collective exploration of an a priori question related to group members' collective experiences is methodologically innovative. Further, re-thinking qualitative research participation as an underutilized educational opportunity is pedagogically novel, and leaders in medical education and qualitative research should collaborate to realize the potential of this teaching tool.

Community Hospice Nurses' Perspectives on Needs, Preferences, and Challenges Related to Caring for Children With Serious Illness.

Importance: Many of the 50 000 children who die annually are eligible for provision of community-based hospice care, yet few hospice organizations offer formal pediatric services. Population-level data demonstrate that hospice nurses lack training, experience, and comfort in caring for children, but their specific educational needs and preferences are poorly understood. Objective: To assess the pediatric-specific training and support needs of hospice nurses caring for children in the community. Design, Setting, and Participants: For this qualitative study, 41 nurses were purposively seletected from a population-level cohort of 551 hospice nurses who completed a previous mixed-methods survey; these 41 nurses participated in semistructured interviews between February and April 2019. Hospice nurses were recruited from all accredited hospice organizations in Tennessee, Mississippi, and Arkansas that offer care to pediatric patients. Content analysis of interview transcripts was conducted. Main Outcomes and Measures: The interview guide probed for topics related to prior pediatric hospice training experiences, desires and preferences for training, and perceived barriers to training. Results: Interviews were conducted with 41 nurses representing different geographic regions and levels of comfort with pediatric hospice provision (as self-reported in the prior survey). Thirty-eight of the nurses were women (92.7%), with a median age of 40-49 years (range, 20-29 to ≥60 years) and median tenure of 5-9 years (range, <1 to ≥20 years) as a hospice nurse. Respondents included 1 American Indian or Alaska Native nurse (2.4%), 1 Black nurse (2.4%), and 39 White nurses (95.1%). Across interviews, most hospice nurses reported feeling uncomfortable caring for children with serious illness, and all nurses used language to express the immediacy behind the need for pediatric-specific training and support. Nurses explained why further training and support are needed and clear preferences for who should provide the education, educational modalities, and specific training topics. Nurses also articulated barriers to training and support opportunities and proposed innovative suggestions for overcoming these challenges. Notably, nurses emphasized the need for connection with experts, a sense of community, and solidarity to support frontline clinicians providing end-of-life care to children in the community. Conclusions and Relevance: In this qualitative study, community hospice nurses expressed an urgent need for improvements in pediatric-specific training opportunities and support, clear preferences for how education should be provided, and recommendations for circumventing barriers to training. These findings are a call to action for the palliative care community to collaborate in rapid implementation of educational programs and networks to systematically support hospice nurses caring for children in the community.

"Still Caring for the Family": Condolence Expression Training for Pediatric Residents.

CONTEXT: Insufficient communication from the medical team following a child's death may compound parental grief. Pediatric residents care for children who die, yet the landscape of condolence expression education within residency programs has not been studied. OBJECTIVES: The objective of this study was to evaluate pediatric residents' levels of experience and comfort with condolence expression and to assess their needs and desires for training in condolence expression. METHODS: A cross-sectional, mixed-methods survey was developed by palliative care clinicians in collaboration with bereaved parents. In 2020, following pilot testing, an electronic survey measuring resident experience with, comfort with, and training on condolence expression was distributed to 202 third-year pediatric residents across 17 Accreditation Council for Graduate Medical Education-accredited programs representing varying sizes and geographic regions. RESULTS: Ten percent of pediatric residents surveyed reported having training on condolence expression. Almost all residents considered condolence expression to be beneficial for bereaved families and most for clinicians, too, yet very very few had formally expressed condolences in their roles as physicians: 83.1% had never written a condolence letter; 85% had never made a condolence phone call; and 90.5% had never attended a memorial event. Commonly reported barriers to condolence expression included lack of experience and training, as well as concern about upsetting families. CONCLUSIONS: Pediatric residents lack comfort with and training in condolence expression and desire education to address these gaps. These findings should inform development and investigation of educational resources and training opportunities for residents to learn and practice compassionate provision of condolences to grieving families.

"You Have Made All the Loving Choices": Good Parent Praise in Pediatric Critical Care Conferences.

BACKGROUND AND OBJECTIVES: Parents' ideas about what it means to be a "good parent" to their seriously ill child influence parental decision-making. Little is known about when, why, and how clinicians offer good-parent praise or how parents react. Our objective was to describe clinicians' spontaneous use of good-parent praise statements to parents during PICU care conferences and how parents respond. METHODS: Single-center, cross-sectional review of 72 transcripts of audio-recorded PICU care conferences in a quaternary medical center. Qualitative analysis was conducted to code triggers for clinician good-parent statements and parent responses. RESULTS: Clinicians made at least one statement of good-parent praise in 32% of family conferences. Triggers for clinician statements of good-parent praise were categorized into 6 themes: decision making, gratitude to the clinical team, defense of parenting, parental body language, parental guilt, and intention to close the meeting. Parental responses to clinician statements of good-parent praise fell into 6 themes: acknowledgment, medical talk, deepening of feelings expressed in conversation, focusing on a decision, redirecting on the patient, and gratitude. CONCLUSIONS: Clinicians spontaneously praised parents for their role in being a good parent in less than one-third of family conferences. Clinician statements were triggered by verbal and nonverbal parental behaviors, a critical decision-making point in the conversation, and an intention to close the meeting. In response, parents frequently responded positively to the praise and often returned the gratitude or reflected on their feelings about caregiving for their child.

Problems with the problem list: challenges of transparency in an era of patient curation.

In recent years, the OpenNotes movement and other changes in healthcare have driven institutions to make medical records increasingly transparent. As patients have begun to question and request changes to their Problem Lists, clinicians have come to face the ever more frequent challenge of discerning which changes to make and which to refuse. Now clinicians and patients together choose the list of problems that represent the patient's current state of health and illness. As the physician's role slides closer to consultant and the medical paternalism of the twentieth century falls further into the background of our technology-infused present, who holds the power of delineating a patient's clinical identity? This paper examines the ethical and practical dimensions of this question and proposes a research agenda that aims to answer it. Such explorations are essential to ensuring that the physician remains relevant to patient's notions of health, illness, intervention, and healing.