BACKGROUND AND OBJECTIVES: Parents of children with cancer perceive deficits in quality of prognostic communication. How oncologists disclose information about disease progression and incurability and how prognostic communication impacts parental understanding of prognosis are poorly understood. In this study, we aimed to (1) characterize communication strategies used by pediatric oncologists to share prognostic information across a child’s advancing illness course and (2) explore relationships between different communication approaches and concordance of oncologist-parent prognostic understanding. METHODS: In this prospective, longitudinal, mixed-methods study, serial disease reevaluation conversations were audio recorded across an advancing illness course for children with cancer and their families. Surveys and interviews also were conducted with oncologists and caregivers at specific time points targeting disease progression. RESULTS: Seventeen children experienced advancing illness on study, resulting in 141 recordings (40 hours). Fewer than 4% of recorded dialogue constituted prognostic communication, with most codes (77%) occurring during discussions about frank disease progression. Most recordings at study entry contained little or no prognosis communication dialogue, and oncologists rated curability lower than parents across all dyads. Parent-oncologist discordance typically was preceded by conversations without incurability statements; ultimately, concordance was achieved in most cases after the oncologist made direct statements about incurability. Content analysis revealed 3 distinct patterns (absent, deferred, and seed planting) describing the provision of prognostic communication across an advancing pediatric cancer course. CONCLUSIONS: When oncologists provided direct statements about incurability, prognostic understanding appeared to improve. Further research is needed to determine optimal timing for prognostic disclosure in alignment with patient and family preferences.

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Historically, communication research in pediatric oncology has relied on surveys and interviews, resulting in cross-sectional and retrospective studies constrained by selection, recognition, and recall biases. This systematic review identifies and synthesizes the published literature analyzing primary data from recorded conversations between pediatric oncologists, patients with cancer, and their families, with the following objectives: (1) to identify the extent and content of the evidence base, (2) to describe methodological strategies utilized in the analysis of recorded medical dialogue, (3) to aggregate salient findings, and (4) to generate recommendations for future prospective research related to analysis of medical dialogue in pediatric oncology.

BackgroundProspective investigation of medical dialogue is considered the gold standard in prognostic communication research. To the authors' knowledge, the achievability of collecting mixed methods data across an evolving illness trajectory for children with cancer is unknown.MethodsThe objective of the current study was to investigate the feasibility and acceptability of recording sequential medical discussions at disease reevaluation time points for children with high‐risk cancer. Mixed methods data (ie, surveys, interviews, checklists, and chart reviews) corresponding to each disease reevaluation conversation also were captured in real‐time for 34 patients across 24 months at an academic pediatric cancer center.ResultsAll eligible oncology clinicians (65 of 65 clinicians; 100%) and the majority of eligible patient/parent dyads (34 of 41 dyads; 82.9%) enrolled on the study; of 200 disease reevaluation discussions, 185 discussions (92.5%) were recorded, totaling >3300 minutes of recorded medical dialogue. Longitudinal data were captured for 31 of 34 patient/parent dyads (91.2%). The vast majority of study materials were completed, including 138 of 139 nonverbal communication checklists (99.3%), all 49 oncologist surveys (100%), 40 of 49 parent surveys (81.6%), all 34 oncologist interviews (100%), and 24 of 34 parent interviews (70.6%). Only 1 parent reported participation to be a “very” distressing experience, no parents believed that their level of distress warranted speaking with a psychosocial provider, and the majority of parents (18 of 29 parents; 62.1%) described study participation as “somewhat” or “very” useful to them.ConclusionsThe prospective, longitudinal investigation of prognostic communication using a mixed methods approach appears to be feasible and acceptable to clinicians, patients, and families. The study of sensitive content can be accomplished without causing undue participant burden or harm, thereby enabling further advancement of communication research.

Background: Children with serious illness who receive hospice care often interface with nurses who lack training, experience and comfort in the provision of paediatric palliative and hospice care. Hospice nurse preferences for paediatric-specific training are not well known. Aim: To describe the types of paediatric-specific training received and educational content preferred by hospice nurses. Design: Population-level dissemination of a cross-sectional survey with qualitative analysis of open-ended survey items. Setting/participants: Nurses from 71 community-based hospice organizations across 3 states completed the survey. Results: An open-ended response was provided by 278/551 (50.5%) survey respondents. A total of 55 respondents provided 58 descriptions of prior paediatric-specific training, including a formal 2-day course ( n = 36; 65.5%), on-the-job education ( n = 13, 23.6%), online training ( n = 5, 9.1%), nursing school ( n = 2, 3.6%) and paediatric advanced life support courses ( n = 2, 3.6%). A total of 67 respondents described 74 hospice-led educational efforts, largely comprised of a 2-day course ( n = 39; 54.2%) or provision of written materials ( n = 11; 15.3%). A total of 189 respondents described 258 preferences for paediatric-specific training, with nearly half ( n = 93; 49.2%) requesting ‘any’ or ‘all’ types of education and the remainder requesting education around medication use ( n = 48; 25.4%), symptom assessment/management ( n = 32; 16.9%), pain assessment/management ( n = 28; 14.8), communication ( n = 29; 15.3%) and psychosocial assessment/management ( n = 28; 14.8). Conclusions: Hospice nurses self-report inadequate exposure to educational resources and programs, in conjunction with a strong desire for increased paediatric-specific training. Identification of targetable gaps should inform the development of educational resources, policies and other supportive interventions to improve delivery of care to children and families in the community.