Communication with Children with Cancer and Their Families Throughout the Illness Journey and at the End of Life

Kaye, Erica C.; Snaman, Jennifer M.; Johnson, Liza‐Marie; Levine, Deena R.; Powell, Brent; Love, Amy; Smith, J.; Ehrentraut, Jennifer Harman; Lyman, Joanna; Cunningham, Melody J.; Baker, Justin N.

doi:10.1007/978-3-319-61391-8_4

Cited by 19 publications

(21 citation statements)

References 205 publications

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“…Disclosing to a family that there are no further curative options for their child’s disease is challenging. HCPs facilitating these conversations should be mindful of the language they choose and avoid terminology that may seem dismissive or offensive ( Table 6 ) [ 47 ]. Other team members including child life specialists and spiritual care providers may be particularly helpful for navigating these challenging discussions.…”

Section: Involving the Childmentioning

confidence: 99%

Communicating Effectively in Pediatric Cancer Care: Translating Evidence into Practice

et al. 2018

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Effective communication is essential to the practice of pediatric oncology. Clear and empathic delivery of diagnostic and prognostic information positively impacts the ways in which patients and families cope. Honest, compassionate discussions regarding goals of care and hopes for patients approaching end of life can provide healing when other therapies have failed. Effective communication and the positive relationships it fosters also can provide comfort to families grieving the loss of a child. A robust body of evidence demonstrates the benefits of optimal communication for patients, families, and healthcare providers. This review aims to identify key communication skills that healthcare providers can employ throughout the illness journey to provide information, encourage shared decision-making, promote therapeutic alliance, and empathically address end-of-life concerns. By reviewing the relevant evidence and providing practical tips for skill development, we strive to help healthcare providers understand the value of effective communication and master these critical skills.

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Section: Involving the Childmentioning

confidence: 99%

Communicating Effectively in Pediatric Cancer Care: Translating Evidence into Practice

et al. 2018

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“…Honest, clear, and empathic communication between pediatric oncologists, children with cancer, and their families is imperative to facilitating therapeutic alliance and ensuring that medical management aligns appropriately with patient and family goals of care. 1,2 Parents of children with cancer rate the communication skills of their child's oncologist as a critical component of the illness and treatment experience, 3 and parents are more likely to believe that oncologists provided high quality information when they also rate the provider's communication style highly. 4 Better communication has also been associated with parental report of increased hope, 5 decreased decisional regret, 6 and improved psychosocial outcomes.…”

Section: Introductionmentioning

confidence: 99%

“…The objectives of this review are fourfold: (1) to identify the extent and content of the evidence base within this research arena; (2) to ascertain the methodological strategies utilized in published studies on this topic; (3) to synthesize results from prior investigations; and (4) to generate recommendations for the design and implementation of future prospective research related to communication in pediatric oncology.…”

Section: Introductionmentioning

confidence: 99%

Advancing the field of communication research in pediatric oncology: A systematic review of the literature analyzing medical dialogue

Kaye

Kiefer

Zalud

et al. 2018

Pediatric Blood & Cancer

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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.

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“…1,2 For those facing high-risk or progressive disease, transparent and empathic prognostic communication is imperative for building therapeutic alliance [3][4][5] in the hopes of aligning treatment with goals of care. 6,7 Yet, the communication of highly sensitive information, particularly as it pertains to predictions of life and death, is fraught with challenges. 8 In the fields of medical and pediatric oncology, communication deficits have been described, resulting in discordance in prognostic awareness between clinicians, patients, and families.…”

Section: Introductionmentioning

confidence: 99%

“…Cancer is a devasting diagnosis that significantly impacts the physical, psychosocial, and spiritual well‐being of patients and families . For those facing high‐risk or progressive disease, transparent and empathic prognostic communication is imperative for building therapeutic alliance in the hopes of aligning treatment with goals of care . Yet, the communication of highly sensitive information, particularly as it pertains to predictions of life and death, is fraught with challenges .…”

Section: Introductionmentioning

confidence: 99%

Longitudinal investigation of prognostic communication: Feasibility and acceptability of studying serial disease reevaluation conversations in children with high‐risk cancer

Kaye

Gattas

Bluebond‐Langner

et al. 2019

Cancer

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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.

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Communication with Children with Cancer and Their Families Throughout the Illness Journey and at the End of Life

Cited by 19 publications

References 205 publications

Communicating Effectively in Pediatric Cancer Care: Translating Evidence into Practice

Communicating Effectively in Pediatric Cancer Care: Translating Evidence into Practice

Advancing the field of communication research in pediatric oncology: A systematic review of the literature analyzing medical dialogue

Longitudinal investigation of prognostic communication: Feasibility and acceptability of studying serial disease reevaluation conversations in children with high‐risk cancer

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