Communication preferences of pediatric cancer patients: talking about prognosis and their future life

Abstract

Purpose-The American Academy of Pediatrics recommends that healthcare providers communicate information to patients in a truthful and developmentally appropriate manner. However there is limited guidance about how to translate these recommendations into clinical practice. The aim of this study was to explore how young cancer patients experienced communication around their illness, especially communication about possible outcomes from disease or treatment.Methods-Participants included young people ages 8 to under 18 years with cancer (N=16). Semi-structured interviews focused on their expectations about the future, the process of information exchange, and their preferences for communication within the pediatric oncology setting.Results-Overall, participants wanted medical information to be provided to them by their healthcare providers and wanted to be direct participants in medical conversations. However, many participants displayed some ambivalence or conveyed conflicting wishes for prognostic information. For example, some participants reported that they were satisfied with what they knew, but later raised lingering questions. While not the focus of the study, almost every participant discussed social concerns as a key concern for their present and future life.Conclusions-While most pediatric cancer patients want to be involved in conversations about their cancer care, including conversations about prognosis, this is an individual and sometimes fluctuating decision, and healthcare providers should be encouraged to discuss preferences for involvement with patients and families. This study highlights the importance of understanding the HHS Public Access

Communication during childhood cancer: Systematic review of patient perspectives

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“…24 Some wanted comprehensive data regarding therapeutic options; others felt safer knowing only "the basics" 9 as "bystanders." 21,41,46 Control over own life 21,41,46 Control over own life…”

“…• I didn't want to know much about my condition. What if there is knew I had the information, and my parents were behind me, and my doctors were all telling me they wouldn't lie to me and they would tell me the whole truth and nothing but the truth 46. • They can explain.…”

Adolescent patient involvement in discussions about relapsed or refractory cancer with oncology clinicians

“…This is particularly important as studies show discrepancies between adolescent patients, parents, and clinicians about the adolescent's desired extent of involvement in treatment‐related decisions . While it is possible that some clinicians may have previously discussed communication preferences with adolescents prior to the audio‐recorded conversations, we argue that clinicians should frequently reassess preferences and degree of desired involvement as these often change over time, and may be influenced by a patient's comfort with the medical environment, changing relationship with care team, state of health, growing maturity, and nature of the decisions to be discussed . We also found that the quality of adolescent response and overall engagement seemed to be influenced by the nature of clinician prompting.…”

“What if?”: Addressing uncertainty with families

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