Sarah R Brand1, Karen Fasciano2,3, Jennifer W Mack4. 1. The Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Boston, MA, USA. SarahR_Brand@dfci.harvard.edu. 2. The Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Boston, MA, USA. 3. The Department of Psychiatry, Brigham and Women's Hospital, Boston, MA, USA. 4. The Department of Pediatric Oncology and the Center for Population Sciences, Dana-Farber Cancer Institute, Boston, MA, USA.
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 developmental factors that make pediatric patients unique, especially with regard to their patterns of communication.
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 cancerpatients 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 cancerpatients 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 developmental factors that make pediatric patients unique, especially with regard to their patterns of communication.
Authors: Meaghann S Weaver; Justin N Baker; Jami S Gattuso; Deborah V Gibson; April D Sykes; Pamela S Hinds Journal: Cancer Date: 2015-09-08 Impact factor: 6.860
Authors: Eden G Robertson; Claire E Wakefield; Joanne Shaw; Anne-Sophie Darlington; Brittany C McGill; Richard J Cohn; Joanna E Fardell Journal: Support Care Cancer Date: 2019-03-18 Impact factor: 3.603
Authors: Julia Gray Farber; Mary G Prieur; Christine Roach; Rosemary Shay; Michelle Walter; Drucy Borowitz; Elisabeth P Dellon Journal: Pediatr Pulmonol Date: 2018-03-12
Authors: Deena R Levine; Erik Liederbach; Liza-Marie Johnson; Erica C Kaye; Holly Spraker-Perlman; Belinda Mandrell; Michele Pritchard; April Sykes; Zhaohua Lu; Dave Wendler; Justin N Baker Journal: Cancer Date: 2019-01-02 Impact factor: 6.860