TY - JOUR
T1 - Characteristics of uncertainty in advanced pediatric cancer conversations
AU - Sisk, Bryan A.
AU - Friedrich, Annie B.
AU - DuBois, James
AU - Mack, Jennifer W.
N1 - Funding Information:
This work was supported by the National Palliative Care Research Center [Pilot and Exploratory Grant], and by the National Center for Advancing Translational Sciences of the National Institutes of Health under Award Number [UL1 TR002345].
Publisher Copyright:
© 2020 Elsevier B.V.
PY - 2021/5
Y1 - 2021/5
N2 - Objectives: To describe the initiation, response, and content of communication about uncertainty in advanced pediatric cancer. Methods: Qualitative analysis of 35 audio-recorded outpatient consultations between physicians and families of children whose cancer recently progressed. We defined uncertainty as “future-oriented lack of clarity in which answers are unknown to all participants involved in the conversation.” Results: Conversations contained a median of 14 (interquartile range 8.5–19) uncertainty statements related to 6 topics: appropriateness of treatments, acute toxicities and morbidities, prognosis or response to treatment, diagnostic uncertainty, logistical uncertainty, and long-term toxicities. Physicians initiated 63 % of statements (303/489), parents initiated 33 % (165/489), and children initiated 2% (10/489). We identified 14 unique responses to uncertainty: 11 responses provided space for discussion, 3 responses reduced space. Physicians most commonly responded by providing additional information (38 %, 361/947). Parents most often responded with continuing statements, such as “um” or “yeah” (50 %, 313/622). Children seldom responded (<1%, 12/1697). Conclusion: Physicians initiated most uncertainty discussions, and their responses often provided space for further discussion. Children were seldom involved in these conversations. Practice implications: Clinicians should consider maintaining open conversations about uncertainties in advanced pediatric cancer, and consider engaging children in these discussions.
AB - Objectives: To describe the initiation, response, and content of communication about uncertainty in advanced pediatric cancer. Methods: Qualitative analysis of 35 audio-recorded outpatient consultations between physicians and families of children whose cancer recently progressed. We defined uncertainty as “future-oriented lack of clarity in which answers are unknown to all participants involved in the conversation.” Results: Conversations contained a median of 14 (interquartile range 8.5–19) uncertainty statements related to 6 topics: appropriateness of treatments, acute toxicities and morbidities, prognosis or response to treatment, diagnostic uncertainty, logistical uncertainty, and long-term toxicities. Physicians initiated 63 % of statements (303/489), parents initiated 33 % (165/489), and children initiated 2% (10/489). We identified 14 unique responses to uncertainty: 11 responses provided space for discussion, 3 responses reduced space. Physicians most commonly responded by providing additional information (38 %, 361/947). Parents most often responded with continuing statements, such as “um” or “yeah” (50 %, 313/622). Children seldom responded (<1%, 12/1697). Conclusion: Physicians initiated most uncertainty discussions, and their responses often provided space for further discussion. Children were seldom involved in these conversations. Practice implications: Clinicians should consider maintaining open conversations about uncertainties in advanced pediatric cancer, and consider engaging children in these discussions.
KW - Communication
KW - Pediatric oncology
KW - Physician-patient relationship
KW - Psychosocial oncology
KW - Supportive care
KW - Uncertainty
UR - http://www.scopus.com/inward/record.url?scp=85093915419&partnerID=8YFLogxK
U2 - 10.1016/j.pec.2020.10.006
DO - 10.1016/j.pec.2020.10.006
M3 - Article
C2 - 33109428
AN - SCOPUS:85093915419
SN - 0738-3991
VL - 104
SP - 1066
EP - 1074
JO - Patient Education and Counseling
JF - Patient Education and Counseling
IS - 5
ER -