Sarah Scollon1, Mary A Majumder2, Katie Bergstrom3, Tao Wang4, Amy L McGuire5, Jill O Robinson6, Amanda M Gutierrez7, Caroline H Lee8, Susan G Hilsenbeck9, Sharon E Plon10, D Williams Parsons11, Richard L Street12. 1. Department of Pediatrics, Baylor College of Medicine, 1 Baylor Plaza, Houston, TX 77030, United States. Electronic address: sxscollo@txch.org. 2. Center for Medical Ethics and Health Policy, Baylor College of Medicine, 1 Baylor Plaza, Suite 310D, Houston, TX 77030, United States. Electronic address: majumder@bcm.edu. 3. Department of Pediatrics, Baylor College of Medicine, 1 Baylor Plaza, Houston, TX 77030, United States. Electronic address: klbergst@txch.org. 4. Dan L Duncan Cancer Center, Baylor College of Medicine, 6620 Main St., Houston, TX 77030, United States. Electronic address: taow@bcm.edu. 5. Center for Medical Ethics and Health Policy, Baylor College of Medicine, 1 Baylor Plaza, Suite 310D, Houston, TX 77030, United States. Electronic address: amcguire@bcm.edu. 6. Center for Medical Ethics and Health Policy, Baylor College of Medicine, 1 Baylor Plaza, Suite 310D, Houston, TX 77030, United States. Electronic address: jill.robinson@bcm.edu. 7. Center for Medical Ethics and Health Policy, Baylor College of Medicine, 1 Baylor Plaza, Suite 310D, Houston, TX 77030, United States. Electronic address: ag3@bcm.edu. 8. Rice University, 6100 Main St., Houston, TX 77005, United States. Electronic address: ch1@rice.edu. 9. Dan L Duncan Cancer Center, Baylor College of Medicine, 6620 Main St., Houston, TX 77030, United States. Electronic address: sgh@bcm.edu. 10. Department of Pediatrics, Baylor College of Medicine, 1 Baylor Plaza, Houston, TX 77030, United States; Dan L Duncan Cancer Center, Baylor College of Medicine, 6620 Main St., Houston, TX 77030, United States. Electronic address: splon@bcm.edu. 11. Department of Pediatrics, Baylor College of Medicine, 1 Baylor Plaza, Houston, TX 77030, United States. Electronic address: dwparson@bcm.edu. 12. Department of Medicine, Baylor College of Medicine, 6620 Main St., Houston, TX 77030, United States; Department of Communication, Texas A&M University, TAMU 4234, College Station, TX 77843, United States; Center for Innovation in Healthcare Quality, Effectiveness, & Safety, Michael E. DeBakey Veterans Affairs Medical Center, 2450 Holcombe Blvd., Suite 01Y, Houston, TX 77021, United States. Electronic address: r-street@tamu.edu.
Abstract
OBJECTIVE: To examine communication patterns and behaviors during disclosure of exome sequencing (ES) results to parents of pediatric cancer patients, and describe common themes in parental communication. METHODS: Using mixed methods, we analyzed transcripts of sessions where parents of pediatric cancer patients received ES results from an oncologist and genetic counselor. Seventy-six transcripts were analyzed for frequency of clinician information-giving, partnering-supportive talk, and active parent participation. A subset of 40 transcripts were analyzed using thematic content analysis. RESULTS: Disclosures consisted mostly of clinician talk (84% of total talk), which was focused on providing information (62% of clinicians' utterances) with occasional partnering-supportive talk (7% of clinicians' utterances). Most parents assumed a passive, listening role (16% of total talk). Themes in parental communication included expressing relief and the significance of an answer, concern about sharing results and responsibility for inheritance, and seeking clarification of health implications of results. CONCLUSION: Our finding of low levels of active parent participation during ES disclosures highlights the need to improve patient/parent engagement and understanding in a genetic setting. PRACTICE IMPLICATIONS: Clinician communication strategies that could encourage parent participation and understanding include checking for parent understanding, partnership-building, and tailoring ES discussions to address parent concerns and preferences.
OBJECTIVE: To examine communication patterns and behaviors during disclosure of exome sequencing (ES) results to parents of pediatric cancerpatients, and describe common themes in parental communication. METHODS: Using mixed methods, we analyzed transcripts of sessions where parents of pediatric cancerpatients received ES results from an oncologist and genetic counselor. Seventy-six transcripts were analyzed for frequency of clinician information-giving, partnering-supportive talk, and active parent participation. A subset of 40 transcripts were analyzed using thematic content analysis. RESULTS: Disclosures consisted mostly of clinician talk (84% of total talk), which was focused on providing information (62% of clinicians' utterances) with occasional partnering-supportive talk (7% of clinicians' utterances). Most parents assumed a passive, listening role (16% of total talk). Themes in parental communication included expressing relief and the significance of an answer, concern about sharing results and responsibility for inheritance, and seeking clarification of health implications of results. CONCLUSION: Our finding of low levels of active parent participation during ES disclosures highlights the need to improve patient/parent engagement and understanding in a genetic setting. PRACTICE IMPLICATIONS: Clinician communication strategies that could encourage parent participation and understanding include checking for parent understanding, partnership-building, and tailoring ES discussions to address parent concerns and preferences.
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