Assume It Will Break: Parental Perspectives on Negative Communication Experiences in Pediatric Oncology. Issue 6 (June 2021)

• Record Type: Journal Article
• Authors: Sisk, Bryan A.; Zavadil, Jessica A.; Blazin, Lindsay J.; Baker, Justin N.; Mack, Jennifer W.; DuBois, James M.
• Is Part Of: JCO oncology practice. Volume 17:Issue 6(2021)
• Publication Date: 2021-06
• Subjects: Oncology -- Periodicals; Medical Oncology; Neoplasms; Oncology; Periodicals; 616.994
• DOI: 10.1200/OP.20.01038
• Languages: English
• ISSNs: 2688-1527

Abstract

Abstract : PURPOSE: Communication breakdowns in pediatric oncology can have negative consequences for patients and families. A detailed analysis of these negative encounters will support clinicians in anticipating and responding to communication breakdowns. METHODS: Semistructured interviews with 80 parents of children with cancer across three academic medical centers during treatment, survivorship, or bereavement. We analyzed transcripts using semantic content analysis. RESULTS: Nearly all parents identified negative communication experiences (n = 76). We identified four categories of contributors to negative experiences: individual (n = 68), team (n = 26), organization (n = 46), and greater health care system (n = 8). These experiences involved a variety of health care professionals across multiple specialties. Parents reported 12 personal consequences of communication breakdowns: emotional distress (n = 65), insufficient understanding (n = 48), decreased trust or confidence (n = 37), inconvenience (n = 36), medical harm (n = 23), decreased self-confidence (n = 17), decreased emotional support (n = 13), decreased engagement (n = 9), false hope (n = 9), decreased hope (n = 7), financial insult (n = 7), and decreased access to resources (n = 3). We identified five categories of supportive responses from clinicians: exploring (n = 8), acknowledging (n = 17), informing (n = 27), adapting (n = 27), and advocating (n = 18). Parents often increased their own advocacy on behalf of their child (n = 47). Parents also identified the need for parental engagement in finding solutions (n = 12). Finally, one parent suggested that clinicians should assume that communication will fail and develop contingency plans in advance. CONCLUSION: Communication breakdowns in pediatric oncology negatively affect parents and children. Clinicians should plan for communication breakdowns and respond by exploring, acknowledging, informing, adapting, advocating, and engaging parents in finding solutions.