Decision-making in childhood cancer: parents’ and adolescents’ views and perceptions

• Published in: Supportive care in cancer 2019-11, Vol.27 (11), p.4331-4340
• Main Authors: Robertson, Eden G., Wakefield, Claire E., Shaw, Joanne, Darlington, Anne-Sophie, McGill, Brittany C., Cohn, Richard J., Fardell, Joanna E.
• Format: Article
• Language: English
• Subjects: Adult; Analysis; Cancer; Care and treatment; Childhood; Clinical decision making; Decision Making; Family; Female; Humans; Male; Medicine; Medicine & Public Health; Middle Aged; Neoplasms - psychology; Nursing; Nursing Research; Oncology; Oncology, Experimental; Original Article; Pain Medicine; Parents & parenting; Pediatrics; Qualitative Research; Rehabilitation Medicine; Teenagers; Youth
• ISSN: 0941-4355; 1433-7339
• DOI: 10.1007/s00520-019-04728-x

Purpose Few studies have addressed the way in which families of children with cancer make treatment decisions, and how we can meet parents’ and young peoples’ decisional involvement needs. We aimed to explore parents’ and adolescents’ views and perceptions of making medical decisions in pediatric oncology. Methods We conducted semi-structured interviews with 25 parents of children diagnosed with cancer in the past 12 months, and 5 adolescents diagnosed in the past 12 months. Our interview schedule was underpinned by Elwyn and Miron-Shatz’s decision-making model. The model acknowledges the deliberation (process of coming to a decision) and determination (making a choice) phases of decision-making. We conducted a thematic analysis. Results Our findings indicate that information provision is not enough to facilitate parents’ decision-making involvement. Many parents sought additional information to meet their individual needs and preferences. While many parents and young people desired decisional involvement, they trusted the doctors to make treatment decisions. Feelings of distress, inadequacy, and lack of choice impacted decision-making participation. Regardless, many parents in our study were satisfied with treatment decisions, but this was largely dependent on positive treatment outcomes. Conclusion Our study contributes to understanding how families of a child with cancer make treatment decisions. Families tend to rely on doctors to make treatment decisions, but often seek additional information to help them feel involved in the decision process. Findings highlight that decision-making in pediatric oncology should focus on involving families in the deliberation phase, rather than just determination of choice.