Discipline of Pediatrics, School of Women's and Children's Health, UNSW Sydney, Kensington, NSW, Australia.
Behavioural Sciences Unit, Kids Cancer Centre, Sydney Children's Hospital, Randwick, NSW, Australia.
Support Care Cancer. 2019 Nov;27(11):4331-4340. doi: 10.1007/s00520-019-04728-x. Epub 2019 Mar 18.
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.
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.
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.
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.
很少有研究涉及癌症患儿的家庭做出治疗决策的方式，以及我们如何满足父母和年轻人的决策参与需求。我们旨在探讨儿科肿瘤学中父母和青少年对做出医疗决策的看法和看法。
我们对过去 12 个月内被诊断患有癌症的 25 名儿童的父母和过去 12 个月内被诊断患有癌症的 5 名青少年进行了半结构化访谈。我们的访谈大纲以 Elwyn 和 Miron-Shatz 的决策模型为基础。该模型承认决策的审议（做出决定的过程）和确定（做出选择）阶段。我们进行了主题分析。
我们的研究结果表明，提供信息不足以促进父母的决策参与。许多父母寻求额外的信息来满足他们的个人需求和偏好。虽然许多父母和年轻人希望参与决策，但他们信任医生做出治疗决策。痛苦、不足和缺乏选择的感觉影响了决策参与。尽管如此，我们研究中的许多父母对治疗决策感到满意，但这在很大程度上取决于积极的治疗结果。
我们的研究有助于了解癌症患儿的家庭如何做出治疗决策。家庭往往依赖医生做出治疗决策，但通常会寻求额外的信息来帮助他们参与决策过程。研究结果表明，儿科肿瘤学中的决策制定应侧重于让家庭参与审议阶段，而不仅仅是确定选择。
