James M. Anderson Center for Health Systems Excellence, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA.
Division of Human Genetics, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA.
J Empir Res Hum Res Ethics. 2023 Oct;18(4):278-283. doi: 10.1177/15562646231190826. Epub 2023 Jul 25.
To understand whether they found a two-step decision process helpful and why, adolescent-parent dyads participating in a study investigating return of genomic testing results were asked about their decision-making experience. Responses were qualitatively coded and analyzed using thematic analysis. Adolescents and parents found both joint and independent decision-making stages helpful. Regarding independent decision-making, adolescents appreciated exercising independence, while parents valued both adolescent and parental independence. Joint decision-making allowed each to hear the other's viewpoints. Some found joint decision-making irrelevant but recognized it might help others. Overall, adolescents and parents had similar reasons for finding the two-step decision-making process helpful. Our findings support using such a process for engaging parents and adolescents in challenging research and clinical decisions.
为了了解他们是否认为两步决策过程有帮助，以及原因是什么，参与一项研究调查基因组检测结果返回的青少年-父母二人组被要求描述他们的决策经验。使用主题分析对回复进行定性编码和分析。青少年和父母都认为两个阶段的决策都有帮助。关于独立决策，青少年喜欢行使独立性，而父母则重视青少年和父母双方的独立性。联合决策使每个人都能听到对方的观点。有些人发现联合决策不相关，但认识到它可能对其他人有帮助。总的来说，青少年和父母对两步决策过程有帮助的原因相似。我们的研究结果支持使用这种方法来帮助父母和青少年参与具有挑战性的研究和临床决策。
