Department of Urology, Indiana University School of Medicine, Department of Pediatrics, USA; Center for Pediatric and Adolescent Comparative Effectiveness Research, USA.
Department of Urology, Indiana University School of Medicine, Department of Pediatrics, USA.
J Pediatr Urol. 2019 Oct;15(5):449.e1-449.e8. doi: 10.1016/j.jpurol.2019.04.017. Epub 2019 May 2.
Many parents who choose hypospadias repair for their son experience decisional conflict and regret. The utilization of a shared decision-making process may address the issue of decisional conflict and regret in hypospadias repair by engaging both parents and physicians in decision-making.
The objective of this study was to develop a theoretical framework of the parental decision-making process about hypospadias surgery to inform the development of a decision aid.
We conducted semistructured interviews were conducted with parents of children with hypospadias to explore their role as proxy decision-makers, inquiring about their emotions/concerns, informational needs, and external/internal influences. Interviews were conducted until no new themes were identified, analyzing them iteratively using open, axial, and selective coding. The iterative approach entails a cyclical process of conducting interviews and analyzing transcripts while the data collection process is ongoing. This allows the researcher to make adjustments to the interview guide as necessary based on preliminary data analysis in order to explore themes that emerge from early interviews with parents. Grounded theory methods were used to develop an explanation of the surgical decision-making process.
Sixteen mothers and one father of seven preoperative and nine postoperative patients (n = 16) with distal (8) and proximal (8) meatal locations were interviewed. Four stages of the surgical decision-making process were identified: (1) processing the diagnosis, (2) synthesizing information, (3) processing emotions and concerns, and (4) finalizing the decision (Extended Summary Figure). Core concepts in each stage of the decision-making process were identified. Primary concerns included anxiety/fear about the child not waking up from anesthesia and their inability to be present in the operating room. Parents incorporated information from the Internet, medical providers, and their social network as they sought to relieve confusion and anxiety while building trust/confidence in their child's surgeon.
The findings of this study contribute to our understanding of decision-making about hypospadias surgery as a complex and multifaceted process. The overall small sample size is typical and expected for qualitative research studies. The primary limitation of the study, however, is the underrepresentation of fathers, minorities, and same-sex couples.
This study provides an initial framework of the parental decision-making process for hypospadias surgery that will inform the development of a decision aid. Future stages of decision aid development will focus on recruitment of fathers, minorities, and same-sex couples in order to enrich the perspectives of our work.
许多选择为儿子进行尿道下裂修复的父母都经历了决策冲突和后悔。通过让父母和医生共同参与决策，可以利用共同决策过程来解决尿道下裂修复中的决策冲突和后悔问题。
本研究的目的是建立一个关于尿道下裂手术的父母决策过程的理论框架，为决策辅助工具的开发提供信息。
我们对患有尿道下裂的儿童的父母进行了半结构式访谈，以探讨他们作为代理决策者的角色，询问他们的情绪/关注点、信息需求和外部/内部影响。访谈一直进行到没有新的主题出现，使用开放式、轴向式和选择性编码对访谈进行迭代分析。迭代方法涉及在数据收集过程中进行访谈和分析转录的循环过程。这使研究人员能够根据初步数据分析对访谈指南进行必要的调整，以便从早期对父母的访谈中探索出现的主题。扎根理论方法用于解释手术决策过程。
共采访了 16 名术前和 9 名术后患者的 16 名母亲和 1 名父亲（n=16），其中 8 名患儿为远端尿道下裂，8 名为近端尿道下裂；8 名患儿尿道口位于阴茎头，8 名患儿尿道口位于阴茎根部。确定了手术决策过程的四个阶段：（1）处理诊断，（2）综合信息，（3）处理情绪和关注点，以及（4）最终决策（扩展摘要图）。在决策过程的每个阶段都确定了核心概念。主要关注点包括担心孩子麻醉后无法醒来和无法在手术室陪伴孩子。父母从互联网、医疗服务提供者和社交网络中获取信息，以减轻困惑和焦虑，同时建立对孩子外科医生的信任/信心。
本研究的结果有助于我们理解尿道下裂手术作为一个复杂而多方面的决策过程。总体而言，小样本量是定性研究的典型且预期结果。然而，本研究的主要局限性是父亲、少数民族和同性伴侣的代表性不足。
本研究提供了尿道下裂手术父母决策过程的初步框架，为决策辅助工具的开发提供信息。决策辅助工具开发的下一阶段将侧重于招募父亲、少数民族和同性伴侣，以丰富我们工作的视角。
