Department of Medical and Molecular Genetics, Indiana University School of Medicine, Indianapolis, IN, USA.
Department of Communication Studies, Indiana University-Purdue University, Indianapolis, IN, USA.
J Genet Couns. 2021 Aug;30(4):1168-1180. doi: 10.1002/jgc4.1400. Epub 2021 Mar 15.
Genetic counseling patient letters are a valuable supplement to genetic counseling practice. As the demand for genetic services increases, improving efficiency in daily tasks such as letter writing could improve genetic counselor workflow. Additionally, understanding the value recipients place on the content of these letters prior to creating efficiencies is essential toward ensuring that the utility of these letters is not lost. To better understand parents' perceptions of the letter's value in the pediatric genetic counseling setting, we employed a qualitative design involving thirteen parents of children who received a patient letter following their diagnosis. Parents participated in a semi-structured focus group, interview, or phone interview, and the data were analyzed using thematic analysis. In addition to gathering perceptions of their child's letter, we sought to learn preferences for letter length, formatting, and level of detail by asking for verbal and written feedback on three different letter formats created for a fictional patient. We used self-determination theory (SDT) framework to create the sample letters, which states that an individual's experience of autonomy, competence, and relatedness can impact their ability to engage in activities. This includes caring for a child with special medical needs. While the findings from this work reinforced the importance of written communication for patients as seen in previous research, this work uncovered three major themes about the letter's value: (a) elements such as readability and content impact parent feelings of autonomy and improve competence moving forward with their child's care; (b) parents value written acknowledgment of the emotional impact of the diagnosis; and (c) parents use the letter as a tool to communicate their child's diagnosis with others. These results can be used for creating comprehensible patient letters that support autonomy, competence, and relatedness.
遗传咨询患者信函是遗传咨询实践的有价值的补充。随着对遗传服务需求的增加，提高日常写信等任务的效率可以改善遗传咨询师的工作流程。此外，在提高效率之前，了解收件人对这些信函内容的重视程度对于确保这些信函的实用性不丧失至关重要。为了更好地了解父母在儿科遗传咨询环境中对信函价值的看法，我们采用了一种定性设计，涉及 13 名接受孩子诊断后患者信函的儿童父母。父母参加了半结构化焦点小组、访谈或电话访谈，使用主题分析对数据进行了分析。除了收集对孩子信函的看法外，我们还通过要求对三个不同的虚构患者信函格式进行口头和书面反馈，来了解对信函长度、格式和详细程度的偏好。我们使用自我决定理论 (SDT) 框架来创建样本信函，该理论指出，个人的自主性、能力和相关性体验可以影响他们参与活动的能力。这包括照顾有特殊医疗需求的孩子。虽然这项工作的结果强化了以前的研究中看到的书面交流对患者的重要性，但这项工作揭示了信函价值的三个主要主题：(a) 可读性和内容等因素影响父母的自主性感，并提高他们在孩子护理方面的能力；(b) 父母重视书面承认诊断对情绪的影响；(c) 父母将信函用作与他人沟通孩子诊断的工具。这些结果可用于创建支持自主性、能力和相关性的易于理解的患者信函。
