Division of Plastic and Reconstructive Surgery, Department of Surgery, Washington University in St. Louis, St. Louis, Missouri, USA.
Division of Pediatric Neurosurgery, Department of Neurosurgery, Washington University School of Medicine, St. Louis, Missouri, USA.
Cleft Palate Craniofac J. 2024 Dec;61(12):1991-2001. doi: 10.1177/10556656231190043. Epub 2023 Jul 24.
Apply thematic analysis of online discussion boards to characterize families' experiences and concerns regarding craniosynostosis diagnoses to aid physicians in tailoring care to families.
Grounded theory-based qualitative analysis.
Discussion boards related to craniosynostosis identified via Google and Yahoo.
PATIENTS/PARTICIPANTS: Posts about craniosynostosis between 2017-2022.
Thematic analysis was performed using three rounds of coding. Post features including author type and use of technical language were examined.
Overarching themes emerging from analysis of posts, with forums analyzed until sufficient thematic repetition was observed.
366 posts from 4 websites by 290 unique users were included. Parents of patients with craniosynostosis wrote 59% of posts while patients wrote 4%. Five selective codes were identified: 1) Building Community, 2) Diagnosis/Evaluation, 3) Treatment, 4) Outcomes, and 5) Emotional Concerns. Building Community was the most assigned code (85% of posts). 71% of parents' posts expressing emotional concerns expressed negative emotions, commonly regarding anxiety about diagnosis (71%), frustration about doctors' responses (21%), or negative reactions to online search results (17%). 88% of patients' posts expressed positive emotions, discussing positive long-term outcomes. Concerns that may guide physicians included anxiety about delayed diagnosis, difficulty distinguishing postpartum head shape changes from craniosynostosis, and difficulty finding a care team.
Online discussion boards allow families of patients with craniosynostosis to share experiences and find community. Improving communication between surgeons, pediatricians, and families about timing of evaluation and revising online information about this condition may ameliorate some anxiety associated with this diagnosis.
通过对在线论坛的主题分析，描述家庭对颅缝早闭诊断的经验和关注点，以帮助医生为家庭提供个性化的护理。
基于扎根理论的定性分析。
通过谷歌和雅虎搜索到与颅缝早闭相关的论坛。
患者/参与者：2017-2022 年期间发表的关于颅缝早闭的帖子。
使用三轮编码进行主题分析。检查帖子的作者类型和使用技术语言等特征。
从帖子分析中得出的总体主题，直到观察到足够的主题重复。
4 个网站的 366 个帖子由 290 个唯一用户发表。颅缝早闭患儿的家长撰写了 59%的帖子，而患儿本人仅撰写了 4%。确定了 5 个选择性编码：1）建立社区，2）诊断/评估，3）治疗，4）结果，和 5）情绪关注。建立社区是分配最多的编码（85%的帖子）。71%的家长表达情绪困扰的帖子表达了负面情绪，常见的是对诊断的焦虑（71%），对医生反应的沮丧（21%），或对在线搜索结果的负面反应（17%）。88%的患儿帖子表达了积极的情绪，讨论了积极的长期结果。可能指导医生的关注点包括对延迟诊断的焦虑，区分产后头型变化与颅缝早闭的困难，以及寻找护理团队的困难。
在线论坛允许颅缝早闭患儿的家庭分享经验并找到社区。改善外科医生、儿科医生和家庭之间关于评估时间的沟通，并修改有关这种疾病的在线信息，可能会减轻与这种诊断相关的一些焦虑。
