Nurs Womens Health. 2024 Aug;28(4):277-287. doi: 10.1016/j.nwh.2024.02.006. Epub 2024 May 18.
To examine mothers' internet usage, in conjunction with social, health care, and virtual peer support navigations, when congenital anomalies were diagnosed in utero.
Qualitative descriptive, consisting of semistructured interviews.
Interview data were collected over Zoom; mothers participated from locations of their choosing.
Mothers of neonates discharged postoperatively from NICUs for uterine-diagnosed congenital anomalies. The sample was purposefully recruited from private Facebook groups for parents of children with congenital anomalies.
INTERVENTION/MEASUREMENTS: Analysis was done with deductive coding using concepts from the third iteration of the systems engineering initiative for patient safety theory. The a priori codes were health care, social, journey-benefit, journey-risk, task, and technology.
Twenty-two mothers signed up for an interview; 12 completed an interview, and 10 did not. The majority (n = 8, 66%) were White, had a bachelor's or graduate degree (n = 7, 58%) and were between 24 and 33 years of age (n = 8, 66%). Nine themes emerged: (a) Providers cautioned searching for diagnosis information but encouraged private Facebook groups for peer support, (b) Mothers' inquiries for their own care are lacking, (c) Search for information while recognizing parent-partner's coping differences, (d) Pace information from friends and family with patience and appreciation, (e) Manage inquiries from friends and family with group sharing, (f) Private Facebook groups provide a means of receiving and giving peer support, (g) Exposure to difficult stories on Facebook is a risk of stress, (h) Select a NICU, learn about their children's diagnoses, participate in virtual peer support, and (i) Device features frame search strategies.
Mothers reflected on the internet as a burden and a source of support in their health care journeys. The ubiquity of internet access calls for mothers to include in their health care journeys the complexities of managing time spent on the internet.
当胎儿被诊断出先天性异常时，研究母亲在互联网使用方面的情况，以及她们在社会、医疗保健和虚拟同行支持方面的导航情况。
定性描述，包括半结构化访谈。
通过 Zoom 收集访谈数据；母亲们在自己选择的地点参加。
新生儿重症监护病房（NICU）出院的子宫诊断为先天性异常的新生儿母亲。样本是从先天性异常儿童父母的私人 Facebook 群组中有意招募的。
干预/措施：使用第三迭代系统工程倡议患者安全理论的概念进行演绎编码分析。先验代码是医疗保健、社会、旅程效益、旅程风险、任务和技术。
有 22 位母亲报名参加了访谈；12 位完成了访谈，10 位没有完成。大多数（n=8，66%）是白人，拥有学士或研究生学位（n=7，58%），年龄在 24 至 33 岁之间（n=8，66%）。出现了 9 个主题：（a）提供者告诫搜索诊断信息，但鼓励私人 Facebook 群组寻求同行支持，（b）母亲缺乏为自己护理的咨询，（c）在认识到父母-伴侣应对差异的同时寻找信息，（d）耐心和感激地对待来自朋友和家人的信息，（e）通过群组分享管理来自朋友和家人的咨询，（f）私人 Facebook 群组提供了接受和给予同行支持的一种方式，（g）在 Facebook 上接触到困难的故事是一种压力风险，（h）选择新生儿重症监护病房，了解他们孩子的诊断，参与虚拟同行支持，以及（i）设备功能框架搜索策略。
母亲们在她们的医疗保健之旅中反思互联网既是负担又是支持。互联网接入的普及要求母亲们将管理花在互联网上的时间的复杂性纳入她们的医疗保健之旅中。
