Faro Elissa Z, Santillan Donna A, Funk Meghan L, Boeldt Kara, Santillan Mark K
Internal Medicine, University of Iowa Hospitals & Clinics, Iowa City, IA, United States.
Obstetrics & Gynecology, University of Iowa Hospitals & Clinics, Iowa City, IA, United States.
Front Glob Womens Health. 2024 Nov 28;5:1410831. doi: 10.3389/fgwh.2024.1410831. eCollection 2024.
The use of social media for health-related reasons is growing, but there is a dearth of research on the mechanisms of support provided. Understanding how social media groups work could improve communications between providers and patients. Preeclampsia (PreE) is a hypertensive disease of pregnancy that has short- and long-term physical and psychosocial effects. The Preeclampsia, Eclampsia & HELLP Syndrome Survivors Global Support Network (PEHSS) Facebook group is an online, international, moderated support group that provides evidence-based information and community support. Our study aimed to (1) characterize the forms of social support and types of information sought and provided from the perspective of the group moderators and members, and (2) describe group members' experiences of patient care. We triangulated interview and survey findings to identify gaps in care, ultimately to inform in improvements in care delivery.
We began with 30-45-minute semi-structured interviews with PEHSS moderators exploring experiences and perceptions of membership; preliminary findings were member-checked with additional moderators. Interviews were analyzed using template and matrix analysis. Based on emergent themes, we conducted an online, validated patient experience survey with PEHSS members that was analyzed using descriptive statistics.
Emotional and social support, mental health, resources and education, and personal health advocacy emerged as major themes in the 12 interviews. 1,148 PEHSS members responded to the survey. 68% of survey participants wanted to be more involved in the decisions about their care and treatment and over 30% felt they were not informed about danger signals post discharge while approximately half reported always feeling treated with respect and dignity while in the hospital. Geographic analysis showed differences in experiences of communication with providers within and outside the US.
The triangulated results from interviews and surveys indicated a need for better communication with providers and the ability for patients to have more input on their care. The survey results indicate a global issue in providing support for people with hypertensive disorders of pregnancy during their hospitalization. The needs currently supported through communities on social media highlight opportunities to address critical gaps in care.
出于健康相关原因使用社交媒体的情况正在增加，但对于所提供支持机制的研究却很匮乏。了解社交媒体群组如何运作有助于改善医疗服务提供者与患者之间的沟通。子痫前期（PreE）是一种妊娠期高血压疾病，会产生短期和长期的生理及心理社会影响。子痫前期、子痫及 HELLP 综合征幸存者全球支持网络（PEHSS）脸书群组是一个在线的、国际性的、有管理员管理的支持群组，提供基于证据的信息和社区支持。我们的研究旨在：（1）从群组管理员和成员的角度描述社会支持的形式以及所寻求和提供的信息类型；（2）描述群组成员的患者护理体验。我们对访谈和调查结果进行三角互证，以确定护理中的差距，最终为改善护理服务提供参考。
我们首先对 PEHSS 管理员进行了 30 - 45 分钟的半结构化访谈，探讨他们对成员情况的体验和看法；初步结果与其他管理员进行了成员核实。访谈采用模板分析和矩阵分析。基于浮现出的主题，我们对 PEHSS 成员进行了一项经过验证的在线患者体验调查，并使用描述性统计方法进行分析。
情感和社会支持、心理健康、资源与教育以及个人健康倡导在 12 次访谈中成为主要主题。1148 名 PEHSS 成员回复了调查。68%的调查参与者希望更多地参与到关于他们护理和治疗的决策中，超过 30%的人觉得他们在出院后没有被告知危险信号，而约一半的人表示在住院期间始终感觉受到尊重和有尊严的对待。地理分析显示了美国境内外与医疗服务提供者沟通体验的差异。
访谈和调查的三角互证结果表明需要改善与医疗服务提供者的沟通，以及让患者对其护理有更多的参与权。调查结果表明在为妊娠期高血压疾病患者住院期间提供支持方面存在一个全球性问题。目前通过社交媒体社区所满足的需求凸显了解决护理中关键差距的机会。
