Titgemeyer Sarah Catrin, Schaaf Christian P
University of Cologne, Cologne, Germany.
Institute of Human Genetics, Heidelberg University, Heidelberg, Germany.
JMIR Pediatr Parent. 2022 Jan 6;5(1):e31411. doi: 10.2196/31411.
Because of the nature of rare diseases with affected individuals being widely geographically dispersed, finding an in-person/offline support group itself can be a challenge. Affected individuals therefore turn to social networking platforms such as Facebook for online support groups.
We aim to put into perspective the opportunities Facebook offers as a tool for pediatric rare disease support groups by investigating its use, advantages, and limitations including privacy concerns. We analyze group accessibility and usage, advantages specific to rare diseases, perceived privacy, and views on using Facebook for communication between health professionals and parents, pharmaceutical companies, and study recruitment.
We contacted 12 Facebook support groups for 12 respective rare diseases with pediatric onset and invited group members to participate in a cross-sectional online survey.
Of 231 respondents, 87.0% (n=201) of respondents were female, 12.6% (n=29) were male, and 0.4% reported another sex (n=1). Respondents' mean age was 41.56 years (SD 9.375); 91.3% (n=211) of respondents were parents (183 mothers, 27 fathers, 1 other sex); 59.7% (n=138) reported a self-initiated search for the Facebook group, 24.2% (n=56) received recommendations from their health professionals, and 12.6% (n=29) recommendations from someone else affected by the disease. On average, support group members visited Facebook at least once a day, visited and passively participated (read/liked posts) several times a week, and participated actively (commented/posted) once a month. As much as 79.2% (183/231) agreed that they would like to have health professionals as members of the respective Facebook group. Group members expressed more concern about privacy issues on Facebook in general than in their respective Facebook support groups, with concerns mostly related to Facebook itself and nongroup members.
Our study confirmed that Facebook enhances support group accessibility for parents of children with rare diseases. Group participants perceive a reduction and elimination of distance, a common challenge in rare disease, and Facebook support groups create an environment of perceived privacy. The group's privacy setting can be a critical factor for active support group participation. Sharing personal information and pictures on Facebook is very common among group participants, which shows the importance of discussing and protecting children's privacy rights in this context.
German Clinical Trials Register DRKS00016067; https://www.drks.de/drks_web/navigate.do?navigationId=trial.HTML&TRIAL_ID=DRKS00016067.
由于罕见病的性质，患者在地理上分布广泛，找到一个线下支持小组本身就是一项挑战。因此，患者会转向脸书等社交网络平台寻找线上支持小组。
我们旨在通过调查脸书作为儿科罕见病支持小组工具的使用情况、优势和局限性（包括隐私问题），来正确看待脸书所提供的机会。我们分析了小组的可及性和使用情况、罕见病特有的优势、感知到的隐私以及对脸书用于医疗专业人员与家长、制药公司之间沟通以及研究招募的看法。
我们联系了12个针对12种不同儿科罕见病的脸书支持小组，并邀请小组成员参与一项横断面在线调查。
在231名受访者中，87.0%（n = 201）为女性，12.6%（n = 29）为男性，0.4%（n = 1）报告为其他性别。受访者的平均年龄为41.56岁（标准差9.375）；91.3%（n = 211）的受访者为家长（183名母亲，27名父亲，1名其他性别）；59.7%（n = 138）报告是自己主动搜索到脸书小组的，24.2%（n = 56）是从医疗专业人员那里获得推荐的，12.6%（n = 29）是从其他患病者那里获得推荐的。平均而言，支持小组成员每天至少访问一次脸书，每周多次访问并被动参与（阅读/点赞帖子），每月积极参与（评论/发帖）一次。多达79.2%（183/231）的受访者表示希望医疗专业人员成为各自脸书小组的成员。与各自的脸书支持小组相比，小组成员总体上对脸书上的隐私问题更为关注，担忧主要与脸书本身和非小组成员有关。
我们的研究证实，脸书提高了罕见病患儿家长对支持小组的可及性。小组成员认为减少并消除了距离，这是罕见病中常见的挑战，而且脸书支持小组营造了一种隐私感。小组的隐私设置可能是支持小组积极参与的关键因素。在脸书上分享个人信息和照片在小组成员中非常普遍，这表明在此背景下讨论和保护儿童隐私权的重要性。
德国临床试验注册中心DRKS00016067；https://www.drks.de/drks_web/navigate.do?navigationId=trial.HTML&TRIAL_ID=DRKS
00016067 。
