%0期刊文章%@ 1438-8871 %I JMIR出版物%V 21%卡塔尔世界杯8强波胆分析 N 11% P e15847 %T使用ConnectEpeople探索孩子患有唐氏综合症，唇裂伴或不伴腭裂，先天性心脏缺陷或脊柱裂的父母的研究重点:A社交媒体联合制作研究%A辛克莱，马琳%A麦卡洛，朱莉EM %A艾略特，大卫%A拉托斯-别伦斯卡，安娜%A布拉兹，保拉%A卡维罗-卡贝尔，克拉拉%A贾姆里-德祖拉，安娜%A João桑托斯，安娜%A Páramo-Rodríguez,Lucía +护理与健康研究所，阿尔斯特大学，海岸路，12J09室，纽敦abbey，北爱尔兰，BT37 0QB，英国，44 02890368118，m.sinclair1@ulster.ac.uk %K e-forum %K社交媒体%K网络调查%K Facebook %K STAI %K唐氏综合症%K唇裂伴有或不伴有腭裂%K先天性心脏缺陷%K脊柱裂%K父母%K眼中心症%K合产%D 2019 %7 25.11.2019 %9原创论文%J J医学互联网Res %G英语%X背景:在招募、参与者对研究过程的知识和伦理问题方面，使用社交媒体进行研究是新颖和具有挑战性的。这篇论文提供了洞察招募欧洲父母的特定先天性异常的儿童通过使用社交媒体参与合作生产研究。为新招募的研究意识家长(rap)建立了秘密的Facebook群组，以提供最佳的安全性，让他们彼此私下和秘密地交流，并让研究团队提出问题并解释发现。目的:本研究旨在利用社交媒体招募和参与研究的父母，并确定唐氏综合征、唇裂伴或不伴腭裂、先天性心脏缺陷和脊柱裂儿童父母的研究重点。方法:采用探索性和描述性设计，分3个阶段。第一阶段包括招募rap人员并提出对他们重要的研究问题;第二阶段是基于网络的调查，使用Qualtrics软件设计，第三阶段包括使用James Lind联盟的方法对前10个研究问题进行分析和排名。使用简单描述性统计数据进行分析，并获得阿尔斯特大学护理与健康研究所伦理筛选委员会的伦理批准。 Results: The recruitment of 32 RAPs was a sensitive process, varying in the time taken to consent (mean 51 days). However, parents valued the screening approach using the State-Trait Anxiety Inventory as a measure to ensure their well-being (mean 32.5). In phase 1, RAPs generated 98 research questions. In phase 2, 251 respondents accessed the Web-based survey, 248 consented, and 80 completed the survey, giving a completeness rate of 32.3% (80/248). Most parents used social media (74/80, 92%). Social media, online forums, and meeting in person were ranked the most preferable methods for communication with support groups networks and charities. Most respondents stated that they had a good understanding of research reports (71/80, 89%) and statistics (68/80, 85%) and could differentiate among the different types of research methodologies (62/80, 78%). Phase 3 demonstrated consensus among RAPs and survey respondents, with a need to know the facts about their child’s condition, future health, and psychosocial and educational outcomes for children with similar issues. Conclusions: Social media is a valuable facilitator in the coproduction of research between parents and researchers. From a theoretical perspective, ocularcentrism can be an applicable frame of reference for understanding how people favor visual contact. %M 31763986 %R 10.2196/15847 %U //www.mybigtv.com/2019/11/e15847/ %U https://doi.org/10.2196/15847 %U http://www.ncbi.nlm.nih.gov/pubmed/31763986