Internet Use by Parents of Children With Rare Conditions: Findings From a Study on Parents' Web Information Needs.
Internet Use by Parents of Children With Rare Conditions: Findings From a Study on Parents' Web Information Needs.
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DOI：
10.2196/jmir.5834
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发表时间：
2017-02-28
影响因子：
7.4
通讯作者：
Lynch AM
中科院分区：
文献类型：
--
作者：
Nicholl H;Tracey C;Begley T;King C;Lynch AM
患有罕见疾病的儿童的父母越来越多地使用互联网来获取有关孩子病情的信息。这项研究报告的一部分，一个更大的研究，其总体目标是确定互联网使用的父母在寻求信息时，他们的孩子的罕见的条件，与使用的研究结果，以帮助开发一个专门设计的网站，以满足父母的需求的具体目的。它介绍了这些父母为什么使用互联网，他们的信息和支持内容的来源，以及这些资源对他们照顾和管理孩子的状况的能力的影响。为了（1）确定父母的一般互联网使用模式，（2）确定父母最经常搜索的信息的性质，以及（3）确定互联网来源的信息对罕见疾病儿童的父母的影响。数据收集分为两部分：第一部分是焦点小组访谈（n=8），以告知问卷的开发，第二部分是问卷（基于网络和纸质）。所有受访者（N=128）使用互联网完成了调查问卷。父母经常和习惯性地使用互联网和社交媒体收集有关其子女状况的信息。这些网络资源为家长提供了一个家长对家长的支持平台，使他们能够与其他家长分享经验和信息，受访者认为，这提高了他们对子女状况的认识和理解。受访者还报告说，这些资源对他们的决策、照顾和管理孩子的状况产生了积极影响。然而，他们报告说，在希望与医疗保健专业人员进行互动和分享他们的互联网和社交媒体互动和信息成果时，他们得到了不同的回应。这项研究增加了新兴的研究机构对互联网的使用儿童的父母与罕见的条件，以源信息，他们的孩子的条件。通过社交媒体不断发展和不断增加的父母对父母的支持系统正在影响父母管理子女的能力。对实践的影响包括卫生保健专业人员对这种知识和能力转变的反应，以及这些变化在与父母互动时的意义。这项研究的关键信息是，患有罕见疾病的儿童的父母是互联网的习惯性用户，以获取有关儿童病情的信息。社交媒体，特别是Facebook，在这些父母的生活中发挥着越来越大的作用，以获得信息和支持。父母对信息收集和共享的兴趣包括与医疗保健专业人员进行共享对话的愿望。
Parents of children with rare conditions increasingly use the Internet to source information on their child’s condition. This study reports on part of a larger study whose overall aim was to identify the Internet use by parents when seeking information on their child’s rare condition, with the specific purpose of using the findings to aid in the development of a website specifically designed to meet the parents’ needs. It presents findings on why these parents use the Internet, the information and support content they source, and the impact these resources have on their capacity to care for and manage their child’s condition. To (1) ascertain parents’ general Internet usage patterns, (2) identify the nature of the information parents most frequently searched for, and (3) determine the effect the Internet-sourced information had on parents of children with rare conditions. Data collection was conducted in 2 parts: Part 1 was a focus group interview (n=8) to inform the development of the questionnaire, and Part 2 was a questionnaire (Web- and paper-based). All respondents (N=128) completed the questionnaire using the Internet. Parents frequently and habitually used the Internet and social media to gather information on their child’s condition. These Web-based resources provide parents with a parent-to-parent support platform that allows them to share their experiences and information with other parents, which, the respondents considered, improved their knowledge and understanding of their child’s condition. The respondents also reported that these resources positively impacted on their decision making, care, and management of their child’s condition. However, they reported receiving mixed responses when wishing to engage and share with health care professionals their Internet and social media interactions and information outcomes. This study adds to the emerging body of research on the Internet use by parents of children with rare conditions to source information on their child’s condition. The evolving and ever increasing parent-to-parent support systems via social media are impacting on parents’ capacity to manage their children. Implications for practice include health care professionals’ response to this knowledge and capacity shift, and the significance of these changes when interacting with parents. The key message of this study was that parents of children with rare conditions are habitual users of the Internet to source information about their children’s conditions. Social media, especially Facebook, has an increasing role in the lives of these parents for information and support. Parents’ interest in information gathering and sharing includes a desire for shared dialogue with health care professionals.