Division of Child and Adolescent Psychiatry, Department of Clinical and Experimental Medicine, Linköping University, Linköping, Sweden.
PLoS One. 2013 Apr 23;8(4):e62096. doi: 10.1371/journal.pone.0062096. Print 2013.
Little is known about parents' views on the use of online resources for information, education and support regarding childhood type 1 diabetes (T1DM). Considering the rapidly evolving new communication practices, parents' perspectives need to be explored. The main purpose of this paper was to explore parents' perceptions of their information-seeking, Internet use, and social networking online. This applied to their everyday life, including the contexts of T1DM and contact with peers. A second aim was to identify implications for future development of Internet use in this respect.
METHODOLOGY/PRINCIPAL FINDINGS: Twenty-seven parents of 24 young persons aged 10-17 with T1DM participated in eight focus group interviews during their regular visits to a county hospital. Focus group discussions were video/audio-taped, transcribed and analysed using inductive qualitative content analysis. Self-reported demographic and medical information was also collected. A main theme was Finding things out, including two sub-themes, Trust and Suitability. The latter were key factors affecting parents' perceptions of online resources. Parents' choice of information source was related to the situation, previous experiences and knowledge about sources and, most importantly, the level of trust in the source. A constantly present background theme was Life situation, including two sub-themes, Roles and functions and Emotions and needs. Parents' information-seeking regarding T1DM varied greatly, and was closely associated with their life situation, the adolescents development phases and the disease trajectory.
CONCLUSIONS/SIGNIFICANCE: Health practitioners and system developers need to focus on creating trust and suitability for users' needs. They should understand the children's diverse needs, which depend on their life situation, on the children's development, and on the disease trajectory. To enhance trust in online health information and support services, the participation of local practitioners is crucial.
对于父母在使用在线资源获取儿童 1 型糖尿病（T1DM）相关信息、教育和支持方面的看法，目前知之甚少。考虑到新的沟通方式正在迅速发展，需要探索父母的观点。本文的主要目的是探讨父母对其信息搜索、互联网使用和在线社交网络的看法。这适用于他们的日常生活，包括 T1DM 背景和与同龄人接触的情况。第二个目的是确定在这方面互联网使用未来发展的意义。
方法/主要发现：27 名 10-17 岁 24 名 T1DM 年轻患者的父母参加了 8 次焦点小组访谈，访谈是在他们定期到县医院就诊期间进行的。对焦点小组讨论进行了视频/音频录制、转录和分析，使用归纳定性内容分析。还收集了自我报告的人口统计学和医疗信息。一个主要主题是寻找信息，包括两个子主题，信任和适宜性。后者是影响父母对在线资源看法的关键因素。父母对信息来源的选择与情况、以前的经验和对来源的了解有关，最重要的是与来源的信任程度有关。一个始终存在的背景主题是生活状况，包括两个子主题，角色和功能以及情感和需求。父母对 T1DM 的信息搜索差异很大，这与他们的生活状况、青少年发展阶段和疾病轨迹密切相关。
结论/意义：卫生保健从业者和系统开发者需要关注为用户需求创造信任和适宜性。他们应该了解儿童的多样化需求，这些需求取决于他们的生活状况、儿童的发展以及疾病的轨迹。为了增强对在线健康信息和支持服务的信任，当地从业者的参与至关重要。
