Oser Tamara K, Oser Sean M, McGinley Erin L, Stuckey Heather L
Department of Family and Community Medicine, Penn State College of Medicine, Hershey, PA, United States.
Departments of Internal Medicine, Humanities, and Public Health Sciences, Penn State College of Medicine, Hershey, PA, United States.
JMIR Diabetes. 2017 Oct 26;2(2):e27. doi: 10.2196/diabetes.8966.
With rising incidence of type 1 diabetes (T1D) diagnoses among children and the high levels of distress experienced by the caregivers of these children, caregiver support is becoming increasingly important. Historically, relatively few support resources have existed. Increasing use of the Internet, and blogs in particular, has seen a growth of peer support between caregivers of children with T1D. However, little is known about the type and quality of information shared on T1D caregiver blogs. At the same time, the information on such blogs offers a new window into what challenges and successes caregivers experience in helping to manage their children's T1D.
The purpose of this study was to (1) analyze blogs of caregivers to children with T1D to better understand the challenges and successes they face in raising a child with T1D, and (2) assess the blogs for the presence of unsafe or inaccurate clinical information or advice.
An inductive thematic qualitative study was conducted of three blogs authored by caregivers of children living with T1D, which included 140 unique blog posts and 663 associated comments. Two physician investigators evaluated the blogs for presence of clinical or medical misinformation.
Five major themes emerged: (1) the impact of the child's diagnosis, (2) the burden of intense self-management experienced in caring for a child with T1D, (3) caregivers' use of technology to ease their fear of hypoglycemia and impacts that device alarms associated with this technology have on caregiver burden, (4) caregivers' perceptions of frequently missed or delayed diagnosis of T1D and the frustration this causes, and (5) the resilience that caregivers develop despite the burdens they experience. Misinformation was exceedingly rare and benign when it did occur.
Blog analysis represents a novel approach to understand the T1D caregiver's experience. This qualitative study found many challenges that caregivers face in raising a child with T1D. Despite the many barriers caregivers face in managing their children's T1D, they find support through advocacy efforts and peer-to-peer blogging. Blogs provide a unique avenue for support, with only rare and benign findings of medical misinformation, and may be a resource that diabetes care providers can consider offering to families for support.
随着儿童1型糖尿病（T1D）诊断发病率的上升以及这些儿童的照料者所经历的高度痛苦，照料者支持变得越来越重要。从历史上看，可用的支持资源相对较少。互联网的使用日益增加，尤其是博客，使得T1D儿童的照料者之间的同伴支持有所增长。然而，对于T1D照料者博客上分享的信息类型和质量知之甚少。与此同时，此类博客上的信息为了解照料者在帮助管理孩子的T1D过程中所经历的挑战和成功提供了一个新窗口。
本研究的目的是（1）分析T1D儿童照料者的博客，以更好地了解他们在抚养患有T1D的孩子时所面临的挑战和成功，以及（2）评估博客中是否存在不安全或不准确的临床信息或建议。
对由T1D患儿照料者撰写的三个博客进行了归纳主题定性研究，其中包括140篇独特的博客文章和663条相关评论。两名医生研究人员评估博客中是否存在临床或医学错误信息。
出现了五个主要主题：（1）孩子诊断的影响，（2）照料患有T1D的孩子时经历的强化自我管理负担，（3）照料者使用技术来减轻对低血糖的恐惧以及与该技术相关联的设备警报对照料者负担的影响，（4）照料者对T1D经常漏诊或误诊的看法以及由此产生的挫败感，（5）尽管经历了种种负担，但照料者仍培养出的适应力。错误信息极为罕见，且一旦出现也并无大碍。
博客分析是了解T1D照料者经历的一种新方法。这项定性研究发现了照料者在抚养患有T1D的孩子时面临的许多挑战。尽管照料者在管理孩子的T1D方面面临诸多障碍，但他们通过宣传努力和同伴间的博客交流获得了支持。博客提供了一种独特的支持途径，医学错误信息的发现极为罕见且并无大碍，并且可能是糖尿病护理提供者可以考虑提供给家庭以获得支持的一种资源。
