Department of Family Medicine, University of Colorado School of Medicine, Anschutz Medical Campus, 12631 E. 17th Avenue, Mail Stop F496, Aurora, CO, 80045, USA.
Department of Family and Community Medicine, Penn State College of Medicine, Hershey, PA, USA.
Curr Diab Rep. 2020 Feb 20;20(3):10. doi: 10.1007/s11892-020-1294-3.
Diabetes is a chronic disease that, regardless of type, requires intensive, ongoing self-management. As a result, people with diabetes (PWD) often have complex environmental, social, behavioral, and informational needs, many of which are unmet in healthcare settings and systems. To help meet these needs, many PWD interact with diabetes online communities (DOCs), including platforms such as Facebook, Twitter, and blogs, to share real-life support, problems, and concerns with other PWD, offering a rich source of data on patient-reported outcomes. This article reviews recent psychosocial needs and outcomes identified by studies of DOCs and/or their users.
Participation in DOCs appears driven by a need for psychosocial support, unmet by providers and the healthcare system, as well as a sense of duty to provide it to others. The most common activities observed in DOCs are giving and receiving various types of support: psychosocial, technical, informational, and self-management. General and specific challenges (e.g., continuous glucose monitoring) as well as frustrations and worries associated with those challenges are commonly expressed, leading to reciprocal sharing, support, and encouragement, in a judgment-free manner, from other PWD. This leads users to feel more understood, empowered, validated, less alone, and more supported. Negative findings were reported very rarely and focused more on how other participants used social media rather than on the exchange of misplaced or dangerous information or advice. Diabetes online communities have grown from unmet needs for problem-solving and psychosocial support for living with a complex condition and from the availability of a new communications medium (i.e., social media). This has enabled communities of peers to both seek and receive support for living with diabetes, providing an important supplement to what is provided in healthcare settings and offering valuable information about what is most important to PWD and their families, with the potential to improve psychosocial care.
糖尿病是一种慢性病，无论类型如何，都需要持续的强化自我管理。因此，糖尿病患者（PWD）通常有复杂的环境、社会、行为和信息需求，其中许多需求在医疗保健环境和系统中无法得到满足。为了满足这些需求，许多 PWD 通过糖尿病在线社区（DOC）与他人互动，包括 Facebook、Twitter 和博客等平台，与其他 PWD 分享现实生活中的支持、问题和关注点，为患者报告的结果提供了丰富的数据来源。本文综述了最近通过 DOC 及其用户的研究确定的心理社会需求和结果。
参与 DOC 似乎是出于对心理社会支持的需求，而这种支持是提供者和医疗保健系统无法提供的，同时也有一种向他人提供支持的责任感。在 DOC 中观察到的最常见活动是提供和接收各种类型的支持：心理社会、技术、信息和自我管理。一般和具体的挑战（例如，连续血糖监测）以及与这些挑战相关的挫折和担忧，在没有评判的情况下，经常在其他 PWD 之间相互分享、支持和鼓励。这使得用户感到更被理解、更有力量、更有价值、不那么孤独、更受支持。很少有负面发现，而且更多地关注其他参与者如何使用社交媒体，而不是关注交流中是否存在错误或危险的信息或建议。糖尿病在线社区的发展源于解决问题和对复杂疾病生活的心理社会支持的未满足需求，以及新的通信媒介（即社交媒体）的可用性。这使同伴社区能够为糖尿病患者的生活寻求和提供支持，为医疗保健环境提供的支持提供了重要的补充，并提供了关于对 PWD 和他们的家人最重要的信息，有可能改善心理社会护理。
