Department of Population Health Sciences, School of Life Course and Population Sciences, Kings College London, London, UK.
Sociol Health Illn. 2022 Nov;44(9):1408-1426. doi: 10.1111/1467-9566.13516. Epub 2022 Aug 16.
Online patient communities have proliferated rapidly, as has literature exploring the role such communities play in allowing patients to share knowledge, offer support to one another, and advocate for better medical care. Yet there has been limited scholarly engagement with patient community in gestational diabetes (GDM). Drawing on a grounded theory analysis of 18 semi-structured interviews with women with GDM, I explore how participating in an online GDM support community shaped these women's experiences of pregnancy and illness. Women's interactions with one another prompted them to appraise, contest, and co-create knowledge claims about GDM. Those in the community supported each other through the difficulties of GDM, but also held each other accountable to their regimes of self-management, often to a greater extent than their health professionals. The networks of peer support within the community engendered new ethics of care and responsibility, reframing GDM as a condition worthy of more personalised treatment and increased medical attention. These findings attest to the emergence of patient-led biocitizenship in GDM, although a caveat is given that these participants all had access to resources that facilitated their engagement with self-care practices. Further research should explore GDM patient community in marginalised populations.
在线患者社区迅速发展，探索此类社区在允许患者分享知识、相互支持和倡导更好的医疗保健方面发挥作用的文献也层出不穷。然而，学术研究对妊娠糖尿病（GDM）患者社区的参与度有限。本研究通过对 18 名患有 GDM 的女性进行半结构化访谈的扎根理论分析，探讨了参与在线 GDM 支持社区如何塑造这些女性的妊娠和疾病体验。女性之间的互动促使她们评估、质疑和共同创造有关 GDM 的知识主张。社区中的成员相互支持克服 GDM 的困难，但也要求彼此遵守自我管理的规定，这种支持往往比健康专业人员更为严格。社区内的同伴支持网络产生了新的关爱和责任伦理，将 GDM 重新定义为一种值得更个性化治疗和更多医疗关注的疾病。这些发现证明了在 GDM 中出现了患者主导的生物公民身份，但需要注意的是，这些参与者都有资源来促进他们参与自我保健实践。进一步的研究应该探讨边缘化人群中的 GDM 患者社区。
