ABSTRACT

Uncertainty is a prevalent and influential experience for people managing chronic illness. People living with diabetes experience individual, relational, and illness-related uncertainty across the illness trajectory, yet scholars know little about the lived experience of diabetes uncertainty. To fill this gap, our study examined interpersonal exchanges in 22 US-based online forums geared toward people with diabetes. Our results revealed four sources of diabetes uncertainty: using tools, experiencing complications, negotiating multiple health issues, and affording care. This uncertainty prompted two mutually influential responses: worrying/fearing and controlling diabetes. Support-seeking emerged as a primary communicative goal for people with diabetes, as they managed uncertainty through navigating finances, choosing tools to manage the disease, establishing norms, and crowdsourcing care. The results have pragmatic value for informing diabetes self-management education.

摘要

对于控制慢性病的人来说，不确定性是一种普遍且有影响力的经验。糖尿病患者在疾病轨迹上会遇到与个体，关系和与疾病相关的不确定性，但学者对糖尿病不确定性的实际经验知之甚少。为了填补这一空白，我们的研究在22个针对糖尿病患者的美国在线论坛上检查了人际交往。我们的结果揭示了糖尿病不确定性的四个来源：使用工具，遇到并发症，就多个健康问题进行谈判以及提供护理。这种不确定性引发了两种相互影响的反应：令人担忧/恐惧和控制糖尿病。寻求支持已成为糖尿病患者的主要沟通目标，因为他们可以通过导航资金，选择管理疾病的工具来管理不确定性，建立规范和众包护理。研究结果对指导糖尿病自我管理教育具有实用价值。