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中国的1型糖尿病污名化:呼吁终结对患有可控慢性病患者的贬低。

Type 1 diabetes stigma in China: a call to end the devaluation of individuals living with a manageable chronic disease.

作者信息

Jaacks Lindsay M, Liu Wei, Ji Linong, Mayer-Davis Elizabeth J

机构信息

Department of Nutrition, The University of North Carolina, Chapel Hill, NC, USA.

Department of Endocrinology and Metabolism, Peking University People's Hospital, Beijing, China.

出版信息

Diabetes Res Clin Pract. 2015 Feb;107(2):306-7. doi: 10.1016/j.diabres.2014.12.002. Epub 2014 Dec 16.

DOI:10.1016/j.diabres.2014.12.002
PMID:25547225
Abstract

Stigma is a significant barrier to improving care for individuals with type 1 diabetes mellitus (T1DM). This commentary describes this phenomenon in China, where stigma has led to labeling and devaluing of individuals with T1DM. Difficulties finding a spouse and regulations restricting admission to universities and government employment have forced many individuals to hide their diabetes. The shame, fear, and guilt stemming from stigma may preclude the use of insulin pumps; multiple daily injections, which require pre-meal insulin dosing at school or the workplace; participation in research studies; and general health-seeking behaviors. A multifaceted, multilevel approach is urgently needed and should involve improving public awareness and understanding of T1DM; adoption by health care providers of holistic rather than biomedical approaches to disease management; patient counseling on positive coping skills; and expansion of the scope of research to consider the psychosocial realities of diabetes care in China. Recent media attention in the form of a nationally broadcasted documentary on T1DM is an important step in the right direction. We believe that coordinated action by multiple stakeholders can lead to meaningful improvements in treatment, ultimately leading to better physical and emotional health outcomes for individuals living with this manageable chronic disease.

摘要

耻辱感是改善1型糖尿病(T1DM)患者护理的重大障碍。本评论描述了中国的这一现象,耻辱感导致了对T1DM患者的标签化和贬低。找配偶困难以及大学入学和政府就业限制规定迫使许多患者隐瞒自己的糖尿病病情。耻辱感带来的羞耻、恐惧和内疚可能会妨碍胰岛素泵的使用;妨碍多次每日注射(这需要在学校或工作场所进行餐前胰岛素注射);妨碍参与研究;以及妨碍一般的寻求健康行为。迫切需要采取多方面、多层次的方法,这应包括提高公众对T1DM的认识和理解;医疗服务提供者采用整体而非生物医学的疾病管理方法;为患者提供积极应对技巧的咨询;以及扩大研究范围,以考虑中国糖尿病护理的社会心理现实。近期以一部全国播出的关于T1DM的纪录片形式出现的媒体关注是朝着正确方向迈出的重要一步。我们相信,多个利益相关者的协调行动能够带来治疗方面有意义的改善,最终为患有这种可控制慢性病的个体带来更好的身心健康结果。

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