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“我不是瘾君子,我只是个糖尿病患者”:一项从 1 型糖尿病成年患者视角对污名化现象的定性研究

'I'm not a druggie, I'm just a diabetic': a qualitative study of stigma from the perspective of adults with type 1 diabetes.

作者信息

Browne Jessica L, Ventura Adriana, Mosely Kylie, Speight Jane

机构信息

The Australian Centre for Behavioural Research in Diabetes, Diabetes Australia-Vic, Melbourne, Victoria, Australia Centre for Mental Health and Wellbeing Research, School of Psychology, Deakin University, Burwood, Victoria, Australia.

The Australian Centre for Behavioural Research in Diabetes, Diabetes Australia-Vic, Melbourne, Victoria, Australia School of Psychology, Deakin University, Burwood, Victoria, Australia.

出版信息

BMJ Open. 2014 Jul 23;4(7):e005625. doi: 10.1136/bmjopen-2014-005625.

Abstract

OBJECTIVES

While health-related stigma has been the subject of considerable research in other conditions (eg, HIV/AIDS, obesity), it has not received substantial attention in diabetes. Our aim was to explore perceptions and experiences of diabetes-related stigma from the perspective of adults with type 1 diabetes mellitus (T1DM).

DESIGN

A qualitative study using semistructured interviews, which were audio recorded, transcribed and subject to thematic analysis.

SETTING

All interviews were conducted in non-clinical settings in metropolitan areas of Victoria, Australia.

PARTICIPANTS

Adults aged ≥18 years with T1DM living in Victoria were eligible to take part. Participants were recruited primarily through the state consumer organisation representing people with diabetes. A total of 27 adults with T1DM took part: 15 (56%) were women; median IQR age was 42 (23) years and diabetes duration was 15 (20) years).

RESULTS

Australian adults with T1DM perceive and experience T1DM-specific stigma as well as stigma-by-association with type 2 diabetes. Such stigma is characterised by blame, negative social judgement, stereotyping, exclusion, rejection and discrimination. Participants identified the media, family and friends, healthcare professionals and school teachers as sources of stigma. The negative consequences of this stigma span numerous life domains, including impact on relationships and social identity, emotional well-being and behavioural management of T1DM. This stigma also led to reluctance to disclose the condition in various environments. Adults with T1DM can be both the target and the source of diabetes-related stigma.

CONCLUSIONS

Stigmatisation is part of the social experience of living with T1DM for Australian adults. Strategies and interventions to address and mitigate this diabetes-related stigma need to be developed and evaluated.

摘要

目的

虽然与健康相关的耻辱感在其他疾病(如艾滋病毒/艾滋病、肥胖症)方面已成为大量研究的主题,但在糖尿病领域尚未受到足够关注。我们的目的是从1型糖尿病(T1DM)成年患者的角度探讨与糖尿病相关耻辱感的认知和经历。

设计

一项定性研究,采用半结构化访谈,进行录音、转录并进行主题分析。

背景

所有访谈均在澳大利亚维多利亚州大都市地区的非临床环境中进行。

参与者

年龄≥18岁、居住在维多利亚州且患有T1DM的成年人有资格参与。参与者主要通过代表糖尿病患者的州消费者组织招募。共有27名患有T1DM的成年人参与:15名(56%)为女性;年龄中位数(四分位间距)为42(23)岁,糖尿病病程为15(20)年。

结果

患有T1DM的澳大利亚成年人感受到并经历了T1DM特有的耻辱感以及与2型糖尿病相关的连带耻辱感。这种耻辱感的特征包括指责、负面社会评判、刻板印象、排斥、拒绝和歧视。参与者指出媒体、家人和朋友、医护人员以及学校教师是耻辱感的来源。这种耻辱感的负面后果涉及众多生活领域,包括对人际关系和社会身份、情绪健康以及T1DM行为管理的影响。这种耻辱感还导致在各种环境中不愿透露病情。患有T1DM的成年人可能既是与糖尿病相关耻辱感的目标对象,也是其来源。

结论

对于澳大利亚成年人来说,耻辱感是患有T1DM社会经历的一部分。需要制定和评估应对及减轻这种与糖尿病相关耻辱感的策略和干预措施。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/27d8/4120421/dad90f804f68/bmjopen2014005625f01.jpg

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