Development and initial validation of a measure of perceived stigma in irritable bowel syndrome
Development and initial validation of a measure of perceived stigma in irritable bowel syndrome
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DOI：
10.1080/13548500902865956
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发表时间：
2009-01-01
影响因子：
3.8
通讯作者：
Palsson, Olafur
中科院分区：
文献类型：
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作者：
Jones, Michael P.;Keefer, Laurie;Palsson, Olafur
肠易激综合征（IBS）是一种了解不多的消化系统疾病，容易被污名化。我们开发了一种特定条件的感知耻辱的措施，以更好地了解耻辱在这种常见疾病中的作用。问卷项目通过结构化的患者访谈建立。然后，对148名IBS患者进行了10项评估社会领域相关耻辱变量的测量。通过让26名患者的子集在2周后重新完成测量来评估重测信度。49名受访者中有28名（57%）认为自己受到了与IBS相关的某种程度的耻辱。一个10项的措施，开发了以下领域的感知耻辱：有限的披露IBS;相信公众对IBS的知识是低的;感觉IBS没有被认真对待;人们暗示IBS症状是自己造成的;角色限制，因为IBS;和其他人有信念，IBS是“在他们的头”。受访者对新措施的10个项目进行了评分，这些项目涉及医疗保健提供者的社会领域中的感知耻辱;配偶/重要他人;家庭成员;朋友;老板/主管;和同事/同学。污名评分与改良HIV污名量表评分显著相关（r = 0.56; p < 0.0001）。Cronbach's a估计为0.91。平均项目间相关性为0.50，范围为0.29至0.71。Guttman的分半信度系数估计为0.89。重测信度较高（r = 0.91; p < 0.0001）。IBS患者报告说，与同事、雇主和朋友有关的耻辱感程度最高。得分最高的耻辱维度集中在他人对IBS的知识有限，沿着缺乏兴趣或他人对该病症的理解。IBS感知耻辱量表是一个可靠的，有效的测量IBS相关的感知耻辱。
Irritable bowel syndrome (IBS) is a poorly understood digestive disorder prone to stigmatization. We developed a measure of condition-specific perceived stigma to better understand the role of stigma in this common disorder. Questionnaire items were established through structured patient interviews. A 10-item measure assessing relevant stigma variables across social domains was then administered to 148 patients with IBS. Test-retest reliability was assessed by having a subset of 26 patients re-complete the measure after 2 weeks. Twenty-eight out of 49 (57%) interview subjects with some degree of perceived stigma related to their IBS. A 10-item measure was developed with the following areas of perceived stigmatization: limited disclosure of IBS; belief that public knowledge about IBS was low; feeling that IBS was not taken seriously; people implying that IBS symptoms are self-inflicted; role limitations because of IBS; and others having the belief that IBS is 'all in their head'. Respondents rated the 10 items on the new measure with respect to perceived stigma in the social domains of healthcare providers; spouses/significant others; family members; friends; boss/supervisor; and coworkers/classmates. Stigma scores were significantly correlated with scores from the modified HIV stigma instrument (r = 0.56; p < 0.0001). Cronbach's a was estimated at 0.91. Mean inter-item correlation was 0.50 and ranged from 0.29 to 0.71. Guttman's split-half reliability coefficient was estimated at 0.89. Test-retest reliability was high (r = 0.91; p < 0.0001). Patients with IBS reported the greatest degrees of perceived stigma related to coworkers, employers, and friends. Stigma dimensions which received the highest scores focused upon limited knowledge of IBS by others along with a lack of interest or understanding of others towards the condition. The IBS perceived stigma scale is a reliable, valid measure of perceived stigma related to IBS.