Olsson Cecilia, Lyon Phil, Hörnell Agneta, Ivarsson Anneli, Sydner Ylva Mattsson
Department of food and Nutrition, University of Umeå, Umeå, Sweden.
Qual Health Res. 2009 Jul;19(7):976-84. doi: 10.1177/1049732309338722.
For adolescents with celiac disease (CD), a gluten-free diet (GFD) is crucial for health, but compliance is problematic and noncompliance is common even among those aware of the risks. To better understand their lives with the disease, Swedish CD adolescents were invited to take part in focus group discussions. Data were analyzed for recurrent stigma-related themes across the groups. Adolescents described an awareness of being different from others that was produced by meal appearance and the poor availability of gluten-free food. The GFD often required discussions and special requests, so eating in public had the effect of making an invisible condition visible, and thereby creating a context for felt or enacted stigma. Maintaining invisibility avoided negative consequences of stigma, and other strategies were used to reduce the costs of visibility. The results of the study show that the GFD can produce stigma experiences in adolescence, and that dietary compliance (or lack thereof) can be understood in terms of dealing with GFD concealment and disclosure.
对于患有乳糜泻(CD)的青少年而言,无麸质饮食(GFD)对健康至关重要,但依从性存在问题,即便在知晓风险的人群中,不依从现象也很常见。为了更好地了解他们患这种疾病后的生活,瑞典的乳糜泻青少年受邀参加焦点小组讨论。对各小组中反复出现的与污名化相关的主题进行了数据分析。青少年描述了因饮食外观和无麸质食品供应不足而产生的与他人不同的意识。无麸质饮食通常需要讨论并提出特殊要求,因此在公共场合用餐会使一种隐形的状况变得明显,从而营造出一种实际感受到或表现出污名化的情境。保持隐形可避免污名化的负面后果,并且还采用了其他策略来降低暴露的代价。研究结果表明,无麸质饮食在青少年时期可能会产生污名化体验,并且饮食依从性(或缺乏依从性)可以从应对无麸质饮食的隐瞒和公开的角度来理解。