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巴德-比德尔综合征超重儿童家长所感受到的礼貌性污名的特征

Characterization of Courtesy Stigma Perceived by Parents of Overweight Children with Bardet-Biedl Syndrome.

作者信息

Hamlington Barbara, Ivey Lauren E, Brenna Ethan, Biesecker Leslie G, Biesecker Barbara B, Sapp Julie C

机构信息

Rocky Mountain Cancer Centers, US Oncology, Denver, Colorado, United States of America; Social and Behavioral Research Branch, National Human Genome Research Institute, Bethesda, Maryland, United States of America.

Metabolic Genetics and Molecular Genomics Branch, National Human Genome Research Institute, Bethesda, Maryland, United States of America.

出版信息

PLoS One. 2015 Oct 16;10(10):e0140705. doi: 10.1371/journal.pone.0140705. eCollection 2015.

Abstract

BACKGROUND

A child's obesity is generally perceived by the public to be under the control of the child's parents. While the health consequences of childhood obesity are well understood, less is known about psychological and social effects of having an obese child on parents. We set out to characterize stigma and courtesy stigma experiences surrounding obesity among children with Bardet-Biedl syndrome (BBS), a multisystem genetic disorder, and their parents.

METHODS

Twenty-eight parents of children with BBS participated in semi-structured interviews informed by social stigmatization theory, which describes courtesy stigma as parental perception of stigmatization by association with a stigmatized child. Parents were asked to describe such experiences.

RESULTS

Parents of children with BBS reported the child's obesity as the most frequent target of stigmatization. They perceived health care providers as the predominant source of courtesy stigma, describing interactions that resulted in feeling devalued and judged as incompetent parents.

CONCLUSIONS

Parents of children with BBS feel blamed by others for their child's obesity and described experiences that suggest health care providers may contribute to courtesy stigma and thus impede effective communication about managing obesity. Health care providers may reinforce parental feelings of guilt and responsibility by repeating information parents may have previously heard and ignoring extremely challenging barriers to weight management, such as a genetic predisposition to obesity. Strategies to understand and incorporate parents' perceptions and causal attributions of their children's weight may improve communication about weight control.

摘要

背景

在公众认知中,儿童肥胖问题通常被认为由孩子的父母负责。虽然儿童肥胖对健康的影响已为人熟知,但对于有肥胖孩子的父母所产生的心理和社会影响却知之甚少。我们旨在描述患有巴德-比德尔综合征(BBS,一种多系统遗传性疾病)的儿童及其父母围绕肥胖所经历的耻辱感和连带耻辱感。

方法

28位患有BBS儿童的家长参与了基于社会污名化理论的半结构化访谈,该理论将连带耻辱感描述为父母因与受污名化的孩子相关联而产生的被污名化认知。家长们被要求描述此类经历。

结果

患有BBS儿童的家长报告称,孩子的肥胖是最常被污名化的对象。他们认为医疗服务提供者是连带耻辱感的主要来源,描述了一些互动经历,这些互动导致他们感到自己被贬低,并被评判为不称职的父母。

结论

患有BBS儿童的家长因孩子的肥胖而感到被他人指责,并描述了一些经历,表明医疗服务提供者可能会加剧连带耻辱感,从而阻碍关于肥胖管理的有效沟通。医疗服务提供者可能会通过重复家长之前可能听到过的信息,并忽视体重管理面临的极具挑战性的障碍(如肥胖的遗传易感性),来强化家长的内疚感和责任感。理解并纳入家长对孩子体重的认知和因果归因的策略,可能会改善关于体重控制的沟通。

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