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Characterization of Courtesy Stigma Perceived by Parents of Overweight Children with Bardet-Biedl Syndrome
Authors:Barbara Hamlington  Lauren E Ivey  Ethan Brenna  Leslie G Biesecker  Barbara B Biesecker  Julie C Sapp
Institution:1. Rocky Mountain Cancer Centers, US Oncology, Denver, Colorado, United States of America.; 2. Social and Behavioral Research Branch, National Human Genome Research Institute, Bethesda, Maryland, United States of America.; 3. Metabolic Genetics and Molecular Genomics Branch, National Human Genome Research Institute, Bethesda, Maryland, United States of America.; National Eye Institute, UNITED STATES,
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.
Keywords:
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