The Existence and Experience of Body Image in Individuals with Prader-Willi Syndrome  

Jillian Maynard Caliendo¹, Jennifer Zarcone², Cary R. Savage³

¹ Avila University, Kansas City, MO ² University of Rochester Medical Center, Rochester, NY ³ University of Kansas Medical Center, Kansas City, KS

Obesity has been associated with many negative psychological effects, most notably: difficulties forming relationships with peers, body image dissatisfaction, depression, and suicide. While the scientific community has addressed how body size (or perceived body size) affects individuals in the general population, few studies exist that deal directly with constructs like body image and body esteem in individuals with a genetic basis for obesity (i.e., individuals with Prader-Willi syndrome (PWS).  In addition, there have been no studies of how individuals with developmental disabilities perceive their body image and if they experience the same issues related to body image and body esteem as typically developing individuals. The current study seeks to understand the psychological outcomes that might stem from the physical consequences of compulsive-food related behavior associated with PWS, and asks if and to what degree the concepts of body image or body esteem exist in individuals with PWS. It is hypothesized that individuals with PWS will respond similarly to typically-developing individuals or individuals with eating disorders in the general population. 

A preliminary analysis with 9 females and 5 males with PWS (mean age 20.9 and mean BMI 29.3) was conducted. Participants rated on a scale of 1-9 (with 1 = very thin and 9 = significantly obese) who they felt they currently looked and how they wished to look. On average, individuals with PWS scored themselves to be a 4.9 (females scored themselves 3.8) which is approximately average weight according to the scale. The total group indicated that they wished they were a 3.1 on the scale of 1-9, with females scoring the goal as slightly lower (3.0) on the scale. Interestingly, when the parents of the participants (all female) were asked to complete the same scale on their children, they scored the current status of their child to be significantly heavier (5.8) with a goal of their child being 4.1 which is a little heavier than the children indicated was their goal. Participants also completed a Body Esteem Scale that asked them to rate from negative (1) to neutral (3) to positive (5) how they felt about specific parts of their body. Results indicated that participants felt either neutrally or positively about their body with no difference between males and females with this preliminary study group. Additional ANOVA analysis will compare the differences in the experience of body image and body esteem between at-weight, overweight and obese individuals with PWS. 

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