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Practical Implementations Overcoming Household Barriers to Achieve Total Food Control in Prader-Willi Syndrome

Semester: Summer 2023


Presentation description

Ironically, households dealing with Prader-Willi Syndrome (PWS) thrive when absolute physical control over food exists despite the prevailing concept of least restrictive environments. PWS is a complex genetic disorder characterized by multiple symptoms, including one of the more notable ones, hyperphagia, a constant feeling of hunger, which often leads to severe food seeking and stealing, confabulation, obesity, and associated health complications. Despite years of household training, almost all families surveyed struggle to achieve adequate physical food control in the home. Absolute food control has been shown to reduce anxieties in individuals and households. We conducted an in-depth review of existing literature, and we inventoried households for current food control strategies and needs. We found that assistance is needed to achieve adequate physical security, including guidance, installation, and training. Factors contributing to security failures include distractions and devices that are too cumbersome. Anecdotally we confirmed that consistent food control plays a crucial role in reducing anxiety and ensuring the safety of households with PWS. Many families start implementing security measures too late, which may lead to preventable issues. Protecting items that may appear like ""food,"" including non-edible substances like cleaning chemicals, art supplies, and medicine, is also essential. We secured funding and technical assistance. Now we are purchasing security equipment for families, installing the equipment, and training the families on proper equipment use. With these efforts, many of our households are achieving absolute food control and we expect to continue these implementations ongoing as needed. |We expect our interventions to continue in the coming months as new families are matriculated into the management. We plan to formally evaluate the effectiveness of our intentions in the next grant cycle. These evaluations would include the impact on BMI, anxiety, and on cultural understanding of exceptions to least restrictive environments.

Presenter Name: Christopher Rich

Presentation Type: Poster
Presentation Format: In Person
Presentation #38
College: Medicine
School / Department: Pediatrics
Research Mentor: David Viskochil
Date | Time: Thursday, Aug 3rd | 9:00 AM