Empowering through structured boundaries: an integral model for fostering balanced eating and nutritional well-being

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Authors: Citrine Elatrash, Colleen Macke, Jenna Shi, Theresa A. Wilson, Sarah H. Elsea, Stephanie R. Sisley
Cited by: 0
References: 14

Abstract

Purpose: Treating obesity in complex disorders requires individualized health management plans. Effective obesity management in the Smith-Magenis syndrome (SMS) population has multiple inherent barriers related to their cognitive impairments, anxiety, behavioral disturbances, and sleep disorders. However, to date, no research exists related to strategies caregivers successfully employ to help individuals with SMS manage their food intake and mitigate associated behaviors. Methods: . Results: Four themes emerged: Fostering Balanced Eating, Structuring Environments, Setting the Stage for Success, and Managing Challenges and Resistance. Together, our analysis shows that successful strategies utilized by caregivers often involve setting up explicit boundaries, both literal and figurative, that provide choice empowerment to the individual with SMS. Additionally, anticipatory guidance, deflection, and positive language were utilized throughout different contexts. Conclusions: These data are the first to define and disseminate a variety of successful strategies utilized by caregivers of individuals with SMS to decrease food-related disruptive behaviors. Supplementary Information: The online version contains supplementary material available at 10.1007/s44162-025-00145-3.

Fields of Study & Subjects

Child Nutrition and Feeding Issues Eating Disorders and Behaviors Nutrition Health and Food Behavior

Publication details

Journal / source
Journal of Rare Diseases
Volume
5
Issue
1
Pages
2–2
Publication date
13 January 2026
Language
EN