ArticleJournal of rare diseases (Berlin, Germany)2026
Empowering through structured boundaries: an integral model for fostering balanced eating and nutritional well-being.
Article in Journal of rare diseases (Berlin, Germany), 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
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6 authors.
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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: We performed a qualitative thematic analysis of group interviews from 23 caregivers representing 21 individuals with SMS. Hybrid thematic analysis revealed that successful strategies employed by caregivers in this unique population revolved around a global theme of 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.
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