Descriptions of food management strategies.

This study aims to explore the food management strategies among caregivers/family members of children with Prader–Willi Syndrome (PWS) using the lens of ‘familialisation’ of a health problem and the sociology of food socialization. Food intake among individuals with PWS is a main concern for parents, caregivers, and medical practitioners as it affects their physical, mental, and social well-being throughout their lives. Earlier studies on PWS and food intake centered around dietary management, dietary intake and growth, nutritional treatment and pharmacological approaches, nutritional phases, and weight gain. However, little has been done to understand the challenges of managing children with PWS from the sociological lens of food management strategies and socialization among families in Malaysia. This study is based on an investigation involving eight children with PWS and 46 family members and caregivers through lab observations and reflexive interviews. Ten food management strategies were identified that were adopted by the caregivers and families, which were influenced by cultural factors, family norms, and formal and informal support systems. The findings will influence future behavioral interventions to ensure the empowerment and well-being of individuals with PWS and their families.

本研究旨在借助健康问题家庭化视角与食物社会化社会学理论，探究普拉德-威利综合征（Prader–Willi Syndrome，PWS）患儿的照护者及家庭成员所采用的食物管理策略。普拉德-威利综合征患者的食物摄入情况始终是家长、照护者与医务工作者关注的核心议题，因其会对患者一生的生理、心理与社会福祉产生深远影响。既往针对PWS与食物摄入的相关研究，多聚焦于饮食管理、饮食摄入与生长发育、营养治疗与药理学干预手段、营养阶段划分以及体重增长等方向。然而目前鲜有研究从社会学视角，探讨马来西亚当地家庭中食物管理策略与社会化过程对PWS患儿照护所带来的挑战。本研究通过实验室观察与反思性访谈，对8名PWS患儿及46名家庭成员与照护者开展了调研。研究最终识别出照护者与家庭成员所采用的10种食物管理策略，这些策略的选择受到文化因素、家庭规范以及正式与非正式支持体系的影响。本研究结果将为后续行为干预方案提供参考，以助力提升PWS患者及其家庭的赋权水平与福祉状况。