Management of food socialization for children with Prader-Willi Syndrome: An exploration study in Malaysia

PLoS One. 2024 Aug 30;19(8):e0307874. doi: 10.1371/journal.pone.0307874. eCollection 2024.

Abstract

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.

MeSH terms

  • Adolescent
  • Adult
  • Caregivers* / psychology
  • Child
  • Child, Preschool
  • Family / psychology
  • Feeding Behavior / psychology
  • Female
  • Humans
  • Malaysia
  • Male
  • Prader-Willi Syndrome* / psychology
  • Prader-Willi Syndrome* / therapy
  • Socialization

Grants and funding

This study is a part of the Hubert Curien Partnership France-Malaysia Hibiscus (PHC Hibiscus) Grant titled “The Socialization of eating practices in children with Prader-Willi syndrome” (MYPAIR/1/2020/SS05/TAYLOR/1), funded by Ministry of Higher Education (MOHE), Ministry of Europe and Foreign Affairs (MEAE) and Ministry of National Education, Higher Education and Research (MESRI), France, which is a mirror study of “Socialisation des Pratiques alimentaires des Enfants avec un Syndrôme Prader-Willi” (SoPAP – translation Socialisation of Food Practices of Children with Prader-Willi Syndrome). The URL: https://www.moe.gov.my/en/pemberitahuan/media-statement/deklarasi-bersama-mengenai-pelancaran-rasmi-perkongsian-penyelidikan-hubert-curien-malaysia-perancis. The PLOS cost of publication was supported by the chair of Food Studies of Taylor’s Toulouse University Center (TTUC). The funders play an important role in supporting the research direction and publication requirement. In the capacity of providing financial aid, the funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.