Management of food socialization for children with Prader-Willi Syndrome: An exploration study in Malaysia
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.
Authors
- Mohd Ismail Noor (ORCID: https://orcid.org/0000-0003-4465-2310)
- Amandine Rochedy (ORCID: https://orcid.org/0000-0003-3940-0610)
- Marion Valette (ORCID: https://orcid.org/0000-0002-2113-824X)
- M. Tauber (ORCID: https://orcid.org/0000-0002-0363-7862)
- Puspa Melati Wan (ORCID: https://orcid.org/0000-0002-3471-8374)
- Anasuya Jegathevi Jegathesan (ORCID: https://orcid.org/0000-0003-1617-6951)
- Jean‐Pierre Poulain (ORCID: https://orcid.org/0000-0002-7111-8167)
- Affezah Ali
- Soon Li Lee (ORCID: https://orcid.org/0000-0003-0860-811X)
- Meow‐Keong Thong (ORCID: https://orcid.org/0000-0002-7288-7910)
- Élise Mognard (ORCID: https://orcid.org/0000-0001-9579-236X)
- Rajalakshmi Ganesan
Institutions
- Monash University Malaysia (MY)
- Centre National de la Recherche Scientifique (FR)
- University Malaya Medical Centre (MY)
- Inserm (FR)
- Université Fédérale de Toulouse Midi-Pyrénées (FR)
- University of Cyberjaya (MY)
- University of Malaya (MY)
- Centre d'Étude et de Recherche Travail Organisation Pouvoir (FR)
- Taylor's University (MY)
- National University of Malaysia (MY)
- Universiti Tunku Abdul Rahman (MY)
Publication Details
- Journal
- PLoS ONE
- Published
- 2024-08-30
- DOI
- https://doi.org/10.1371/journal.pone.0307874
- Citations
- 1
- Primary Topic
- Genetic Syndromes and Imprinting
- Type
- article
- Field-Weighted Citation Impact
- 0.55
Funders
- Ministère de l'Enseignement supérieur, de la Recherche et de l'Innovation
- Ministry of Higher Education, Malaysia
- Ministère de l'Europe et des Affaires Étrangères
- Universiti Malaya
- Ministry of Education, India
- Université de Toulouse
- Ministère de l’Europe et des Affaires étrangères