Fenilcetofood: an educational game for inclusion and understanding of phenylketonuria

• Grant number: 23/18417-7
• Support Opportunities: Scholarships in Brazil - Scientific Initiation
• Start date: April 01, 2024
• End date: December 31, 2024
• Field of knowledge: Health Sciences - Collective Health - Public Health
• Principal Investigator: Andréa Cristina de Moraes Malinverni
• Grantee: Gabriella Cristhiambell Souza da Costa
• Host Institution: Escola Paulista de Medicina (EPM). Universidade Federal de São Paulo (UNIFESP). Campus São Paulo. São Paulo , SP, Brazil

Abstract

Phenylketonuria (Phenylketonuria, PKU) is an autosomal recessive disordercharacterized by the inability to metabolize the amino acid phenylalanine(Phenylalanine, Phe). If left untreated, Phe accumulation results in impairedneurological and psychological development. The diagnosis of PKU in a childfundamentally changes the lives of parents and caregivers and has a significantimpact. Stigmatization, misconceptions and feelings of social exclusion are commonproblems. The general population does not understand protein restrictions, and forpeople with PKU, having to eat different foods causes unwanted attention. Bullying,mainly in the form of verbal abuse, tends to occur during mealtimes when children withPKU are seen as "different", as a result some children have withdrawn from socialsituations or refuse to attend school. This study aims to evaluate the effectiveness ofthe Fenilcetofood board game, which seeks to inclusively help spread knowledgeabout the genetic disease PKU. Furthermore, this game seeks to bring visibility toschool curricula, especially in biology curricula, and can allow a discussion aboutgenetics and health that brings ethical, scientific and social questions, deepening anecessary debate, in training spaces, not only in basic education, but also in the initialteachers training and health professionals training.