Research Purpose and Goals
The primary purpose of this study is to enhance the social, emotional, intellectual, and physical health of minority families through education and awareness. The goal of this study is to gather empirical data that would inform the creation of the 1st Minority Fragile X Syndrome Education and Awareness (MEAX) program designed for minority families.
The researcher wants to find out what people think about available resources related to the management and treatment of FXS in communities populated with minority families. Resources unique to the individual child, family, and system that impact the overall quality of life for minority families are examined.
The researcher also wants to evaluate how minority children and families with FXS develop based on family factors such as marital satisfaction, family bonding, social/emotional health, and available community resources needed to manage and treat FXS.
The study examines which system factors such as quality and usefulness of community health professionals, logistical support in the community, and source of FXS referral; and factors unique to the child such as functional skills, education performance, social and emotional health impact child and family development and outcome. Information on the relationship between these factors and impact on the overall quality of life for the family unit can help advance FXS for all!
