Latino Families with a Child with Prader–Willi Syndrome: Exploring Needs for Support

Abstract

Prader–Willi syndrome (PWS) is a complex, genetically based disorder; caring for a family member with a disability such as PWS brings significant challenges to the whole family. However, no research has been conducted focusing on the impact of PWS in the dynamics of Latino families. This qualitative study explored the challenges and need for support services among Latino families of children with PWS. Findings of the study suggest the need for support services geared toward the whole family unit to help members cope with daily challenges at home.

KEYWORDS:

• children
• disability
• empathy and support
• ethnic minorities
• individuals with disabilities
• qualitative research
• social work
• social work and disability

ACKNOWLEDGMENTS

We want to express our sincere gratitude to all participants who provided valuable personal information about their unique experiences in their journey of supporting their loved child with PWS.

Notes

Regional Centers are nonprofit private corporations that contract with the Department of Developmental Services to provide or coordinate services and supports for individuals with developmental disabilities. They have offices throughout California to provide a local resource to help find and access the main services available to individuals and their families. Please refer to the following link for more information on Regional Centers: http://www.dds.ca.gov/RC/home.cfm