What is the ALS family and youth study?
- Online survey with adults living with ALS across the United States
- Phone interviews with youth ages 8-18, who help care for or assist the person with ALS (this can be a parent, grandparent, Aunt, Uncle).
The study was completed in early 2017
Facts about the study
- Over 100 families participated
- in these families, 38 youth completed interviews about their experiences being a caregiver to a family with member with ALS