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Thinking about joining? Here are some FAQs.

What is the purpose of this study?

The purpose of this study is to compare two ways for parents to build advocacy skills on behalf of their transition-age youth with intellectual and developmental disabilities (IDD).

What will happen if you take part in the study?

You will attend a group with other parents; the groups will meet 4 times, once a week for 1 hour by zoom. There are two different types of groups; both are peer-to-peer learning groups and you will be assigned to one randomly.

What are the possible benefits from being in this study?

You may learn new advocacy skills. As a result, you may get and coordinate needed medical services and non-medical supports for your child. This may improve parent and child health. 

Will you receive anything for being in this study? Will it cost anything?

Parents and youth will be paid $30 for the completion of each survey in thanks for their time ($120 total). It will not cost you anything to be in the study.

Who is sponsoring the study?

This research is funded by the Patient-Centered Outcomes Research Institute (PCORI) (the sponsor).

How long will my participation last?

You will participate in a total of four parent groups that take place once a week, over the course of four consecutive weeks. We will follow up with you 6, 12 and 18 months following your participation to collect follow-up surveys.