Improving the Health of Parents and Their Adolescent and Transition-age Youth With Intellectual and Developmental Disabilities

Improving the Health of Parents and Their Adolescent and Transition-age Youth With Intellectual and Developmental Disabilities

This study will determine the comparative effectiveness of Go Act, a tailored advocacy curriculum versus Peer parent-directed peer learning for increasing parent activation for parents of youth with intellectual and developmental disabilities. Second, it will determine the comparative effectiveness of the two study arms for improving parent and youth health outcomes while assessing whether parent activation serves as a mechanism that mediates their effects on health outcomes.

A well-functioning system of care should provide a broad array of services that can support families with a child with complex health care needs. Nonetheless, adolescents and transition age youth with intellectual and developmental disabilities experience rates of unmet need for health care up to 6 times higher than others resulting in poor health and quality of life for themselves and their families.

The system of care approach has achieved positive impacts for children with intellectual and developmental disabilities and their families, but updates call for training to help parents develop advocacy skills on behalf of their children. Prior research on diverse populations indicates that parent advocacy skills are a promising target for increasing parent self-efficacy, which in turn is associated with better parent and youth health outcomes. Parent advocacy skills can be increased through a psycho-educational advocacy skills curriculum or through parent-directed peer-learning. However, the comparative effectiveness of these two strategies for families raising youth with intellectual and developmental disabilities is not yet known.

This study has two objectives. First, it will determine the comparative effectiveness of Go Act, a tailored advocacy curriculum versus Peer parent-directed peer learning for increasing parent activation for parents of youth with intellectual and developmental disabilities . Second, it will determine the comparative effectiveness of the two study arms for improving parent and youth health outcomes while assessing whether parent activation serves as a mechanism that mediates their effects on health outcomes.

Inclusion Criteria:

Parents

• Raising an adolescent or young adult child (age 11-27), with diagnosed or suspected intellectual or developmental disability
• Able to attend group sessions
• Able to give informed consent
• Resident of any state except New York or Illinois due to electronic signature law

Youth

• Being between the ages of 11 and 27
• Having diagnosed or suspected intellectual or developmental disability

Exclusion Criteria:

Parents

• Having evidence of emergency mental health needs