Improving the Health of Parents and Their Adolescent and Transition-age Youth With Intellectual and Developmental Disabilities
Trial Snapshot
- Phase
- Not Applicable
- Status
- Active, not recruiting
- Enrollment
- 406
- Locations
- 2
- Primary Endpoint
- Difference in change in parent activation
Study Overview
Brief Summary
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.
Detailed Description
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.
Study Design
- Study Type
- Interventional
- Allocation
- Randomized
- Intervention Model
- Parallel
- Primary Purpose
- Treatment
- Masking
- Single (Participant)
Eligibility Criteria
- Ages
- 11 Years to 27 Years (Child, Adult)
- Sex
- All
- Accepts Healthy Volunteers
- Yes
Inclusion Criteria
- •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
- •Being between the ages of 11 and 27
- •Having diagnosed or suspected intellectual or developmental disability
Exclusion Criteria
- •Having evidence of emergency mental health needs
Arms & Interventions
Go Act
Go Act is structured as a small group intervention for parents, consisting of four 60-minute sessions occurring over a 4-week period.
Intervention: Go Act (Behavioral)
Peer
Peer is structured as a small group intervention for parents, consisting of four 60-minute sessions occurring over a 4-week period.
Intervention: Peer (Behavioral)
Outcomes
Primary Outcomes
Difference in change in parent activation
Time Frame: up to18 months after intervention
The Parent Patient Activation Measure will be used to capture parent activation on behalf of their child (mean score=70) at 6, 12 and 18 months after intervention. The Parent Patient Activation Measure is a parent self-report 13-item scale with 4-level likert responses and scores ranging from 0 to 100.
Difference in change in youth social functioning- life satisfaction
Time Frame: up to18 months after intervention
Youth social functioning will be assessed using the NIH Patient-Reported Outcomes Measurement Information System for children life satisfaction measure at 6, 12 and 18 months after intervention.
Difference in change in parent depression
Time Frame: up to 18 months after intervention
Parent depression will be measured with the 8-item Patient Health Questionnaire at 6, 12 and 18 months after intervention. The Patient Health Questionnaire is scored from 0 to 24.
Change in parent activation
Time Frame: up to18 months after intervention
The Parent Patient Activation Measure will be used to capture parent activation on behalf of their child (mean score=70) at 6, 12 and 18 months after intervention. The Parent Patient Activation Measure is a parent self-report 13-item scale with 4-level likert responses and scores ranging from 0 to 100.
Change in youth social functioning- life satisfaction
Time Frame: up to18 months after intervention
Youth social functioning will be assessed using the NIH Patient-Reported Outcomes Measurement Information System for children life satisfaction measure at 6, 12 and 18 months after intervention.
Change in parent depression
Time Frame: up to 18 months after intervention
Parent depression will be measured with the 8-item Patient Health Questionnaire at 6, 12 and 18 months after intervention. The Patient Health Questionnaire is scored from 0 to 24.
Secondary Outcomes
- Difference in change in alliance(up to 18 months after intervention)
- Difference in change in parenting self-efficacy(up to 18 months after intervention)
- Difference in change in stress(up to 18 months after intervention)
- Difference in change in observed parent activation(up to18 months after intervention)
- Difference in change in shared decision-making(up to 18 months after intervention)
- Difference in change in youth social functioning- meaning & purpose(up to 18 months after intervention)
- Difference in change in youth unmet need for care(up to 18 months after intervention)
- Difference in change in youth psychiatric crisis care use(up to 18 months after intervention)
- Difference in change in number of inpatient psychiatric stays(up to 18 months after intervention)
- Difference in change in goal attainment(up to 18 months after intervention)
- Change in youth psychiatric crisis care use(up to 18 months after intervention)
- Change in parenting self-efficacy(up to 18 months after intervention)
- Change in shared decision-making(up to 18 months after intervention)
- Change in alliance(up to 18 months after intervention)
- Change in goal attainment(up to 18 months after intervention)
- Change in stress(up to 18 months after intervention)
- Change in observed parent activation(up to18 months after intervention)
- Change in youth social functioning- meaning & purpose(up to 18 months after intervention)
- Change in youth unmet need for care(up to 18 months after intervention)
- Change in number of inpatient psychiatric stays(up to 18 months after intervention)