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

N/AActive Not RecruitingNCT05986305

University of North Carolina, Chapel Hill406 enrolled

Overview

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.

Study Type

INTERVENTIONAL

Allocation

RANDOMIZED

Purpose

TREATMENT

Interventions

Go ActBEHAVIORAL

Go Act sessions address becoming a parent who can 'Go Act,' caring for one's self as a parent, understanding and managing youth health needs, working with health providers as partners, and working with other service providers such as schools and vocational services. The intervention uses motivational interviewing, story-telling with self-disclosure, psycho-education introduced with a know-want to know-learned strategy, problem-solving, role play, and practice outside of class.

PeerBEHAVIORAL

During Peer sessions facilitators lay ground rules for respectful and confidential sharing and encourage group discussion. The group provides a format to make personal connections through shared identity. Participants may discuss strategies for individualized advocacy, so that they learn from the experiences of others.

Eligibility

Sex: ALLMin age: 11 YearsMax age: 27 YearsHealthy volunteers:

Medical Language ↔ Plain English

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

Outcomes

Primary Outcomes

Difference in change in parent activation

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.

Time frame: up to18 months after intervention

Difference in change in youth social functioning- life satisfaction

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.

Time frame: up to18 months after intervention

Difference in change in parent depression

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.