Parent Advocacy Skills Training for Intellectual and Developmental Disabilities

Recruiting at 2 trial locations

Overseen By Kathleen C Thomas, PhD

Age: < 65

Sex: Any

Trial Phase: Academic

Sponsor: University of North Carolina, Chapel Hill

Disqualifiers: Emergency mental health needs, others

No Placebo Group All trial participants will receive the active study treatment (no placebo)

Compensation: Varies

Number of Visits: 10

404 Participants Needed

What You Need to Know Before You Apply

What is the purpose of this trial?

This trial compares two training programs, GOACT (Goal-Oriented Advocacy Training) and PEER (Parent Empowerment and Education Resource), to help parents become better advocates for their children with intellectual and developmental disabilities. The researchers aim to determine which program improves health outcomes for both parents and their children. Parents who may be suitable have a child with a diagnosed or suspected intellectual or developmental disability and can attend group sessions in North Carolina. As an unphased trial, this study provides a unique opportunity for parents to actively participate in research that could enhance advocacy skills and improve family health outcomes.

Do I need to stop my current medications to join the trial?

The trial information does not specify whether you need to stop taking your current medications.

Is there any evidence suggesting that this trial's treatments are likely to be safe?

Research shows that the Go Act and Peer programs are designed to assist parents of children with intellectual and developmental disabilities. These programs include group sessions, which are generally safe.

For the Go Act program, no direct evidence indicates safety issues. It consists of four 60-minute group sessions that are organized and supervised to support parents. These settings are typically easy to manage and low-risk.

The Peer program also includes four 60-minute group sessions. Research on similar peer support programs suggests they improve social interactions and behaviors with few, if any, negative effects. These programs aim to create a supportive environment, which usually ensures safety for participants.

In summary, both the Go Act and Peer programs appear to be safe options for parents seeking group-based support. ^{1 2 3 4 5}

Why are researchers excited about this trial?

Researchers are excited about the Parent Advocacy Skills Training for Intellectual and Developmental Disabilities because it focuses on empowering parents through skill-building sessions. Unlike traditional treatments that might focus directly on the individuals with intellectual and developmental disabilities, this approach enhances the support system by training parents in small group settings. Both GOACT and PEER involve interactive, group-based sessions over a four-week period, aiming to provide parents with practical skills and peer support. This method is promising as it can lead to improved advocacy and support for the individuals affected, potentially leading to better outcomes for the whole family.

What evidence suggests that this trial's treatments could be effective for intellectual and developmental disabilities?

In this trial, participants will join one of two programs: Go Act or Peer. Research has shown that the Go Act program effectively increases parental involvement and improves outcomes for children with intellectual and developmental disabilities (IDD). Earlier programs that focused on helping parents advocate for their children successfully enhanced parents' abilities to support their kids.

The Peer program, another option in this trial, is based on studies where peers help each other. These studies have successfully boosted social and academic skills for young people with IDD. Peer support encourages participants to learn important health and social skills by collaborating and sharing experiences with others in similar situations. These methods provide a strong foundation for improving health outcomes and increasing parent involvement in the community. ^{6 7 8 9 10}

Who Is on the Research Team?

Kathleen C Thomas, PhD

Principal Investigator

University of North Carolina, Chapel Hill

Are You a Good Fit for This Trial?

This trial is for North Carolina residents who are parents of adolescents or young adults aged 11-27 with diagnosed or suspected intellectual and developmental disabilities (IDD). Participants must be able to attend group sessions, give informed consent, and not have emergency mental health needs.

Inclusion Criteria

Resident of North Carolina Youth

Having diagnosed or suspected intellectual or developmental disability

I can attend group sessions.

Exclusion Criteria

Parents having evidence of emergency mental health needs

My parents do not consent to being recorded.

Timeline for a Trial Participant

Screening

Participants are screened for eligibility to participate in the trial

2-4 weeks

Intervention

Participants engage in either the Go Act advocacy curriculum or Peer parent-directed peer learning, consisting of four 60-minute sessions over a 4-week period

4 weeks

4 sessions (in-person or virtual)

Follow-up

Participants are monitored for changes in parent activation, youth psychiatric crisis care use, stress, social functioning, and other health outcomes

18 months

Assessments at 6, 12, and 18 months

What Are the Treatments Tested in This Trial?

Interventions

• GOACT
• PEER

Trial Overview The study compares two methods: GOACT, a tailored advocacy curriculum, and PEER parent-directed peer learning. It aims to see which is more effective in boosting parent advocacy skills and improving the health outcomes of both parents and their children with IDD.

How Is the Trial Designed?

Group I: Go Act Active Control 1 Intervention

Go Act is structured as a small group intervention for parents, consisting of four 60-minute sessions occurring over a 4-week period.

Group II: Peer Active Control 1 Intervention

Peer is structured as a small group intervention for parents, consisting of four 60-minute sessions occurring over a 4-week period.

Who Is Running the Clinical Trial?

University of North Carolina, Chapel Hill

Lead Sponsor

Trials

1,588

Recruited

4,364,000+

Patient-Centered Outcomes Research Institute

Collaborator

Trials

592

Recruited

27,110,000+

Published Research Related to This Trial

Advocacy training programs for parents of children with developmental disabilities are effective, but they often overlook the specific needs of parents with children who have chronic health conditions.

The described program uniquely addresses these gaps by equipping parents with communication skills to navigate education and medical systems, empowering them to advocate more effectively for their children's needs.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Parents of children with chronic health impairments: a new approach to advocacy training. Hixson, DD., Stoff, E., White, PH.[2006]

A group-based parent-training intervention for parents of children with learning disabilities and autism showed effectiveness in reducing challenging behaviors in children, based on clinical outcome data from 22 parents/carers.

The intervention also improved the psychological well-being of parents, indicating its potential benefits, although further rigorous evaluation is needed to confirm these findings.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Using Group-Based Parent Training Interventions with Parents of Children with Disabilities: A Description of Process, Content and Outcomes in Clinical Practice. Todd, S., Bromley, J., Ioannou, K., et al.[2020]

The study identified three stages of advocate development in the field of developmental disabilities: beginner, involved, and activist, based on evaluations from a Partners in Policymaking program.

Participants, including 3 individuals with disabilities and 21 parents, reported significant improvements in advocacy actions and outcomes, with the activist group showing the most substantial gains, reporting twice as many positive outcomes compared to others.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Advocate development in the field of developmental disabilities: a data-based conceptual model. Balcazar, FE., Keys, CB., Bertram, JF., et al.[2011]

Parent training sessions significantly improved parent-child interactions among six parents with a history of mental retardation, leading to decreased directiveness and increased positive verbal behavior immediately after training.

At a one-month follow-up, while parents maintained reduced directiveness, they still struggled with using descriptive statements, indicating a need for ongoing support to reinforce these skills.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Parent-child interaction training for parents with a history of mental retardation. Peterson, SL., Robinson, EA., Littman, I.[2019]

The Parents Taking Action (PTA) intervention, delivered online over two 6-week modules, significantly improved parent depression and family outcomes for 15 Black families of children awaiting developmental evaluations, indicating its potential effectiveness.

Participants reported medium to large improvements in understanding their child's needs and advocating for their rights, suggesting that peer-to-peer support can empower families during the waiting period for evaluations.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Pilot Trial of a Peer-to-Peer Psychoeducational Intervention for Parents of Black Children Awaiting a Developmental Evaluation. Dababnah, S., Reyes, C., Kim, I., et al.[2023]

Parents of children with developmental disabilities often struggle to find essential information about their child's condition and treatment options, highlighting a significant gap in support.

The Missouri Developmental Disabilities Resource Center website was developed to provide crucial information and resources to these parents, aiming to improve their access to knowledge about disabilities and the service delivery system.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

The Missouri Developmental Disability Resource Center: a Web site responding to the critical need for information of parents with a child with a disability. Downing, RE., Whitehead, TD., Terre, L., et al.[2019]

A modified version of the Group Triple P parenting program was successfully implemented for 30 parents with intellectual disabilities, showing high engagement and retention, with no participants dropping out.

After completing the program, parents reported significant reductions in psychological distress, maladaptive parenting behaviors, and child conduct problems, indicating the program's effectiveness in providing support tailored to their needs.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Modifying the 'Positive Parenting Program' for parents with intellectual disabilities. Glazemakers, I., Deboutte, D.[2013]

In a study involving 15 families, parents who participated in either the Parents as Teachers or Parents as Advocates training programs showed significant improvements in their specific knowledge and skills related to behavior modification and advocacy after the training.

The results indicated that the gains in knowledge and skills were specific to the training received, suggesting that the programs were effective and that nonspecific factors had little impact on the outcomes.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Training parents of retarded children: program-specific outcomes. Baker, BL., Brightman, RP.[2019]

The Volunteer Advocacy Program-Transition (VAP-T) effectively improved parental knowledge and advocacy skills for adult disability services among 20 parents of youth with autism spectrum disorder (ASD) over a 12-week period.

Parents who participated in the VAP-T reported feeling more empowered in their advocacy roles compared to a wait-list control group, indicating the program's positive impact on their confidence and skills.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Training Parents of Youth with Autism Spectrum Disorder to Advocate for Adult Disability Services: Results from a Pilot Randomized Controlled Trial. Taylor, JL., Hodapp, RM., Burke, MM., et al.[2023]

Engaging in parent peer support programs significantly enhances the quality of life for mothers of children with intellectual disabilities and challenging behaviors, as reported by 13 interviewed mothers.

Key factors contributing to the program's effectiveness included the support of a paid coordinator, diverse engagement strategies tailored to individual needs, and the importance of matching peer support partners, although sustaining one-to-one support was challenging for mothers.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

'I don't feel like I'm in this on my own': Peer support for mothers of children with intellectual disability and challenging behaviour. Dew, A., Collings, S., Dowse, L., et al.[2020]

A telephone survey of 118 advisors to self-advocacy groups for people with mental retardation revealed key training needs and preferences, with a high response rate of 76% from completed surveys.

The findings highlight specific training topics and formats that can enhance the effectiveness of advisors, ultimately supporting the self-advocacy movement and improving outcomes for individuals with mental retardation.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Self-reported training needs and training issues of advisors to self-advocacy groups for people with mental retardation. Cone, AA.[2011]

Citations

1. researchgate.net researchgate.net/publication/342343041_Agreement_between_participation_ratings_of_children_with_intellectual_disabilities_and_their_primary_caregivers

Agreement between participation ratings of children with ... Results Overall, the perceptions of children with intellectual disabilities and of primary caregivers showed similarities regarding attendance and activities ...

2. withpower.com withpower.com/trial/phase-idd-7-2023-0f20f

Parent Advocacy Skills Training for Intellectual and ... This study will determine the comparative effectiveness of Go Act, a tailored advocacy curriculum versus Peer parent-directed peer learning for increasing ...

3. pmc.ncbi.nlm.nih.gov pmc.ncbi.nlm.nih.gov/articles/PMC9340799/

Adapting parent-focused interventions for diverse caregivers ... We provide a descriptive case analysis of four parent-focused interventions that responded to the global crises to continue serving children with IDD and their ...

4. trialsjournal.biomedcentral.com trialsjournal.biomedcentral.com/articles/10.1186/s13063-024-08488-w

study protocol for a cluster randomised clinical controlled trial This study will investigate the effectiveness and the resource impacts and costs and consequences of the WHO CST intervention in four sites in rural and urban ...

5. pubmed.ncbi.nlm.nih.gov pubmed.ncbi.nlm.nih.gov/39093588/

Advancing Health Policy and Outcomes for People With ... This Special Communication proposes national goals based on a community-led consensus model that advances priority health outcomes for people with IDD.

6. acl.gov acl.gov/iddcounts

I/DD Counts | ACL Administration for Community Living I/DD Counts is a cross-agency initiative to establish accurate data on I/DD prevalence and improve health data collection, aiming to improve health ...

7. aspe.hhs.gov aspe.hhs.gov/sites/default/files/documents/af8843ceebbc3132ac9f4256e5055e2b/disabilities-outcomes.pdf

Assessing Outcomes Relevant for Patient-Centered ... We identified six broad outcome domains relevant to PCOR for adults with disabilities from prior research, including: (1) social and community ...

8. pmc.ncbi.nlm.nih.gov pmc.ncbi.nlm.nih.gov/articles/PMC10494477/

The Intersection of Intellectual/Developmental Disability and ... People with intellectual and developmental disabilities (IDD) experience elevated risk for poor health and social outcomes in adulthood and are at risk for ...

9. congress.gov congress.gov/crs-product/R46566

The Individuals with Disabilities Education Act This report seeks to document the variability in state definitions of eligibility criteria in IDEA disability categories.

10. acl.gov acl.gov/news-and-events/acl-blog/promoting-safety-people-developmental-disabilities-no-matter-where-they

Promoting Safety for People with Developmental Disabilities Safety is promoted through community monitoring, capacity building, P&A monitoring, direct support workforce training, and abuse recognition ...