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

Trial Summary

What is the purpose of this trial?

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.

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.

What data supports the effectiveness of the treatment GOACT, PEER for intellectual and developmental disabilities?

Research shows that training programs for parents, like the Volunteer Advocacy Program-Transition (VAP-T), can improve parents' knowledge, advocacy skills, and empowerment when advocating for services for their children with developmental disabilities. Additionally, peer support programs for parents have been found to enhance family quality of life and provide various benefits, suggesting that similar approaches could be effective for GOACT, PEER. ^{1 2 3 4 5}

Is Parent Advocacy Skills Training for Intellectual and Developmental Disabilities safe for participants?

The available research does not provide specific safety data for Parent Advocacy Skills Training or its related programs like GOACT and PEER. However, these programs focus on training and education, which generally do not pose safety risks to participants. ^{1 3 4 6 7}

How is the treatment GOACT, PEER different from other treatments for intellectual and developmental disabilities?

GOACT, PEER is unique because it focuses on training parents to be effective advocates for their children with intellectual and developmental disabilities by enhancing their communication skills to navigate education and medical systems. This approach is distinct from other treatments that may not emphasize parent advocacy and communication as central components. ^{2 8 9 10 11}

Research Team

Kathleen C Thomas, PhD

Principal Investigator

University of North Carolina, Chapel Hill

Eligibility Criteria

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

Being present for a visit at one of the study clinics

Exclusion Criteria

Parents having evidence of emergency mental health needs

My parents do not consent to being recorded.

Timeline

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

Treatment Details

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.

Participant Groups

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+

Findings from Research

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

References

1. United States 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. [2023]

2. United States pubmed.ncbi.nlm.nih.gov

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

3. United States pubmed.ncbi.nlm.nih.gov

Advocate development in the field of developmental disabilities: a data-based conceptual model. [2011]

4. United States pubmed.ncbi.nlm.nih.gov

Pilot Trial of a Peer-to-Peer Psychoeducational Intervention for Parents of Black Children Awaiting a Developmental Evaluation. [2023]

5. England 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. [2020]

6. United States 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. [2019]

7. Netherlands pubmed.ncbi.nlm.nih.gov

Training parents of retarded children: program-specific outcomes. [2019]

8. United States pubmed.ncbi.nlm.nih.gov

Parent-child interaction training for parents with a history of mental retardation. [2019]

9. England pubmed.ncbi.nlm.nih.gov

Modifying the 'Positive Parenting Program' for parents with intellectual disabilities. [2013]

10. United States pubmed.ncbi.nlm.nih.gov

Parents of children with chronic health impairments: a new approach to advocacy training. [2006]

11. England 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. [2020]