Translating Peer-to-Peer Support Into a Clinical Setting

NCT04313283 | Completed Results

• 2 other identifiers: HP-000904471UL1TR003098
• Study Type: interventional
• Target: 36
• Locations: 1 country
• Sites: 1

Brief Summary

There is not a lot of research focusing on Black and African American families raising young children with developmental delays. While the investigators know that early intervention helps children and their families, Black children with developmental delays are less likely to access such services. The causes for these racial disparities are largely unknown. Researchers have recommended caregiver support programming while on waitlists to improve caregiver-provider interactions and caregiver knowledge of the diagnostic process and developmental delays. Once a child is referred to a clinic for developmental concerns, long appointment waitlists contribute to further delays in timely diagnosis and treatment, as well as parental distress. Support programs for waitlisted families can begin to address these challenges. In this study, the investigators will examine a program called Parents Taking Action with families on a waitlist for a specialty developmental evaluation. The investigators will study if the program is feasible in this setting, if participants like the program, and if child and parent outcomes improve after participants have completed the program.

Conditions

Development Delay; Neurodevelopmental Disorders; Autism

Keywords

Developmental delays; Parenting; Autism

Outcome Measures

Primary Outcomes (1)

• Parenting Stress

  Autism Parenting Stress Index (APSI): This measure includes 13 items that assess core autism symptoms, comorbid behaviors, and comorbid physical behaviors. Each item is based on a 5-point rating scale with descriptors for 0, 1, 2, 3, and 5. Possible range is 0-65. Higher scores indicate more parenting stress.

  Pre-intervention and post-intervention at 12 weeks

Secondary Outcomes (4)

• Depression

  Pre-intervention and post-intervention at 12 weeks

• Family Functioning

  Pre-intervention and post-intervention at 12 weeks

• Fidelity

  Weekly through intervention (12 weeks total)

• Child Behavior

  Pre-intervention and post-intervention at 12 weeks

Study Arms (1)

Parents Taking Action

EXPERIMENTAL

A peer-led intervention, Parents Taking Action is the psychoeducational and child behavior management intervention led by trained Parent Leaders for 12 weeks.

Behavioral: Parents Taking Action

Interventions

Parents Taking Action BEHAVIORAL

A peer-led intervention, Parents Taking Action is the psychoeducational and child behavior management intervention led by trained Parent Leaders.

Parents Taking Action

Eligibility Criteria

• Age: 18 Years+
• Sex: all
• Healthy Volunteers: Yes
• Age Groups: Adult (18-64), Older Adult (65+)

You may qualify if:

• Parent or other primary caregiver of a child age eight years or younger on University of Maryland Baltimore, Developmental-Behavioral waiting list for autism or developmental concerns
• Identify self or child as Black or African American.

You may not qualify if:

• Parent or other primary caregiver is younger than 18 years old

Sponsors & Collaborators

• University of Maryland, Baltimore: lead
• National Center for Advancing Translational Sciences (NCATS): collaborator

Study Sites (1)

University of Maryland

Baltimore, Maryland, 21201, United States

Location

Related Publications (12)

• Magana S, Lopez K, Salkas K, Iland E, Morales MA, Garcia Torres M, Zeng W, Machalicek W. A Randomized Waitlist-Control Group Study of a Culturally Tailored Parent Education Intervention for Latino Parents of Children with ASD. J Autism Dev Disord. 2020 Jan;50(1):250-262. doi: 10.1007/s10803-019-04252-1.

  PMID: 31606887 BACKGROUND

• Kuhn JL, Vanegas SB, Salgado R, Borjas SK, Magana S, Smith DaWalt L. The Cultural Adaptation of a Transition Program for Latino Families of Youth with Autism Spectrum Disorder. Fam Process. 2020 Jun;59(2):477-491. doi: 10.1111/famp.12439. Epub 2019 Mar 7.

  PMID: 30844083 BACKGROUND

• Shaia WE, Nichols HM, Dababnah S, Campion K, Garbarino N. Brief Report: Participation of Black and African-American Families in Autism Research. J Autism Dev Disord. 2020 May;50(5):1841-1846. doi: 10.1007/s10803-019-03926-0.

  PMID: 30805765 BACKGROUND

• Dababnah S, Shaia WE, Campion K, Nichols HM. "We Had to Keep Pushing": Caregivers' Perspectives on Autism Screening and Referral Practices of Black Children in Primary Care. Intellect Dev Disabil. 2018 Oct;56(5):321-336. doi: 10.1352/1934-9556-56.5.321.

  PMID: 30273522 BACKGROUND

• Koegel LK, Koegel RL, Ashbaugh K, Bradshaw J. The importance of early identification and intervention for children with or at risk for autism spectrum disorders. Int J Speech Lang Pathol. 2014 Feb;16(1):50-6. doi: 10.3109/17549507.2013.861511. Epub 2013 Dec 11.

  PMID: 24328352 BACKGROUND

• Feinberg E, Silverstein M, Donahue S, Bliss R. The impact of race on participation in part C early intervention services. J Dev Behav Pediatr. 2011 May;32(4):284-91. doi: 10.1097/DBP.0b013e3182142fbd.

  PMID: 21389865 BACKGROUND

• Nguyen CT, Krakowiak P, Hansen R, Hertz-Picciotto I, Angkustsiri K. Sociodemographic Disparities in Intervention Service Utilization in Families of Children with Autism Spectrum Disorder. J Autism Dev Disord. 2016 Dec;46(12):3729-3738. doi: 10.1007/s10803-016-2913-3.

  PMID: 27639855 BACKGROUND

• Mandell DS, Ittenbach RF, Levy SE, Pinto-Martin JA. Disparities in diagnoses received prior to a diagnosis of autism spectrum disorder. J Autism Dev Disord. 2007 Oct;37(9):1795-802. doi: 10.1007/s10803-006-0314-8. Epub 2006 Dec 8.

  PMID: 17160456 BACKGROUND

• Denman K, Smart C, Dallos R, Levett P. How Families Make Sense of Their Child's Behaviour When on an Autism Assessment and Diagnosis Waiting List. J Autism Dev Disord. 2016 Nov;46(11):3408-3423. doi: 10.1007/s10803-016-2873-7.

  PMID: 27480420 BACKGROUND

• Kalb LG, Freedman B, Foster C, Menon D, Landa R, Kishfy L, Law P. Determinants of appointment absenteeism at an outpatient pediatric autism clinic. J Dev Behav Pediatr. 2012 Nov-Dec;33(9):685-97. doi: 10.1097/DBP.0b013e31826c66ef.

  PMID: 23095496 BACKGROUND

• Connolly M, Gersch I. A support group for parents of children on a waiting list for an assessment for autism spectrum disorder. Educational Psychology in Practice. 2013; 29(3): 293-308.

  BACKGROUND

• Dababnah S, Reyes C, Kim I, Badawi DG, Chung Y, Shaia WE. Pilot Trial of a Peer-to-Peer Psychoeducational Intervention for Parents of Black Children Awaiting a Developmental Evaluation. J Dev Behav Pediatr. 2023 Jun-Jul 01;44(5):e370-e378. doi: 10.1097/DBP.0000000000001182. Epub 2023 Apr 26.

  PMID: 37099652 DERIVED

MeSH Terms

Conditions

Learning Disabilities; Neurodevelopmental Disorders; Autistic Disorder

Condition Hierarchy (Ancestors)

Communication Disorders; Neurobehavioral Manifestations; Neurologic Manifestations; Nervous System Diseases; Signs and Symptoms; Pathological Conditions, Signs and Symptoms; Mental Disorders; Autism Spectrum Disorder; Child Development Disorders, Pervasive

Results Point of Contact

• Title: Sarah Dababnah
• Organization: University of Maryland Baltimore

sdababnah@ssw.umaryland.edu

14107068076

Publication Agreements

• PI is Sponsor Employee: Yes

Study Design

• Study Type: interventional
• Phase: not applicable
• Allocation: NA
• Masking: NONE
• Purpose: TREATMENT
• Intervention Model: SINGLE GROUP
• Sponsor Type: OTHER
• Responsible Party: PRINCIPAL INVESTIGATOR
• PI Title: Associate Professor

Study Record Dates

• First Submitted: March 15, 2020
• First Posted: March 18, 2020
• Study Start: September 16, 2020
• Primary Completion: October 31, 2021
• Study Completion: October 31, 2021
• Last Updated: March 10, 2023
• Results First Posted: March 10, 2023

Record last verified: 2023-03

Data Sharing

• IPD Sharing: Will not share

Locations

US (1)