Autism Doula Program Evaluation

Официальное название

EVALUATION OF A COMMUNITY DRIVEN, EQUITABLE INTERVENTION FOR BLACK CHILDREN WITH AUTISM

Обзор

Background: Findings from a group level assessment with caregivers of Black children with autism revealed barriers to equitable care and services (e.g., a lack of cultural representation among their child's care team, caregiver stress, stigma, and uncertainty about services needed). The Autism Doula program was identified by the community to address the aforementioned barriers and provide culturally matched family navigation and social-emotional support while also acknowledging the unique experiences and values of caregivers of Black children with autism. Impact: The current project aims to assess the acceptability, feasibility, and preliminary effectiveness of the Autism Doula program and promote equitable care for Black children with autism and their families. Methods: Fifty-six Black families of children 18 months to five years of age who recently received a new diagnosis of autism spectrum disorder from CCHMC will be recruited to the current study. Twenty-six families will be randomly assigned to either the control group (i.e., care as usual including DDBP Family Navigation) or the intervention group (i.e., Autism Doula services). Feasibility and acceptability data will be gathered, including satisfaction of both groups, how many families approached agree to be in the study, how many sessions with the doula were successfully completed, and was the intervention content delivered as intended. Additionally, preliminary effectiveness will be evaluated by examining completion of recommended next steps, caregivers' perceived stress, and self-efficacy. Implications: Data from this project will provide evidence that the Autism Doula program is feasible, acceptable, and effective, ultimately demonstrating it as an equitable care approach for Black children with autism and their families. Future Directions: Findings from this pilot project will highlight the need for growth of the Autism Doula program to promote culturally competent care and health equity for Black children with autism and their families.

Подробное описание

The current project aims to evaluate a community driven, equitable intervention for Black children with autism. Specifically, we will assess the feasibility and acceptability of the Autism Doula program to enhance culturally responsive care and services for Black children newly diagnosed with autism and their families. The Autism Doula intervention will be measured in several ways, including number of families who complete the Autism Doula intervention, Autism Doula sessions successfully completed, content delivered as intended, and the satisfaction of the families involved in the intervention group. Additionally, preliminary effectiveness will be assessed by comparing the intervention group (i.e., families who receive Autism Doula services) to the experiences of families who receive care as usual including DDBP Family Navigation. Specifically, we will examine caregiver perceived stress levels, caregiver self-efficacy, and initiation of recommended next steps/services. We hypothesize that families receiving Autism Doula services will report high satisfaction with the program and that the program will be determined to be feasible and effective. Should results reveal acceptability, feasibility, and preliminary effectiveness of the Autism Doula intervention, additional funding will be sought out in collaboration with the Division of Developmental and Behavioral Pediatrics (DDBP) at CCHMC to expand the program. Aligned with the hospital wide initiative of incorporating family navigation into clinical care, DDBP leadership has made it a priority to provide culturally-response family navigation, similar to the Autism Doula program.

Вмешательства

• Другое Autism Doula
  The Autism Doula provides caregiver support, navigation with next steps for their child, connects families to resources and the Black autism community, and coordinates services to help alleviate caregiver stress (e.g., cleaning, cooking, respite care).
• Другое DDBP Family Navigation
  A one-time consult with a DDBP family navigator via telehealth to come up with an action plan for next steps for the patient's care.

Первичные конечные точки

• Autism Doula field notes [Срок оценки: from enrollment to end of doula program at 3 months]
• Satisfaction Survey [Срок оценки: end of the autism doula program at 3 months after enrollment]
• Chart Review Form: [Срок оценки: end of the autism doula program at 3 months after enrollment]

Вторичные конечные точки (2)

• Perceived Stress Scale (PSS) [Срок оценки: at study enrollment until after autism doula intervention (3 months)]
• Early Intervention (EI) Parent Self Efficacy Scale [Срок оценки: at study enrollment until after autism doula intervention (3 months)]

Критерии участия

Inclusion Criteria: caregivers of children who are 18 months to five years and recently diagnosed with autism. Caregivers must identify as Black and be over the age of 18 and identify their children as Black.

Критерии приведены из реестра в оригинале (на английском). Окончательную оценку соответствия проводит исследовательский центр.

Здоровые добровольцы: Нет

Дизайн исследования

Распределение

Рандомизированное

Модель

Параллельные группы

Маскирование

Открытое

Основная цель

Поддерживающая терапия

Центры проведения

США · 1 центр

• Cincinnati Children's Hospital Medical Center — Cincinnati

Публикации

• Hoagwood KE, Cavaleri MA, Serene Olin S, Burns BJ, Slaton E, Gruttadaro D, Hughes R. Family support in children's mental health: a review and synthesis. Clin Child Fam Psychol Rev. 2010 Mar;13(1):1-45. doi: 10.1007/s10567-009-0060-5. PMID 20012893
• Ogunwole SM, Bennett WL, Williams AN, Bower KM. Community-Based Doulas and COVID-19: Addressing Structural and Institutional Barriers to Maternal Health Equity. Perspect Sex Reprod Health. 2020 Dec;52(4):199-204. doi: 10.1363/psrh.12169. Epub 2021 Jan 5. No abstract available. PMID 33399272
• Castelin S, Okorodudu J, Smith T. Partnering With a Purpose: Promoting Equity and Justice for Black Children With Autism Spectrum Disorder. J Dev Behav Pediatr. 2024 Jul-Aug 01;45(4):e302-e308. doi: 10.1097/DBP.0000000000001276. Epub 2024 Jul 17. PMID 39023854
• Smith KA, Gehricke JG, Iadarola S, Wolfe A, Kuhlthau KA. Disparities in Service Use Among Children With Autism: A Systematic Review. Pediatrics. 2020 Apr;145(Suppl 1):S35-S46. doi: 10.1542/peds.2019-1895G. PMID 32238530
• Shaw KA, Bilder DA, McArthur D, Williams AR, Amoakohene E, Bakian AV, Durkin MS, Fitzgerald RT, Furnier SM, Hughes MM, Pas ET, Salinas A, Warren Z, Williams S, Esler A, Grzybowski A, Ladd-Acosta CM, Patrick M, Zahorodny W, Green KK, Hall-Lande J, Lopez M, Mancilla KC, Nguyen RHN, Pierce K, Schwenk YD, Shenouda J, Sidwell K, Vehorn A, DiRienzo M, Gutierrez J, Hallas L, Hudson A, Spivey MH, Pettygro PMID 36952289
• Fisher AP, Lynch JD, Jacquez FM, Mitchell MJ, Kamimura-Nishimura KI, Wade SL. A systematic review examining caregivers' of color experiences with the diagnostic process of autism spectrum disorder. Autism. 2023 May;27(4):876-889. doi: 10.1177/13623613221128171. Epub 2022 Nov 2. PMID 36321366
• Magana S, Parish SL, Son E. Have Racial and Ethnic Disparities in the Quality of Health Care Relationships Changed for Children With Developmental Disabilities and ASD? Am J Intellect Dev Disabil. 2015 Nov;120(6):504-13. doi: 10.1352/1944-7558-120.6.504. PMID 26505871

Идентификаторы

NCT: NCT06896942 · 2024-0473 · UL1TR001425

Первоисточники (государственные реестры)

• ClinicalTrials.gov (NIH, США)

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