The Family Care Project: Creating Autism Access for Culturally Diverse Families
TRANSLATIONAL SCIENCE BENEFITS MODEL PROFILE
Summary
Early, specialized support is important for helping young autistic children learn and develop. However, families from different cultural backgrounds often find it challenging to access needed services. The UW READi Lab partnered with a non-profit community organization, Mother Africa, to create a new way for diverse families to access autism services.
We used a co-design approach with Mother Africa to identify their needs and potential strategies for increasing their autism awareness and identifying potential supports. We obtained feedback from a variety of people involved in autism care, including Mother Africa service providers, community leaders, and caregivers. Twenty-three individuals participated in eight co-design sessions that were two hours each. Participants were from different language groups, including Somali Mai Mai, Swahili, Arabic, Dari/Pashto, French, Amharic, and Tigrinya. These sessions helped us identify five important strategies for improving access to needed services: reducing stigma around autism; being mindful about cultural differences between groups; empowering caregivers; providing information and support for accessing services; and ensuring that the services were practical for use.
Based on what we learned from these conversations, we developed a new pathway for families to access autism care, which we called “The Family Care Project.” These materials were vetted by the Mother Africa participants and revised as needed. The final version provided suggestions for caregivers about navigating the medical and educational systems, as well offering culturally-appropriate strategies for parenting autistic children and maintaining their own self-care. These materials were specifically designed for use within this non-profit community-based organization and were translated into the six languages commonly spoken by Mother Africa communities. Non-profit organizations often have trusting relationships with diverse families, making them an ideal setting for the program. This project shows how working together with communities can create more fair and effective ways to provide autism support.
We also tested how effective this new pathway was for connecting families to services, and whether people without medical training could use the Family Care Project materials with families. Six non-profit workers who speak Swahili, Amharic, Tigrinya, Dari, Arabic, Somali MaiMai, and French, completed a self-paced, web-based training about how to use the Family Care Project. After completing the training, they delivered the curriculum across four sessions to 35 families who have children with increased autism likelihood. When the test project ended, community caregivers reported that families had used the used autism services. The non-profit workers also felt that the program was easy to use and fit with their current roles at Mother Africa. Family members said the Family Care Project helped both them and their families.
Significance
The Family Care Project is a low-cost educational and navigation service that was easy for providers to use, relevant for families, and supports caregiver and child well-being. The Family Care Project has the potential to increase the ways that families with young children at elevated likelihood for autism can connect to services that improve outcomes for their children. We hope the materials can be tailored to fit additional cultural groups and thereby support an even greater number of underserved families and communities.
Additionally, this project may also serve as a model for future research using co-design and task-shifting approaches. By developing a power-sharing partnership with Mother Africa, this project showed how academic-community relationships can help solve problems in ways that best match the needs of the communities they serve.
Benefits
- Demonstrated benefits are those that have been observed and are verifiable.
- Potential benefits are those logically expected with moderate to high confidence.
The study team created reproducible guidelines and educational materials that support caregiver and child well-being in culturally and linguistically diverse communities.
Demonstrated.
Clinical Benefits:
The training program promoted the use of evidence-based procedures for providers to use while discussing difficult topics with families
(e.g., validation, reinforcement).
Demonstrated.
Clinical Benefits:
The study team produced a 40-page workbook translated into six languages for use with CLD families to facilitate early autism.
Demonstrated.
Clinical Benefits:
The Family Care Project created resources for community providers and caregivers to use to support CLD children who have social-communication delays or autism.
Demonstrated.
Community Benefits:
The Family Care project was a collaborative effort that created culturally and linguistically appropriate resources to promote families’ understanding of child behavior and health care.
Demonstrated.
Community Benefits:
This project facilitated access for CLD families to healthcare and education.
Demonstrated.
Community Benefits:
Our project models new public health practices for developmental surveillance of underserved young children.
Potential.
Community Benefits:
Early detection of autism and supplying specialized services has been shown to improve the quality of life for both affected children and their families.
Potential.
Community Benefits:
We built capacity for health care delivery using lay providers within the setting of a non-profit organization.
Demonstrated.
Community Benefits:
The cost of establishing the program will be far less than the burden of the condition on parents and caregivers.
Potential.
Economic Benefits:
As some medical burdens shift to social costs, this project has the potential to increase the quality of life and decrease barriers to early identification and treatment.
Potential.
Economic Benefits:
The Family Care project has the potential to decrease the cost of treating children with autism into adulthood through early diagnosis and provision of resources.
Potential.
Economic Benefits:
This project is likely to result in publishing scientific papers.
Potential.
Policy Benefits:
The Family Care project built upon the strengths of the research community and the expertise of community members connected to Mother Africa.
Demonstrated.
Community Benefits:
Community-Engaged Research (OHSU defined benefit)
This project is likely to promote the careers of two young investigators.
Potential.
Economic Benefits:
Career Access (Duke defined benefit)
This research has clinical, community, economic, and policy implications. The framework for these implications was derived from the Translational Science Benefits Model created by the Institute of Clinical & Translational Sciences at Washington University in St. Louis.
Funding
Pilot project funding was provided by the Institute of Translational Health Sciences headquartered at the University of Washington, NIH Grant UL1 TR002319.
Research Team
Shana Attar, MS and Hannah Benavidez, MS Wendy Stone, PhD
READi Lab (https://uwreadilab.com/), University of Washington
Community Partners:
Carol Gicheru, BA, Colleen Alabi, MS, Risho Sapano, MS
Mother Africa (https://www.motherafrica.org/)