The Center on Community Living and Careers today announced that its director, Dr. Judith Gross, will join an international research consortium to deliver and evaluate new autism interventions in Kenya and Indiana.
Gross will travel to Eldoret, Kenya, from September 13–30, 2022, to work with a team of researchers and health care providers from the Academic Model Providing Access to Healthcare (AMPATH) partnership. Faculty members from Indiana University (IU) School of Medicine, University of Virginia, Moi University College of Health Sciences, and Moi Teaching and Referral Hospital aim to improve quality-of-life and social support for families in Kenya and Indiana who have a child diagnosed with an Autism Spectrum Disorder (ASD).
“Indiana University faculty members and researchers have worked alongside Kenyan colleagues for more than three decades to address some of the world’s greatest health challenges including HIV, cancer, and most recently COVID-19,” said Derek Nord, director of the Indiana Institute on Disability and Community at IU. “The lessons learned from this longstanding partnership have improved health and well-being in both Kenya and the U.S. Now we can use the power of this academic partnership to find creative ways of meeting the needs of children with autism and their families in low-cost, high impact ways.”
With an estimated 1 in 44 children in the U.S. now diagnosed with Autism Spectrum Disorder, early diagnosis and engagement with available interventions are crucial for improving a child’s developmental trajectory. These interventions are costly, and there are many barriers to accessing these services. Access is even more difficult for people in resource-limited settings such as rural Indiana and Kenya.
Led by Megan McHenry, assistant professor of Pediatrics at IU School of Medicine, the project has three objectives:
- Develop a group-based curriculum for caregivers of children with autism.
- Ensure the curriculum is culturally responsive in Kenya and Indiana.
- Evaluate if these interventions improve quality-of-life and social support.
“Autism is a one of the most common neurodevelopmental disabilities, occurring in all racial, ethnic and socioeconomic groups with a prevalence rate of 1–2 percent globally,” said Dr. McHenry. “There is a critical need for locally-adapted, community-based autism programs that train caregivers to support their children with autism.”
The September trip also includes Mandy Rispoli, Quantitative Foundation Bicentennial Professor of education and human development at the University of Virginia; Rebecca McNally Keehn, assistant professor of Pediatrics at IU School of Medicine and co-director of the Early Autism Evaluation Hubs in Indiana; Tonia Hassinger, long-time disability services administrator; and Laurel Stewart, behavioral consultant with Developmental Disabilities Systems Incorporated.
Working with Kenyan colleagues, the group will train Kenyan caregivers and begin to implement the intervention in a group setting with 20 families. They will evaluate quality-of-life and perceived social support networks at baseline, immediately post-intervention, and three months post-intervention. Implementation in Indiana with a virtual group format will occur later in the year.
The Kenyan implementation is the second phase of a research project supported by Reciprocal Innovation (RI) grants awarded to spur development of autism interventions that would be effective in both Kenya and Indiana. Reciprocal innovation is defined as harnessing a bidirectional, co-constituted, and iterative exchange of ideas, resources, and innovations to address shared health challenges across diverse global settings.
Awarded by the Indiana Clinical and Translational Sciences Institute and the IU Center for Global Health, the RI grants initially afforded the research team the opportunity to develop a virtual training curriculum for caregivers of children with autism. Further planning meetings in collaboration with Kenyan partners found that the curriculum would benefit from incorporating group sessions, building a sense of community to support parents who struggle with challenges related to autism care.
“Our long-term goal is to improve the quality of life and functioning of children living with autism and their families globally,” says Gross. It is apparent that the AMPATH program is an ideal setting for us to build a foundation to achieve our goal, and through this partnership we will leverage clinical populations who would be the ultimate target for benefit from development of an innovative caregiver curriculum.”
Effective, scalable caregiver training for autism care has the potential to be a transformative intervention for families who are unable to access services due to distance or other challenges. When effective interventions are available for autism care within western Kenya, then additional opportunities to identify more children in need of services and to advance the science of autism and disability may follow. The proposed work is an important step towards equity in improved care of children with autism on a global scale.
About the Center on Community Living and Careers
The Center on Community Living and Careers (CCLC) is one of seven centers at the Indiana Institute on Disability and Community, located at Indiana University in Bloomington, Indiana. Each center addresses issues that confront people with disabilities and works with communities to welcome, value, and support the meaningful participation of people of all ages and abilities through research, education, and service.
The CCLC focuses on the transition from secondary education to adult life, which includes accessing and navigating services, benefits, employment, person-centered planning, and community inclusion.
About the IU Center for Global Health
The IU Center for Global Health develops mutually beneficial partnerships across disciplines, schools, and countries for the primary purpose of creating and implementing sustainable programs that improve health and human flourishing in underserved areas worldwide.
The Center prepares a critical mass of health education and health research experts in these communities to become the next generation of local, national and global health leaders.
About the Indiana Clinical and Translational Science Institute
The Indiana Clinical and Translational Sciences Institute (CTSI) was founded in 2008 by Anantha Shekhar, MD, PhD. Recognized as a statewide institute, CTSI is supported by a Clinical and Translational Science Award from the National Institutes of Health (NIH) and the National Center for Advancing Translational Science.
Indiana CTSI has research partnerships with Indiana University, Purdue University, and the University of Notre Dame which also includes life sciences, businesses, and community organizations. Furthermore, Indiana CTSI engages with the public at every level of research from basic science to patient care.