In October, OAR’s Board of Directors authorized funding for eight new applied autism research studies in 2019. These new grants, totaling $228,036, bring OAR’s total research funding to over $3.7 million since 2002. This is the first of eight previews to be featured in The OARacle this year.
Transition-age (age 18 to 24) individuals who are on the spectrum, minimally verbal and living in a low-income household often have complex healthcare needs. Transitioning from pediatric care to adult health care can be a tremendously difficult and confusing transition to make, especially when faced with communication barriers and financial constraints. Healthcare transition services help maximize life-long functioning and potential by providing continuous healthcare, yet only 21 percent of people with ASD receive them.
In this OAR-funded study, principal investigator Elizabeth McGhee Hassrick, Ph.D., will examine the specific communication and care coordination challenges involved in the healthcare transition for young adults from low-income households. The results of the study, “Care-coordination Factors Affecting Post-secondary Outcomes for Minimally Verbal Young Adults with Autism,” will inform healthcare practices so they can improve healthcare transition services for this group.
Dr. Hassrick is an assistant research professor at the A.J. Drexel Autism Institute at Drexel University in Philadelphia. She will be working with two co-principal investigators and a co-investigator:
In 2015, the A.J. Drexel Autism Institute received an OAR grant to support a study about post-secondary outcomes for young adults on the spectrum. That study found that transition support networks were sparse and employment supports and connections with healthcare providers were exceptionally rare.
The multi-method study consists of:
The research team will recruit young people and caregivers from the Center for Children and Youth with Special Healthcare Needs at St. Christopher’s Hospital for Children. The Center serves 87 minimally verbal youth with autism in a low-income, racial/ethnic minority urban community, 35 of whom are over the age of 12 and eligible for the study.
The research team will employ a case study approach with five patients and their caregivers. That approach provides a means for the researchers to understand the intersecting perspectives surrounding the care of a patient with complex healthcare needs, possibly living in a low-income household, who is transitioning to adult care with multiple different providers. In addition to interviewing each patient when possible, the team will collect information from several sources, including caregivers, healthcare providers, clinic staff, service providers and community partners, allowing a holistic picture of how transition works, needs involved, and successful strategies in making the transition.
To better understand care coordination, service provision, and resource utilization in the hospital context, the researchers will administer a social network online survey, which provides information and data about the relationship patterns among people. In the case of this study, survey participants will include five caregivers, five minimally verbal youth (if possible), four physicians, a nurse practitioner, a physician assistant, a transition nurse care coordinator, five additional registered nurses and care coordinators, a dietitian, a community health worker, four social workers, an attorney for issues such as guardianship, six administrative staff, and three medical assistants.
The study’s findings will help clarify the specific challenges to transition for this vulnerable population, identify existing social network supports and gaps in services, and inform recommendations and healthcare practice guidelines that can be adopted more broadly.
About 13,000 minimally verbal youth with autism turn 18 each year in the United States. Understanding their challenges and experiences in navigating their healthcare transitions will enable recommendations for healthcare practice guidelines. More broadly, it is a step in highlighting the importance of better understanding how to adapt transition services for specific populations.
Few studies have previously examined the healthcare transition experience from youths’ perspectives, particularly those who are minimally verbal. Gathering their direct perspectives on transition can have tremendous value for identifying needs, improving services, and facilitating independence. By sharing the methods used to include these patients, the researchers are also taking an important step toward more inclusive research.
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