UNIVERSITY PARK, Pa. — Jessica Wellington, a doctoral candidate at the Penn State Ross and Carol Nese College of Nursing, received the National Institutes of Health (NIH) Ruth L. Kirschstein National Research Service Award to fund a project focused on parental caregivers of adults with profound autism. According to the Centers for Disease Control and Prevention, about 5.5 million adults in the U.S. have been diagnosed with autism, with more than a quarter of that population considered profoundly autistic, meaning they often have severe intellectual disabilities, with little to no functional communication and require 24-hour care from their caregivers.
The Ruth L. Kirschstein National Research Service Award is a distinguished fellowship award supporting promising predoctoral students in obtaining research training while conducting dissertation research in scientific health-related fields. By funding integrated research and clinical training, the projects selected for funding demonstrate high potential for helping to advance health care, public health and research.
In the three-year study, funded by the National Institute of Nursing Research, Wellington seeks to inform future policy, health care interventions and support services for those caring for individuals with profound autism. These caregivers are facing increasing pressures of their own aging, a lack of resources and support, as well as financial strain — stressors that Wellington said could harm the caregivers’ own wellbeing, as well as their caregiving ability.
“The goal of the study is to identify the supports and resources that parental caregivers need to provide high-quality care for their loved ones — improving not only the caregiver’s wellbeing but also creating a ripple effect that benefits the person they’re caring for,” Wellington said.
Wellington will interview U.S.-based caregivers to quantitatively and qualitatively assess their wellbeing and to better understand the different social determinants of health and caregiving factors that impact their experiences. Participants will be asked questions such as rating their quality of life on a scale of one to five, with five signifying high satisfaction, as well as open-ended questions such as, “How does your financial situation impact your caregiving responsibilities?” and “Do you feel personally fulfilled as a caregiver?”
Wellington will analyze the answers to identify and explore the factors that caregivers say improve their experiences. By building on existing research on caregivers, Wellington said she hopes her research can help inform development of caregiver-focused interventions and expand options for long-term care and behavioral support.
“After a child turns 18 and becomes an adult, there isn’t much support. I believe aging in place together is such a valuable thing for both the parents and their child — but they need the support to do so,” Wellington said. “So, how do we make long-term solutions for these families, so that they feel secure when they are no longer able to provide care?”
Wellington has a background in nursing working with children with autism and in long-term adult care settings. She expressed gratitude to Marie Boltz, Cara Exten, Jocelyne Anderson and Diane Williams for their mentorship, and said she plans to continue her research in a postdoctoral role, with hopes of building a program centered on developmental disabilities.
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