image: Kessler Foundation research scientists Denise Fyffe, PhD (left), and Lauren Murphy, PhD (right), received grants from the Craig H. Neilsen Foundation to further novel research in spinal cord injury.
Credit: Kessler Foundation
East Hanover, NJ — April 3, 2024 — Scientists from Kessler Foundation received two significant research grants from the Craig H. Neilsen Foundation aimed at studying challenges faced by individuals living with spinal cord injury (SCI). Totaling $850,000, these grants will fuel groundbreaking investigations into understanding the social determinants of health experienced by racial/ethnic groups during wheelchair breakdowns and using real-time data to identify the impact of transportation insecurity in the lives of people with chronic SCI.
Denise Fyffe, PhD, Senior Research Scientist in the Center for Outcomes and Assessment Research and Center for Spinal Cord Injury Research, received a $550,000 grant to delve into wheelchair breakdowns, which represent a pervasive obstacle for individuals with SCI, severely impacting their mobility, independence, and overall well-being. “These problems are even greater among minoritized groups and traditionally underserved populations. Not enough is known about the lived experiences of wheelchair breakdowns, consequences, and repairs as they occur among racially/ethnically diverse persons living with SCI,” asserted Dr. Fyffe.
“Unfortunately, wheelchair breakdowns are an all-too-common occurrence for many persons with SCI, said Dr. Fyffe, adding, “Wheelchair breakdowns are one of the most limiting barriers experienced by wheelchair users with SCI, often leading to being stranded or isolated because they lack the mobility to be independent.”
By tracking participants' wheelchair repair journeys over time, Dr. Fyffe seeks to identify factors that facilitate or hinder the consequences of breakdowns, including emotional, cultural, and socioeconomic influences. Through in-depth interviews and data analysis, the study will inform the development of targeted interventions to alleviate barriers and enhance resources for wheelchair users from diverse racial and cultural backgrounds.
Using real-time data
With her $300,000 grant, Lauren Murphy, PhD, research scientist, Center for Outcomes and Assessment Research, is spearheading research that focuses on transportation insecurity, a lack of accessible transportation options for individuals with chronic SCI. “Many people living with SCI report limited opportunities to participate in their communities, and a lack of transportation can increase this risk,” said Dr. Murphy. “There has been very little research on barriers to transportation access or the consequences of these barriers for people living with SCI,” she added.
Dr. Murphy is testing a research method called ecological momentary assessment (EMA) for identifying specific factors that promote or hinder access to transportation for people living with SCI and assessing the role of these factors in their community participation, employment, and access to healthcare. “EMA involves collecting ‘in-the-moment’ observations of experiences as they occur in real time and place,” explained Dr. Murphy, adding, “By utilizing a smartphone application, participants will report on the factors influencing their transportation access and the consequences for their daily activities, employment, and healthcare access.
“Compared to traditional methods like retrospective questionnaires, which require participants to recall events from the past, EMA allows participants to report on their experiences in the present moment with a greater level of accuracy and detail,” concluded Dr. Murphy. This information can help local transit authorities improve existing strategies to make transportation accessible for people with disabilities like SCI and also lay the groundwork for researchers to conduct larger studies to improve community inclusion for people with SCI who have limited access to transportation.
Funding: The Craig H. Neilsen Foundation Grant #1145288 (Murphy) and Grant #1148245 (Fyffe).
About Craig H. Neilsen Foundation
The Craig H. Neilsen Foundation's funding is dedicated to supporting both programs and scientific research to improve the quality of life for those affected by and living with spinal cord injury. Craig H. Neilsen established the Foundation in 2002 to award grants to a broad spectrum of charities, including those that benefit spinal cord injury efforts. Today, the vision of the Foundation is such that individuals with spinal cord injuries, and those who care for them, live full and productive lives as active participants in their communities. Learn more by visiting chnfoundation.org.
About Kessler Foundation
Kessler Foundation, a major nonprofit organization in the field of disability, is a global leader in rehabilitation research. Our scientists seek to improve cognition, mobility, and long-term outcomes, including employment, for adults and children with neurological and developmental disabilities of the brain and spinal cord including traumatic brain injury, spinal cord injury, stroke, multiple sclerosis, and autism. Kessler Foundation also leads the nation in funding innovative programs that expand opportunities for employment for people with disabilities. For more information, visit KesslerFoundation.org.
Press Contacts at Kessler Foundation:
Deborah Hauss, DHauss@kesslerfoundation.org;
Carolann Murphy, CMurphy@KesslerFoundation.org.
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