Peer support is a health intervention through which an individual receives guidance from a person who has lived with a similar condition—someone who can share first-person understanding and strategies that a clinician often can’t. Peer support may be given in group or one-on-one settings, by people who share a wide range of health conditions, including intellectual and developmental disabilities (IDD) and autism spectrum disorder (ASD).
“It’s underutilized, but research has identified that when peer support is provided by individuals with IDD, it can be quite effective,” says associate professor of health and rehabilitation sciences Beth Pfeiffer. “It has been shown to improve outcomes in areas such as independent living, socialization and relationships, and employment for people with IDD.”
With two new grants, Pfeiffer will explore ways to enhance the use of peer support in interventions aimed at young adults with IDD and ASD. One grant project, funded by the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR), is designed to assist people with ASD who are working. Pfeiffer will refine a program her team co-developed that is aimed at incorporating peer support to increase knowledge among people with ASD about staying safe from infectious airborne diseases on the job. A separate grant, from the Patient-Centered Outcomes Research Institute (PCORI), will fund a study by Pfeiffer to explore ways that people with IDD can themselves be part of shaping studies that can lead to improved delivery of peer support.
Pfeiffer’s work focuses on improving community participation opportunities for young adults with IDD. In addition to teaching and researching in the Department of Health and Rehabilitation Sciences, she maintains a clinical practice in pediatrics, and she directs the College of Public Health’s Research, Engagement and Advocacy for Community Participation and Health (REACH) Lab, which works with local organizations to increase community participation, including employment, for people with IDD.
Many people with IDD lost work during the pandemic, but many also remained employed in essential, front-line jobs, Pfeiffer says, where they became vulnerable to infection. Under the NIDILRR grant, Pfeiffer’s team and Philadelphia-based Community Integrated Services, an employment service for people with disabilities, will refine a program they have co-developed to meet the health needs of workers called SAFE. The program is innovative in the way it addresses specific barriers to adhering to protective practices experienced by people with ASD, Pfeiffer says. Examples include targeted instruction of handwashing techniques and addressing the sensory challenges associated with wearing a mask.
“The idea is to provide them with the information and resources they need to be able to advocate and keep themselves safe in their work environment,” Pfeiffer explains.
The SAFE program initially was implemented using a staff-led delivery method but is currently being expanded to be delivered through peer support. Peer supporters with ASD (and IDD) are trained in program delivery and then train others using the program curriculum.
“Some of the information we're gathering is looking at how we can use peer support to implement the program,” Pfeiffer says. “So peers with autism can help implement the program and support other people to be able to advocate for themselves.” An iterative process will focus on developing targeted messages and content that are relevant to current (COVID-19) and future (e.g., influenza, novel coronaviruses) health issues for individuals with ASD in the workplace.
The PCORI grant is what’s known as an engagement award; in this case, Pfeiffer’s study will explore ways to engage young adults with IDD in the research process itself.
“We will be gathering information about how to best include people with intellectual and developmental disabilities in research,” Pfeiffer explains. “Not just as participants in studies, but as research team members who are going to contribute to developing questions and ideas and give feedback.”
Through a review of existing literature and interviews with stakeholders, the study will work to identify research priorities for using peer support interventions with transitional age youth and young adults.
“How should we be using peer support interventions? What are the priorities of people with intellectual and developmental disabilities for this type of research?” Pfeiffer explains. “Along with gathering that information, we’ll be developing online training, so people can learn how to use peer support as a way to include people that matter in research that matters to them.”