What is Peer Support?

Peer support is a process where individuals with shared experiences facing similar challenges come together to provide and receive emotional support [1]. Generation Patient’s peer-support meetings facilitate these supportive connections between young adult patients — i.e., young adults living with chronic medical conditions, such as Crohn's disease, lupus, Lyme disease, rheumatoid arthritis, and more.

Our peer support meetings are just one of many forms of peer support available for young adult patients, each serving different purposes. Other examples include more traditional in-person support groups, peer mentorship programs, camps, online social communities, and disability-affinity groups for university students [2]. Consequently, there is no universal "one size fits all" approach to peer support for all patients [3].

The support needs of those with chronic conditions can fluctuate, so it is important to recognize the variety of peer support options available, and to empower patients to engage with the types of support that feel right for them.

Our Approach to Peer Support

Since March 2020, Generation Patient has facilitated over 650 virtual peer-support meetings. We try to foster support, solidarity, and strategy sharing in our groups to help our community navigate challenges.

Most of our groups are “cross-disease” groups, and are open to young adults with any chronic condition. We think this is special, because it highlights the common experiences young people with chronic illnesses face, regardless of their specific diagnoses (ex: navigating school, starting a career, relationships, friendships, etc.). Our meetings address topics such as medical disclosure, coping with unpredictability, navigating stigma, treatment burnout, navigating friendships & relationships, and self-advocacy.

In addition to discussion groups, we also host more informal conversations, interactive workshops, game nights, and art activities. We find that this mix of offerings can help participants forge deeper connections with their peers — even if chronic illness isn’t explicitly being discussed, they are still around others who understand the challenges they face. All of our peer-support meetings are community-led, meaning that the facilitators leading these discussions and activities are also young adult patients living with chronic medical conditions.

Key Principles Behind Our Peer Support Meetings

• Shared experience: Our peer-support spaces are built on the principle of shared experience and solidarity. This means that the individuals providing support are peers or near-peers—young adults who have lived experience with chronic medical conditions. Our community represents young adult patients across disease groups, and while their experiences may not be identical, there is a lot of common ground between our community members and an inherent understanding of the various challenges we face trying to navigate this critical life stage with a chronic illness.

• Community-led: At Generation Patient, we think it’s important for young adult patients to create and lead these spaces. Our peer-support groups are entirely run by young adults living with chronic conditions. We've found that compared to provider-led groups (traditionally found in medical settings), having peer-led spaces can help reduce certain power dynamics, increasing patients’ comfort, willingness to share, and overall sense of connection. 

• Validating the full spectrum of experiences: We recognize the importance of validating the full spectrum of experiences—both positive and negative—associated with living with a chronic illness. Our peer-support groups provide a space for community members to discuss and acknowledge a range of experiences, challenges, and strengths. This validation helps participants feel seen and understood, empowering them to navigate real-world challenges more effectively.

• Safe, inclusive, and accessible: We encourage self-advocacy in this space, as well as community care—we take care of ourselves and each other in these spaces! We strive to create an open dialogue around accessibility needs, and encourage flexibility and creative solutions to meet the needs of our community.

Interested in learning more about our approach to peer support? Check out our Peer Support Toolkit!

Evaluation and Research

While research on the effectiveness of peer support is not extensive, available studies indicate its positive impact [2, 4, 5]. Unfortunately, peer support is still underutilized in healthcare settings, and there is a lack of research promoting its inclusion in the long-term care of young adult patients with chronic conditions—a gap that, if addressed, could significantly bolster disease acceptance and reduce isolation for young adult patients across disease groups. We are currently working with researchers at Boston Children’s to evaluate the impact of our peer-support meetings.

To further address this gap, we created the Roundtable on Peer Support as an Intervention for Young Adult Patients. This two-year project explored the existing literature, current challenges, and future opportunities to develop patient-centered research on peer support for young adults with chronic conditions. This roundtable was supported by the Eugene Washington PCORI Engagement Award Program, an initiative of the Patient-Centered Outcomes Research Institute (PCORI). Learn more about the details of our project and view our Peer-Support Research Resources here.