What is Peer Support?

Peer support comes in many different forms, but on a basic level, it involves individuals with shared experiences (navigating similar challenges or a shared identity) providing and receiving support from one another [1]. At Generation Patient, our focus is on connecting young adults with chronic medical conditions (such as Crohn's disease, lupus, Lyme disease, rheumatoid arthritis, and more).

Different kinds of peer support — one-on-one connections, online social communities, hospital-based support groups, mentorship programs, chronic illness camps, school-based affinity groups, etc. — all serve different functions and meet different needs [2].

It’s important to note that there’s no "one size fits all" approach to peer support [3]. Even for individuals, support needs can fluctuate, which is why we think it’s important to recognize the many types of support that exist, and to empower patients to engage with the types of support that feel right for them!

Our Approach to Peer Support

Since March of 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 the challenges of young adulthood and chronic illness. All of our peer-support meetings are community-led, meaning that the facilitators leading discussions and activities are also young adults living with chronic medical conditions.

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.). Many of our meetings address topics like medical disclosure, coping with unpredictability, navigating stigma, treatment burnout, navigating friendships & relationships, or 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 our community forge deeper connections — even if chronic illness isn’t explicitly being discussed, group members are able to be in a space with others who understand the challenges they face.

Key Principles Behind Our Peer Support Meetings

• Shared experience: Our peer-support spaces are built on the principle of shared experience and solidarity. Everyone in our groups are peers or near-peers, and have lived experience as young adults with chronic medical conditions. While our community members have a wide range of conditions, experiences, and identities, we all share some inherent understanding around certain challenges brought about by young adulthood & 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 group member’s comfort, willingness to share, and overall sense of connection. 

• Validating the full spectrum of experiences: We recognize the importance of validating both positive and negative experiences associated with living with a chronic illness. We try to provide space for community members to discuss and acknowledge both challenges and strengths.

• Inclusive and accessible: We encourage self-advocacy, 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 Group Guidelines or our Peer Support Toolkit!

Evaluation and Research

While peer support has been a well-established form of care within certain mental/behavioral health spaces (i.e. addiction and recovery), it is still underutilized and underfunded in the healthcare world.

Emerging studies have shown that peer support can improve disease outcomes, mental health and psychosocial well-being, acceptance, resilience, disease management, self-efficacy, and treatment adherence [2, 4, 5]. However, research on peer support (specifically for our community, young adults with chronic conditions) is not extensive, and as as a result these resources are often seen as ‘extra’ or ‘optional’ aspects of our care. We believe that peer support should be an easily accessible and available resource for all young adult patients, and can serve an important role in our long-term care and well-being — particularly as a means of reducing the heightened isolation our demographic faces [6].

To begin addressing this gap, we’ve worked with researchers at Boston Children’s to understand peer-support needs/experiences within our community, and begin evaluating the impact of our peer-support program. We also created the Roundtable on Peer Support as an Intervention for Young Adult Patients, a two-year project exploring 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.