This roadmap offers general guidance on how to build and maintain a peer support program. Peer support programs help connect people who are dealing with certain health problems or situations with other trained peers (often called peer supporters) who have dealt with similar challenges. These programs bring together people so they can share experiences and support one another. Programs may be started by an organization, a group, or an individual person. Those who may find this roadmap helpful include:
- Researchers and program developers
- Health care and community leaders
- Health care and public health professionals
- Advocacy organizations and groups that actively support the interests of consumers and patients
- Patients, family members, and other caregivers
Development of the Roadmap
This Roadmap is the result of a two-year project funded by the Patient-Centered Outcomes Research Institute (PCORI, see glossary). The purpose was to learn what is needed to make a peer support program work and to compile a general how-to guide to start and run a program. The project team included researchers, patients, family caregivers, peer support program leaders, health care leaders and workers, consumers of health care services, and patient and family advocates. To begin, the project team partnered with seven well-established peer support programs in the United States. These programs are well-known, diverse in the problems for which they provide support, and based in health care or community settings. The project team looked at:
program structure, how programs are organized, and who is involved
how peer supporters are recruited, trained, and supported
how peer support is provided
success stories and potential challenges, and how these could be addressed
To develop the Roadmap, the researchers on the team started by interviewing partner program leaders and persons giving and receiving peer support. Program handouts and materials were reviewed and results of the interviews were studied to decide what information should be included in the Roadmap. A national workshop was then held with program staff and volunteers from the partner programs and other people who were interested in starting peer support programs. Key questions about peer support and ideas about what needed to be included in the Roadmap were discussed by workshop participants. The project team used a collaborative process to draft, review, and revise the Roadmap contents, repeating this process until the contents were approved.
Rationale Behind the Roadmap
This roadmap was developed to guide people working in research, healthcare, and communities in forming peer support programs, and preparing peer supporters within the programs to provide peer support. Studies show that support from a peer may help a person to cope or deal better with problems, and equip or encourage them to do things that could improve their health and outlook on life. However, peer support programs are still not widely available and have been limited to a small number of health problems or situations.
Potential Benefits of Peer Support
Potential benefits for a person seeking support are finding another person in a similar situation who has “lived the experience,” and being able to talk with them in a safe and judgement-free setting. People receiving support say they highly value a peer supporter who is a “living example,” of someone who has “been there” and has personal experience with the challenges they face, someone who is a living proof that people can live well with, or despite, the underlying issue.
Peer support may provide people receiving it (referred to in this Roadmap as program participants) with:
- Practical information and advice about managing their health problem (or situation) and how to live with it. This type of information and advice may not be provided by health care professionals or may be more easily received from a peer.
- Hope and less isolation.
- Insight about what may lie ahead.
- Someone who takes the time to listen and understand.
- A sense that what they may be feeling or going through is normal (or expected).
- Information about services in the community.
People giving peer support may experience special benefits as well. These include:
- Feeling good about giving back and being part of something that matters.
- Feeling stronger and having more faith that they can deal with hard times.
- Improving social skills, such as good ways to communicate and encourage others.
- Remaining engaged in a peer support system that promotes recovery and well-being.
Family caregivers and friends may find many of the same benefits from peer support as their loved ones (program participants) and may also benefit from peer support programs if these provide:
- A local resource of materials, information, and education to better understand potential options and insight into what may lie ahead.
- A way to connect with relevant community services and with each other for emotional support.
Peer support programs can also help health care professionals by endorsing the advice or guidance that they have provided (for example, lifestyle changes, sobriety, etc.) helping motivate program participants to adopt their advice.
This roadmap may serve as a general guide for anyone who wants to start a peer support program. There are different ways to start and run a peer support program. This roadmap organizes the work involved into four parts:
You may want to review and use all parts or just the sections that are helpful now, coming back to the roadmap as your program changes and grows. You may not have all four parts planned or outlined, and you may do some things differently, but the roadmap can be a reference with suggestions when you need it. This roadmap includes guidance from seven established programs. They all started small and grew to meet the needs of their participants and community, adding pieces included in this roadmap when they were ready.
The Four Parts figure depicts the four parts for building a peer support program and key points to consider within them. More details are included in the corresponding sections.
Suggested Roadmap citation: “ Aboumatar HJ, Kirley E, Lynch T, Bone L, Joo JH, Forte J, Holzmueller C. A Roadmap for Establishing Peer Support Programs in Research and the Real World. Baltimore: Johns Hopkins University; 2018. This project was funded through a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award (2463-JHU). Special acknowledgment to all project team, partners, and advisors for their valuable inputs into the development of this Roadmap.”