Examples of Peer Support

To address the unmet needs of the college students with Type 1 diabetes, CDN focuses on identifying, building as well as strengthening supportive networks which are known as “chapters” at schools. Rooted in peer support, chapters are created and run by student volunteers and aim to provide a way for students to meet in person and connect, talk, laugh, and vent about life with diabetes on campus. CDN invites existing groups to join the CDN network which is to be registered as a CDN chapter, and also helps walk students through how to start one if there is not yet a group on campus. There is an online directory housed in the CDN website so the students can easily locate a chapter at their schools. CDN supports its chapters by providing up-to-date information tailored to the needs of college students, and offers web-based utilities (e.g, webpage, CDN email address that can be passed down as students graduate). CDN currently has about 19 chapters located throughout the country and one in Canada. All of these chapters are different and based on what each particular group and their members are interested in. However, CDN does offer support and suggestions as to different events, meetings, speakers, etc. With growing recognition of the CDN’s organization and collaborative efforts on a local level, CDN will be able to help individual chapters to more fully and permanently establish themselves both in the community and on campus.

Another key focus of CDN is to develop web-based resources to maximize impact. The CDN website (http://www.collegediabetesnetwork.org/) intends to be the hub where students with diabetes and their stakeholders can get needed information and connect with each other. With various audiences’ needs in mind, the types of information and functionalities are different. For students, it targets all aspects of life with diabetes on campus, including scholarships, studying abroad, nutrition, exercise, research, and available technologies. It provides student volunteers advice on starting and running a chapter. Web-based discussion boards offer parents the opportunity to connect with each other and cope effectively with the transition of having their children move away from home.  CDN is updating the section for university administrators on how they can proactively implement changes to make life on campus less challenging for students with diabetes.

Within only a few short years, CDN has grown from a small student group run by a full-time college student in 2009 to a national non-profit organization. This is due to not only an increasing interest from both the student population and professional organizations, but also its willingness to collaborate with others. CDN has collaborations with many major organizations in the diabetes community, and showcases the resources that other organizations already have available. Also, CDN is currently working with University of Massachusetts Amherst, Dr. Emma Dundon of the nursing department, Baystate Children’s Hospital, and Big Brother Big Sister of Hampden County to develop a diabetes mentor pilot program.  Through this program, students with Type 1 diabetes will receive academic credit to be a mentor to a child or adolescent with diabetes in the Springfield, MA area. This collaborative project aims to collect data on mentors, mentees, and the effect of the relationship on both and hopefully can provide the scientific foundation enabling CDN to recreate similar projects in affiliation with other chapters across the country.

As next steps, CDN plans to further grow the chapter base through early intervention with high school students prior to leaving for college by collaborating with health care centers, other organizations, and the diabetes online community.  CDN is also hoping to implement an annual CDN retreat, where chapter leaders and CDN members are able to get together and discuss ways in which chapters can empower other students living with the disease. This will be an opportunity to discuss chapter management, collaboration with local organizations and community groups in order to help chapters establish themselves, and ways to better serve their present and future members. Last but not least, within the next few months CDN will have a published “Chapter Toolkit” – a step by step guide on how to start, establish, and run a chapter. Upon its completion, this “Chapter Toolkit” will be shared on the Peers for Progress website.

To learn more about the CDN, please visit http://www.collegediabetesnetwork.org/, or contact Christina Roth (croth@collegediabetesnetwork.org), Founder and President of CDN.

  >Close

Cancer Connect in Victoria, Australia is part of an Australian and New Zealand wide telephone-based peer support program, Cancer Connect.  The program links people affected by cancer from all over Victoria- people with cancer, their parents and family care givers, and individuals with an inherited cancer gene- to a specifically-trained volunteer who has been through a similar cancer experience. The program, hosted by Cancer Council Victoria, has over 160 trained volunteers across a variety of cancer experiences.   Since the Cancer Connect program first started it has changed significantly, now representing over 33 cancers, and will continue to evolve, providing a “friendly voice and an anonymous face’ from someone who can listen, can understand; someone who has been there themselves”.

The peer-support volunteers are trained to listen to concerns and provide understanding and emotional support to help people through their cancer journey. In addition, practical advice on broad issues such as career, intimacy, or personal fatigue can prove invaluable for patients and their families alike. Depending on the support recipient’s needs and circumstances, the number of support calls can vary from 1 to 5 per volunteer for each of their referrals.

Peer-support volunteer recruitment and training is strategic and targeted toward addressing program areas of greatest demand and changing cancer treatments. Cancer Connect volunteers are, for quality assurance purposes and/or supportive care considerations, at least two years post cancer experience and must have successfully completed a three-day training program. They are also required to attend seven hours of ongoing training per year.   Volunteers are asked to review their commitment in providing peer-support every two years as part of the program’s quality assurance process. The program’s quality assurance policies and procedures aims to maintain a high standard of peer support. The training curriculum for telephone peer-support volunteers covers their rights and responsibilities, the organization’s policy and procedures in addition to effective communication skills, active listening, and self care.

A key aspect of the program is liaising and working with other cancer organizations, health professionals and cancer treatment centers. The Cancer Helpline, which is heavily promoted, is a key entry point for accessing Cancer Connect peer- support volunteers.  The trained oncology nurses, who operate the Cancer Helpline obtain information from the caller to assist matching a trained Cancer Connect volunteer who has had a similar cancer experience as the Helpline caller.  In 2009, almost 1000 referrals were made to Cancer Connect volunteers.

Additionally, Cancer Connect highly value opportunities to learn from and exchange with other organizations, and have greatly benefited from this type of activities. Since 2008, Cancer Connect been an active member of the Chronic Illness Peer Support Network. This is a unique network by the Chronic Illness Alliance for organizations offering peer support programs in Victoria. The Peer Support Network was developed as a result of an identified need recognized by various organizations to provide a forum for members to support each other, share information and knowledge. In 2009, the Peer Support Network developed “Best Practice Framework” which covers all aspects of developing and managing a peer support program. In October 2010, Cancer Connect in Victoria presented at the Peers for Progress global conference: Diabetes, Peer Support, and Global Programs: Looking Forward with Peers for Progress and Broader Research Partners, and is now also a member of the Peers for Progress global network for peer support organizations. The presentation can be found here.

The program in Victoria has been formally evaluated three times since 2001 and has consistently found a high level of satisfaction among people accessing the service and its volunteers. Coinciding with the research, program participants often tell the Program Managers that speaking to a Cancer Connect volunteer helped them feel ‘reassured’ and ‘encouraged’. In March 2011, Cancer Connect Communication Skills training was conducted in Kuala Lumpur for the National Cancer Society of Malaysia and the Malaysian Ministry of Health. Positive feedback was received by the 80 participants consisting of doctors, cancer nurses, cancer survivors, carers and support volunteers. The success of the program also reflects on its ability to recruit new volunteers. Shared by 6 former support recipients who recently started volunteering, the choice to rejoin the program as a volunteer was made because they wanted to give back, and make a difference to someone affected by cancer because of the wonderful peer support that they had received themselves. As a volunteer-based peer support program, its dedication and ability to provide high quality of peer support has become a key to the program’s long-term sustainability.

For more information, please contact:
Trish Waters (Trish.Waters@cancervic.org.au ), Cancer Connect Program Development Manager, Cancer Information & Support Service, Cancer Council Victoria

Please also visit http://www.cancervic.org.au/how-we-can-help/talk-to-someone-about-cancer/cancer_connect

  >Close

The PHSKC CHWs use the model of chronic care self-management which acknowledges common elements of disease management (such as understanding and coping with disease), developing self-management skills, communicating effectively with the health care team, coping with stress, developing social support and utilizing community and health system resources. Specifically, CHWs provide home visits to identify barriers to disease management, assess home environmental and social conditions, assist participants in making disease self-management behavior changes, facilitate communication with health care providers and provide links to varied resources such as low-cost or free medication, link-ups to health care and home remediation services.

In the PHSKC programs, CHWs speak the languages of the community they serve (English, Spanish and Vietnamese), and are recognized by study participants as being “of their community” because they share values, traditions and practices. They translate the advice from medical professionals about “what needs to be done” regarding disease management into the “how it can be done” that fits with the client’s traditions and practices. Using motivational interviewing to identify changes the client is most ready to make and setting achievable and incremental goals toward disease management is a successful combination.

PHSKC has devoted tremendous effort into developing tools for community health workers programs such as guidelines addressing when to ask for help and advice and how to communicate with health care providers, and CHW training materials (e.g., motivational interviewing techniques). More resources can be found at Tools for Community Health programs and Community Health Worker (CHW) Training under HomeBASE tools and documents on the PHSKC website.

Through grant-funded programs from National Institutes of Health, Robert Wood Johnson Foundation and Centers for Disease Control and Prevention (CDC), over 2,000 people with asthma or diabetes have completed the PHSKC programs. Evaluation data from their Healthy Homes I &II randomized controlled trials with a diverse pediatric population with asthma, showed that focused CHW home visits significantly reduced urgent care visits, improved caregiver quality of life and increased symptom-free days.

The success of the PHSKC programs can be attributed to the use of structured quality improvement methods to develop systems to efficiently manage home visits and ensure their quality.  They have implemented data systems that monitor client recruitment rates and timeliness of home visits and monthly chart audits and visit observations to assure adherence to protocols.  Biweekly clinical and administrative staff meetings provide opportunities to review data benchmarks and program protocols and address clinical and social issues encountered by the CHWs.”

The testimonials from participants reinforce the benefits of peer support demonstrated by their programs and, in particular, the influence CHWs have had in motivating behavior change in clients.

“A woman with poorly controlled asthma reported to her doctor that she was taking her asthma controller medication as prescribed when she actually was not using it, thereby baffling the doctor as to why her asthma remained uncontrolled despite his best efforts.  The CHW explained the role of controller medication and that her health was being compromised by not using it. The woman started taking her controller, let her doctor know she had not been using it, and now her asthma is well controlled.”

“ A 9 year old child with daily symptoms and daily rescue use had asthma that was triggered by a cockroach infestation and by lack of heat in his home.  The CHW worked with the family on roach abatement and helped them get signed up for utility assistance.  The child is now symptom free and has not needed his rescue medication for 2 months.”

“ A school janitor’s asthma was triggered by the chemical cleaners used at his worksite.  With the CHWs help, he asked his employer if he could research and try other cleaning agents.  The employer was so impressed with the janitor’s research and a recommendation that he changed the school’s cleaning policy so cleaning agents that were healthier for people and for the environment were used.”

Due to the model’s success, PHSKC has received a new translational grant from CDC, which is measuring the ability to implement this research-proven approach into community clinic settings and describe its cost effectiveness.

To learn more about the PHSKC’s CHW programs, please visit Asthma Resources at http://www.kingcounty.gov/healthservices/health/chronic/asthma.aspx and Reach Coalition for Diabetes at http://www.kingcounty.gov/healthservices/health/chronic/reach.aspx

 
 >Close

The demonstration project was a community-based model of peer support that took place in three cities in Anhui: Hefei, Tongling, and Bangbu. Zhong identified subcommunities in each community and recruited 726 eligible participants with type II diabetes. Subcommunities were randomly assigned to intervention and comparison groups, with the comparison groups receiving standard care with a routine educational component.

In the intervention, groups consisted of 10 to 15 individuals who lived within close proximity and were led by a peer supporter nominated by the Community Health Service Center (CHSC). The peer supporters were usually retired members of the community who had lived with diabetes for a relatively long time and were in compliance with medical advice. After training, they were tasked with facilitating discussions on issues of interest and promoting better self-care in the lives of participants. In contrast to many peer support programs, 16 of the 19 peer group leaders were men.

A key feature of the program took advantage of the fact that the participants lived near each other and all knew each other.  As a result, smaller, informal groups emerged from the formal group settings, and participants began to shop together, exercise together, and even fish together.  Interviews with participants indicated that these informal group activities were an important source of support for participants.

Preliminary findings of the study indicate that the peer support model is both applicable and effective within the Chinese context. Both support providers and receivers received tangible benefits, including increased knowledge and awareness, improved diet and physical activity levels, and better glucose monitoring.

The testimonials from participants reinforce the benefits of peer support demonstrated by the study and, in particular, the importance of social and emotional support. A 61 year old woman commented,

“…I became sick two years ago, and when I found out I had diabetes, I felt upset, and thought that my life was meaningless. When I joined the peer support group, I discovered that many people had the same illness as me, and some people in our group had been living with diabetes for more than 20 years. They lived very well, and now they are more than 80 years old, so it encouraged me to believe that I too can live a long and healthy life if I can control my blood sugar and manage my life suitably.”

Kate Lorig’s Chronic Disease Self Management Program has been adopted in several settings in China.  However, to our knowledge, this study is the first in China to emphasize peer support outside of formal group meetings and through individual contacts with the peer group leaders and the informal activities emerging from the groups.  Amidst reticence to burden one’s family, the contacts with peers appeared to provide a more acceptable outlet for sharing emotions and concerns regarding diabetes. Due to Zhong’s role as a professional in the Anhui province Chinese Centers for Disease Control, the program was able to recruit resources both from the CDC and the government health service. Following the demonstration project, the “peer support group ” approach has been integrated as a routine component of the community chronic disease management in these three communities. Zhong hopes to expand upon these findings beyond these communities and use the positive results as a means of promoting peer support into standard care.

  >Close

Post-measures indicated that the average A1C of participants dropped significantly, as well as diastolic blood pressure. Survey items showed changes in dietary behaviors in a positive direction. Participants found that the peer champion program was helpful in encouraging contact with the clinic, offering helpful advice and encouragement, and providing information about diabetes. What was not anticipated at post-test were lower perceptions of support from family and friends and confidence in managing diabetes at post-test. The lessons learned from this pilot study allow for continued efforts to offer peer support programs in this low-resourced setting and other similar settings.

For more detailed information about the training of peer supporters, the benefits and challenges of the mobile network, the results of this pilot study and the implications for delivery of peer support in similar settings, read more.

Summary

Key Roles and Responsibilities of Peer Supporters

• Provide supportive communications, such as active listening, asking questions about emotions and feelings
• Encourage the partner to seek healthcare advice when appropriate

Key Peer Supporter Training Activities

• Develop two versions of the education booklet: one for the Champions and one for the peer Partners. * Note that the Champion version has more content on supportive communication
• Host a Peer Champion and Peer Partner training day.

Key Peer Support Interventions

• Weekly contact between peers both through phone and face-to-face contact over a period of 4 months
• Interaction and discussions among the program participants occurred during educational meetings provided by the clinic staff

Key Accomplishments

• 100% of the participants reported making peer contact
• 71% increased contact with the clinic
• Significant improvement: healthy eating, blood pressure (DBP), A1C, linkages to care

Lessons Learned

• Peer support was reciprocal, e.g. both provided and received support.
• A cell phone network can enhance management of diabetes; however, economic challenges (e.g., no electricity to keep a phone charged) could impede its value-added.
• Cultural and contextual issues matter–

1. Without phones, participants preferred being partnered with someone who lived near them over someone of the same gender.
2. Due to a low level of English proficiency, participants preferred Luganda for written and oral education. However, because of other tribal languages, Luganda did not benefit all participants.
3. Due to a high rate of poverty, participants required payment for transportation to participate.
4. Opportunities to learn more about diabetes and to have written information were highly valued benefits of participation.

Program Presentations

• Peer Support for Diabetes in Rural Uganda: Does it Work? (Oct, 2010 at the 2010 Peers for Progress Global Conference by Linda Baumann, PhD, RN, FAAN)
• Peer Support for Adults with Diabetes in Rural Uganda: Champions and Partners (Aug, 2010 at the 11th International Congress of Behavioral Medicine by Linda Baumann, PhD, RN, FAAN)

Program Materials

• Peer Partner Training Booklet in both English and Luganda

Research Publications

•  Baumann, LC, Frederick, N, Betty, N et al. (2014). A Demonstration of Peer Support for Ugandan Adults With Type 2 Diabetes. Int J Behav Med.

  >Close

To ensure active community input in development of the guide, the Project engaged the help of local residents and community organizations through regular meetings. An advisory group provided an outline for the guide, and multiple actors within the community including residents and literacy groups worked to ensure its appropriateness for the Black Caribbean community.

The completed guide, made by the community and made for the community, can be found here.

The second goal of Live, Learn and Share, to train community members to be facilitators for peer support groups, was accomplished through the recruitment and training of 16 Black Caribbean community residents with diabetes. They attended a four month series of weekly workshops aimed at providing them with an understanding of both the peer support model and knowledge about diabetes. Following the end of the project, the project participants continue to meet on their own and have successfully started and maintained their own Diabetes Peer Support Group, which meets monthly.

Utilizing both a culturally sensitive and engaging approach, this project overcame the taboo among many Caribbean cultures against speaking freely on issues pertaining to diabetes and mental health. The lessons learned from the project can be used by organizations as they create and manage their own peer support programs for distinct populations. Moving forward, Live, Learn and Share is hoping to train residents from the Somali, South Asian (Urdu-speaking), Spanish, and Vietnamese communities to become Diabetes Peer Support Group facilitators, and translate the guide into these four languages.

More information can be found at http://www.bcchc.com

  >Close

MoPoTsyo began with an urban P.E.N of five Peer Educators in five urban slum areas, serving more than 500 people with diabetes, which is supervised by a Diabetic Program Manager. In June 2007, the first rural P.E.N. was started. There are now well over 1,700 people with diabetes served by MoPoTsyo, which includes three networks and more than 40 trained Peer Educators. Each trained peer educator is responsible for approximately 60 people with diabetes in the rural areas. In the urban slum areas, they are responsible for almost double that number because they have been working for longer. All peer educators report to their Diabetes Program Manager, who reports to a Provincial Program Manager in their province.

MoPoTsyo’s Peer Educators have diabetes and understand the challenges of living with the disease. They undergo training and must pass an exam in order to return to their villages and begin working. Peer Educators take an active approach to recruiting people with diabetes through a community-based intervention linked to select Service Providers. They reach out to people in their homes to find new patients and invite them to join the community of diabetes patients they have created.

  >Close

This project is based on the assumption that the PCMH model, peer support programs and community outreach activities all play major roles in engaging low-income minorities to improve self-management behaviors and achieve improved outcomes for their diabetes.  The design involves a closely evaluated demonstration project to assess the attainment of the following outcomes:

• Engagement in regular clinical care and self-management
• Improvement in self-management behaviors such as medication adherence, physical activity, healthy diet, non-smoking, etc.
• Improvement in clinical indicators such as HbA1c, blood pressure, BMI, etc., and
• Improvement in general and diabetes-specific quality of life

Additionally, we will select a research sample of 400 patients (from among the 4,000) for further study of intensive, ongoing peer support.

In this project, peer supporters will be part of the extended patient care team. They will work closely with patients and their families to encourage and facilitate access to regular clinical care, deliver diabetes education, assist patients with implementation of diabetes care plans, provide regular and ongoing follow up and support for diabetes management issues, and link patients to needed community resources. Program materials developed by the project team and Alivio staff can be found below and on our Spanish language/Recursos en Español webpage under the tab Proyecto con Alivio.

Model of organizational interactions detailing linkages between clinic and community resources

Sustainability is built into the very structure of the project through including organizations already committed to making PCMH and peer support central parts of their programs.  Implementation of the demonstration project will take place at Alivio Medical Center in Chicago, IL, a federally-qualified health center dedicated to providing quality, cost-effective health care to the Latino community. In addition, Peers for Progress, the National Council of La Raza and TransforMED will prepare a large number of relevant resources for nationwide dissemination through their vast channels of networks. A critical component to these dissemination activities is our National Peer Support Collaborative Learning Network.

You can visit our monthly news for updates on the progress of the project. Below are some documents relevant to the project:

Posters and Presentations

Diabetes Management through Peer Support and Community Outreach from the Patient-Centered Medical Home

Presentation delivered by Ed Fisher during the Panel on Patient Engagement and Practice Change at the Together on Diabetes Grantee Meeting in February 2013.

Diabetes Management through Peer Support and Community Outreach from the Patient-Centered Medical Home

Poster presented by Peers for Progress, NCLR, and Alivio Medical Center at the Together on Diabetes Grantee Meeting in February 2013.

ADA Health Disparities Poster

Poster presented at the American Diabetes Association’s 6^th Annual Disparities Forum integrating the implementation model we are demonstrating at Alivio Medical Center, the related national experience of NCLR affiliates, and the opportunities for such programs through the Affordable Care Act and related provisions.

The Promotores(as) Model and the Affordable Care Act

Presentation delivered at the 2013 NCLR Conference in a workshop entitled “The Promotores(as) Model and the Affordable Care Act: Promoting Health Education while Reducing Health Care Costs.” Peers for Progress presented with MHP and Alivio Medical Center. Read our blog about the conference.

Posters (English and Mandarin) presented in China at a workshop on developing peer support programs associated with the Chinese Diabetes Society and its Study Group on Diabetes Care and Education. The workshop was organized by Peers for Progress and colleagues at the Chinese Diabetes Society with 200 health care professionals interested in developing diabetes peer support programs.

BMSF Summit February 2012: Peers for Progress Presentation

News and Highlights

Announcement of grant award

Collaborative Learning at the 2013 Together on Diabetes Grantee Summit [Blog]

Growing to Love Program Monitoring – PfP Newsletter Spotlight of CES Contact Note and Program Monitoring Report

PfP Project Partner Spotlight February 2012: Alivio Medical Center

PfP Reflections on BMSF summit, June 2012

Program Resources

You can find resources in English and Spanish here.

For more information please contact Diana Urlaub, MPH, Program Manager at diana_urlaub@med.unc.edu >Close

The VA has officially trained and developed peer educational support meetings inside the VA Errera Community Care Center and evaluated these self-help meetings. These meetings are complementary to the care that was already being provided by the Community Care Center. The five Vet to Vet group meetings each week are: Recovery, Disability Awareness/Disability Pride, Writers Meetings, Mental Illness Anonymous, and Wellness. [Learn More] >Close