A study funded by the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR).
People with intellectual or developmental disabilities (IDD) have lifelong disabilities originating before the age of 18 and may result from known causes, such as autism or cerebral palsy, or from unknown causes. They often require supports and services to live and work in their communities. Adults with IDD may attend day or residential programs through community-based organizations (CBOs) to assist them with employment, activities of daily living, socialization, or leisure.
Past studies have found that many adults with IDD, like other adults in the general population, do not exercise regularly and may engage in unhealthy habits such as drinking a lot of soda or coffee. Community-based health and wellness programs can teach people to improve their physical activity and nutrition, but adults with IDD are often excluded from those programs and therefore may not have access to information about or support to engage in healthy behaviors. It may be helpful for CBOs to establish programs that teach about nutrition and physical activity in a way that adults with IDD can understand and feel supported to improve their health.
Past studies have found that wellness programs may be particularly effective when run by peers who have similar life experiences to the program participants. Peer-led physical activity and nutrition programs may be more appealing for people with IDD and may offer the kind of encouragement and support they need to learn health-related information and improve their health behaviors. In a recent NIDILRR-funded study, researchers tested a wellness program run by peer health coaches with IDD in collaboration with staff mentors from CBOs. The program included training of the peer health coaches and mentors and then utilizing the peer health coach-mentor pairs, to run the HealthMessages program for adults with IDD. The researchers wanted to find out how well the training program would work and whether the peer-run HealthMessages program would lead to increased physical activity and water consumption for the program participants.
Researchers at the Rehabilitation Research and Training Center on Developmental Disabilities and Health enrolled 33 peer health coaches, 35 staff mentors, and 311 program participants with IDD in a study to test the Peer-to-Peer HealthMessages Program. The peer health coaches were adults with IDD who received services from local CBOs and who wished to become volunteer peer health coaches. The mentors were staff working at CBOs serving the peer health coaches and other adults with IDD. The program participants were adults with IDD from the same CBOs as the peer health coaches.
The program included two phases. The first phase is a train-the-trainers program to teach adults with IDD to become peer health coaches, who would then work in collaboration with staff mentors from the CBOs in the second phase. The second phase is a HealthMessages program for adults with IDD led by the peer health coaches and mentors. The HealthMessages program focused on teaching program participants to increase their weekly physical activity and to drink more water each day.
During the first phase of the study, the peer health coaches and mentors participated in a 75-minute webinar which demonstrated how to implement the HealthMessages program. Each peer health coach was paired with a staff mentor who supported them in learning the program content and developing their leadership skills to deliver the program. The peer health coach-mentor pairs also received a coaching manual and materials to distribute to the program participants during the HealthMessages program.
During the second phase of the study, each peer health coach-mentor pair led 12 weekly sessions for a group of up to 10 program participants with IDD. Each weekly session consisted of discussion on a specific health message. The sessions covered the areas of “making healthy choices,” “changing lifestyles,” and “keeping healthy lifestyles.” The two main topics discussed were ways to increase exercise and physical activity, and the importance of drinking more water and eating fruits and vegetables that are high in water content to stay hydrated. In addition to the weekly classes, the program participants were given booklets and wristbands displaying the weekly health messages. Each program participants received two wristbands each week: one to keep, and one to “pass on the message” to another person like a friend or a family member.
The researchers used questionnaires to measure the results of the webinar training for the peer health coaches and mentors and the 12-week peer-run HealthMessages program. To measure the results of the webinar training, the peer health coaches and mentors answered questions before and after the webinar regarding how confident they felt in their ability to teach health messages to other adults with IDD. The peer health coaches also answered 13 questions before and after the webinar to assess their knowledge about physical activity and proper hydration. Then, the peer health coaches and mentors answered open-ended questions to share their thoughts on the webinar.
To measure the results of the health messages program, the program participants completed questionnaires before and after the program. The questionnaires included the same 13 questions the PCHs answered in the first phase, assessing their knowledge about physical activity and proper hydration. In addition, the program participants indicated how much social support they felt they had with physical activity. Then, the program participants reported how frequently they exercised and engaged in physical activity during the last week and how much water, soda, and coffee they consumed each day. These questions were combined into a “total health behaviors” score. Finally, the program participants were invited to give open-ended feedback on the health messages program.
The researchers found that the peer health coaches showed increases in their knowledge about physical activity and proper hydration after viewing the webinar. The mentors also reported increased confidence in their ability to teach HealthMessages. The peer health coaches and mentors rated the webinar positively overall. Almost all (93%) of the peer health coaches said that they would recommend the webinar to others who want to become peer health coaches, and 85% said that they would serve again as a peer health coach. Some of the peer health coaches and mentors suggested format improvements to the webinar such as breaking the webinar into shorter sessions.
The researchers found that the HealthMessages program had led to several positive results for the program participants with IDD. Specifically, the program participants increased their physical activity knowledge by 11% and their hydration knowledge by 26%. They also reported a 39% increase in their social support for engaging in exercise and physical activity, and an 11% improvement in their total health behaviors. In general, the program participants reported drinking more water daily and getting more exercise and physical activity each week at the end of the program than at the beginning.
When asked about their impressions of the HealthMessages program, the program participants rated it positively overall. Eighty percent of the program participants said that they would do the program again, and 54% said that they would like to become peer health coaches. The program participants suggested additional health topics that could be helpful in expanding the program such as nutrition, weight loss, and sleep, as well as exercise tips for wheelchair users.
The authors noted that although the HealthMessages program helped the program participants with IDD to increase their water intake, it did not lead to decreases in soda or coffee intake. It may be useful to explore additional health messages that more directly target consumption of unhealthy foods and beverages. Future research may also be useful to develop wellness programs for individuals with IDD who do not read and write, as this program relied on written materials to convey the content.
The authors noted that trained peer health coaches may be especially adept at delivering health messages to program participants with IDD. Individuals with IDD may be more receptive to health messages coming from their peers than from staff or health professionals. Peer health coaches may also receive benefits, including increased health knowledge and leadership skills. CBOs serving adults with IDD may consider implementing similar programs, as well as providing more opportunities for individuals with IDD to become wellness coaches in their communities.
To Learn More
The HealthMessages Program, including the HealthMessages Program Kit and the webinar, is available for purchase through the HealthMatters Program website.
Previous issues of Research In Focus covered access to recreation and fitness facilities, peer coaching, and health promotion for people with disabilities. Explore the Research In Focus series.
To Learn More About this Study
Marks, B., Sisirak, J., Magallanes, R., Krok, K., and Donohue-Chase, D. (2019) Effectiveness of a HealthMessages peer-to-peer program for people with intellectual and developmental disabilities. Intellectual and Developmental Disabilities, 57(3), 242-258. This article is available from the NARIC collection under Accession Number J81256.