Community-Based Participatory Research Led to Patient Self-Help Programs

Ms. Wiesel

Building patient confidence is a key consideration. Ms. Wiesel said HSS staff are already seeing positive impacts on patients’ health outcomes and patient satisfaction. “Our research shows that patients involved with self-management with the right support and training feel empowered to take control of their condition. Now they don’t just show up for their appointments; they’re involved.”

Program development goals at HSS are to increase participant awareness and knowledge of self-management techniques, educate participants on coping strategies to use when managing symptoms and provide opportunities to practice learned skills. Ms. Wiesel said these goals are applied to all the programs HSS implements.

HSS self-management education programs consist of lectures, often with a doctor teaching a group from a podium, and workshops for small groups led by experts. Usually, there are monthly meetings, with more frequent support available via telephone. Voluntary exercise programs are typically offered once or twice a week to help with fitness and balance. Programs are also recorded and put in the library. Many of them become available online.

All goals must be measurable to validate effectiveness.

Program effectiveness and impact are constantly being evaluated through pre- and post-assessments, according to Ms. Wiesel. Assessment tools include participant phone interviews, debriefing sessions and the compilation of anecdotal statements.

“Everyone is excited at the beginning,” said Ms. Wiesel, “but one concern is how to sustain the program when people become bored since it’s no longer the newest shiny thing going on.”

One aspect HSS is always looking for is transferability. That’s how a group devoted to pain management in an orthopedic clinic morphed into a program for rheumatology patients.

Will This Work for Rheumatology?

HSS Education Institute staff wondered if patient groups in addition to orthopedic patients might benefit from a similar program. “The resounding answer was, ‘yes, rheumatology!’” said Ms. Wiesel.

The staff also realized rheumatology patients had different needs, such as for pain management, than orthopedic patients, and a new program would require key changes. Also, rheumatology patients need movement to loosen their joints. An expert in therapeutic yoga was hired to implement the rheumatology program.

The new rheumatology program was launched this past year, with the yoga instructor offering monthly classes in meditation and deep relaxation techniques to patients. She also teaches patients how to loosen their joints at home without hurting themselves.

So far the program has been effective. “Our surveys have found that patients are dealing with their pain much better, and they tell us they’re using what they’ve learned at home,” said Ms. Wiesel.

Here are some of the results from post-assessments and worksheets completed by participants:

• 79% said they have used mindful breathing techniques in place of medications;
• 97% reported the techniques they learned have helped them manage their pain;
• 100% reported using the techniques they learned to help them manage stress;
• 88% said they gained self-management skills;
• 95% said they gained knowledge about their disease;
• 96% reported they were satisfied with the program; and
• 95% would recommend the program to friends/family.

The rheumatology program has been so successful that HSS is exploring offering something similar to its post-operative, inpatient population.

Mike Fillon is a healthcare writer living in the Atlanta area.

References

1. Self-management support and education. Centers for Disease Control & Prevention, Division for Heart Disease and Stroke Prevention. 2017 Dec 21.
2. Why is self-management support important? Agency for Healthcare Research and Quality. 2016 Feb.
3. Community-Based Participatory Research Program (CBPR). National Institute on Minority Health and Health Disparities. 2018 Oct 2.
4. Van de Velde D, De Zutter F, Satink T, et al. Delineating the concept of self-management in chronic conditions: A concept analysis. BMJ Open. 2019 Jul 16;9(7):e027775.
5. Ahari SS, Habibzadeh S, Yousefi M, et al. Community based needs assessment in an urban area: A participatory action research project. BMC Public Health. 2012 Mar 7;12:161.
6. Community Needs Assessment. Centers for Disease Control and Prevention. 2013.
7. Israel BA, Eng E, Schulz AJ, Parker EA. (2005) Methods for Community-Based Participatory Research for Health. San Francisco: Jossey-Bass. 7–9.