One of the powerful concepts to emerge in healthcare over the past decade is health confidence. Health confidence is the confidence that you can control and manage most of your health problems, according to Dartmouth College health policy professor John Wasson. People with high health confidence are significantly less likely to be hospitalized long-term, fear their medication or feel like they were harmed by their disease versus similar people with low confidence.
How can this confidence be taught? The team at Oregon Health & Science University (OHSU) has some ideas. They have launched a seven-week course that teaches people with Parkinson's disease (PD) how they can take charge of their Parkinson's. The OHSU Parkinson Center, a Parkinson's Foundation Center of Excellence, and Parkinson's Resources of Oregon (PRO) joined to offer the Portland Parkinson's community a new kind of class: "Strive to Thrive."
While teaching self-management skills and knowledge for living with a chronic illness, the class also utilizes the synergy of learning within a group of people who are managing Parkinson's together. "The power to change things can be further facilitated through a group," said Julie Carter, RN, MS, ANP, who sees patients at the OHSU Parkinson Center. "A group holds you to your goals."
"Strive to Thrive" follows Stanford University's Chronic Disease Self-Management Program (CDSMP), which focuses on teaching goal setting, action plans, decision making, problem solving, brainstorming and how to apply all of them.
Each two-and-a-half-hour class is led by two specially-trained instructors, one or both of whom have Parkinson's. Each week they cover a unit, such as exercise, nutrition, medication, action plans, relaxation and many more. Each unit is built on the concept that the best way to live with a chronic illness is to be in control of it.
"Strive to Thrive" teaches participants that they cannot manage their disease alone, but should instead become an active manager; taking responsibility for gathering information about their symptoms to work with their health team, learning how to set goals to address the things they want to change and how to take responsibility for following through and evaluating success. This requires knowledge and specific skills — all taught in the class.
"This course would be a great benefit for anyone living with a chronic illness, whether as a caregiver or the person living with the disease because it is a terrific reminder of the importance of having a purpose of action in all we do," wrote an anonymous participant in a letter to Julie.
Julie has expanded the program to include a seventh, Parkinson's-focused week. Throughout the sessions, all self-managing questions that relate to PD are logged in a "parking lot," or a question bank. In the seventh week, Julie, who specializes in Parkinson's and movement disorders, answers the Parkinson's questions and helps participants set and adjust their goals.
OHSU is also analyzing the program's effectiveness. Specializing in PD care and research, the OHSU Center of Excellence team is conducting an observational pilot study evaluating the class.
In its first year, the program was offered to people throughout all stages of PD. In 2017, the study will focus on enrolling participants who have been living with Parkinson's between one and five years, as well as couples. "We believe that there is even more power in doing this program together, as a couple," center coordinator Lisa Mann, RN, BSN,MA, said.
Research in other chronic illnesses has shown that couples cope best and experience more positive outcomes when they think of an illness as "our illness" rather than "my illness." This couples research has never been conducted specifically in Parkinson's, until now.
"We are interested in what would happen if couples took this workshop together," Julie said. "Engaging Parkinson's couples in 'Strive to Thrive' may be an innovative and compelling way to increase benefits of such programs for PD patients, their spouses and the patient-spouse relationship. The proposed study will explore these benefits."
This year, each "Strive to Thrive" attendee will also be enrolled as a participant in the center's clinical study.
Response to this workshop was extremely positive and the three workshops offered in 2017 were filled within a few weeks. There is currently a waiting list and plans are being made to expand offerings after more instructors are trained. The program's only cost to participants is a $25 course materials fee. There is a need and desire for "Strive to Thrive" because it improves the confidence to take charge of one's health.
"A special thank you to our program leaders, Julie Carter and Nancy Nelson, for giving us the opportunity to participate in this workshop and for making it fun and informative at the same time," wrote a participant. "I plan to discuss the workshop with my neurologist at my next appointment and suggest to her that she recommend 'Strive to Thrive' to her Parkinson's patients."
Strive to Thrive tips for how to better self-manage by Julie, RN, MS, ANP, from the Oregon Health & Science University Parkinson Center:
- Change requires self-awareness. To change a health behavior, begin by tracking and evaluating your current patterns and triggers.
- Set achievable goals. Make a specific goal. Write out your steps to achieve it along with when, where, how often and how long you will work to achieve it.
- Change can require thinking outside the box. Brainstorm as many ideas as you can that will help you accomplish your goal, without judgement. Try the ones that are realistic for you.
- If you don't meet your goal, focus on actively evaluating your barriers. Either change the goal or alter your plan so you can accomplish it.
- Changing something in your life requires decision making. Systematically list the pros and cons of why you want to do something.
- Remember there is not just one cause for every symptom. Which ones can you change? For example, fatigue. While it can be caused by PD, try to set goals that can help you improve your exercise or nutrition routines.
- Others can help you accomplish your goal. Rely on friends and family for support, encouragement and to hold you accountable.