Many people are handed a diagnosis with very little guidance on what to do next. But the diagnosis is life changing. Facing life with a chronic progressive disease means facing changes to health, relationships, family life, employment and finances.
Research tells us that when people are given the resources to cope with these changes, they are empowered to take an active role in managing PD, leading to better health and quality of life.
PD Self-Efficacy Learning Forum (PD SELF) is an innovative disease management program that offers this approach. It was developed in 2013 by Diane Cook as part of a A research study in humans that aims to test a new intervention – this could be a drug, surgery or therapy like exercise or diet guidelines – to make sure it is effective and safe. sponsored by the Colorado Neurological Institute.
Based on the psychosocial theory of self-efficacy — your belief in your personal ability to adopt a recommended health behavior — PD SELF helps people newly diagnosed with PD to create a personalized approach to managing their disease. Self-efficacy is the confidence a person has in his or her ability to influence an outcome or be successful in achieving a result. Self-efficacy beliefs determine how people think, feel and motivate themselves. It is increasingly used in health care for its effectiveness in helping people to adopt healthier behaviors.
A central focus of PD SELF is to help people strengthen self-efficacy beliefs, thereby positively influencing the management of their disease. At the end of the first clinical trial testing this approach, researchers found that PD SELF:
- Improved mental health and well-being of people with PD and their care partners.
- Decreased participants’ stress, A feeling of nervousness, worried thoughts and physical distress. and depression and improved sleep.
- Improved participants’ emotional well-being, even when PD (or general health) declined.
- Led to long-term improvement in the areas above, with changes observed for as long as one year after the clinical trial ended.
- Led participants to become more active in the Parkinson’s community, for example through increased enrollment in clinical trials.
Given its positive results, the Parkinson's Foundation is seeking teams of community leaders to help us share the benefits of this program throughout the Parkinson’s disease community.