The Evidence Base for Peer Education Relying on the "Lived Experience"

The Parent to Parent Experience
Designed to help parents of children with attention-deficit/hyperactivity disorder, CHADD’s Parent to Parent: Family Training on AD/HD enrolled its 1,000th participant this month. As of today, there are 1,167 parents participating in the program. The P2P program exemplifies one of CHADD’s core principles—peers helping peers—in this case, parents helping other parents.

A second core principle of CHADD, since our founding 20 years ago, is reliance on peer-reviewed evidence-based science. Recent published research on a sister program that P2P is based on documents the evidence.

Parent to Parent is a unique educational program for parents and individuals who are dealing with AD/HD; many participants, or their family members, have recently received a diagnosis of AD/HD and are searching for reliable, evidence-based information on the disorder. Courses are offered in 38 states and online by certified Parent to Parent teachers who have received training through CHADD.

The course, a series of two-hour classes offered during the span of seven weeks, includes a variety of topics on which parents are searching for information. The course includes an overview of AD/HD and available assessment and treatment options. Also included is information on managing the impact of AD/HD on a family, behavioral interventions that work and effective parenting strategies. School issues, such as special education and IDEA, classroom accommodations and Section 504, and how to work with school administrators are incorporated. Also discussed are issues surrounding growing older, the disorder’s impact in the teenage years and during adulthood.

P2P is an exemplary model of the role that voluntary health agencies perform in American society. Last year, the National Alliance on Mental Illness announced, after more seven years, the training of their 100,000th family in their Family-to-Family Education Program (FtF). This peer program is focused on families dealing with the recent onset of severe mental illness. Parent to Parent was the first program funded by contributions to CHADD’s President’s Council—donors who give substantial personal financial contributions to support specific CHADD educational projects that might not otherwise be possible. The P2P concept was based on NAMI’s FtF initiative and voluntarily initiated as an AD/HD program by Linda Smith of CHADD-Utah. Meanwhile, Beth Kaplanek of New York and Mary Durheim of Texas worked on similar projects. They soon collaborated and, during a period of two years, created Parent to Parent.

Linda is a former member of the CHADD national board of directors, and Beth and Mary are former CHADD national presidents. Three innovative volunteers, collaborating under the umbrella of a voluntary health organization, with financial support from other volunteers, typify the role of voluntarism in America. And these three individuals serve as a model of how to answer the question,“What’s after my national board service?”

The Evidence Base
In the winter 2007 issue of the NAMI Advocate, researchers at the University of Maryland, with financial support from the U.S. National Institute of Mental Health (NIMH), documented three research-based evaluations of the FtF program. Their findings included:

1. People completing FtF indicated less “subjective burden” after completing the program. This is a NIMH-university funded study, so the language and phrasing will be challenging. “Subjective burden” is “how much emotional stress family members rate themselves as feeling, as a result of objective stresses and other worries.”
2. People completing FtF indicated more “empowerment.” Empowerment is a term that has been used in the mental health field for the past 20 years and has been increasingly recognized by researchers and policy makers. Empowerment is one’s sense of having information, rights and skills needed to understand a given situation and to meet one’s goals within this situation. The FtF researchers asked families about their sense of empowerment in their family, in their community, and with the mental health system. People completing FtF were much more able to adapt to the situations facing them.
3. People completing FtF experienced more “proximal” positive changes (such as better family communications and less anger).
4. People completing FtF experienced more “distal” benefits (such as less stress and less conflict in the family).
5. People early in their FtF program participation felt immediately welcomed, heard that others face the same problems they do, and received valuable information from their very first meeting. These benefits led them to return to ensuing meetings. The researchers term these benefits “early sustenance.”

The Future of Parent to Parent
There are now 181 Parent to Parent teachers working with local chapters to offer the course and more than 1,045 graduates of the course. The course is also offered in Spanish across the country. In addition to information, parents and individuals learn tactics and tips for managing the disorder in their children’s and their own lives, have the opportunity to meet other people dealing with the same situations they deal with, and discuss their concerns in a supportive environment. Parents who have taken the course say they have gained a better understanding of the disorder, improved their parenting styles, and gained confidence in navigating the challenges AD/HD can present.

Over the next few years, CHADD will also be seeking independent third-party academic evaluation of the program. This is actually what is known as a “paradigm” change. Many academics and treating professionals still reject the validity of peer-provided education and support. CHADD will support NAMI and others in developing a body of evidence documenting the benefits of peer-provided education and support, using the “lived experience” as the benchmark.

To register for a course, contact Parent to Parent at CHADD; visit our website or call (301) 306-7070, extension 135.