As the mother of a child with autism, Wendy Besmann saw patterns of interaction between families and treatment providers that impeded the flow of service delivery. She developed a systemic view of this process and condensed it into a 100-page workbook full of practical charts, checklists, and strategies for parents.
“Specialists are not always good at explaining complicated matters in simple terms,” she observes in a section called “Skip the Drama! How to Listen to Test Scores” from Family Road Map. Besmann offers six handy ways to politely but firmly say to a provider, “Please explain this data more clearly so I can understand your recommendations.” The underlying power/authority message: Take control of the conversation, build credibility as a knowledge player, and form a mutually-advantageous working partnership with the power gatekeeper.” An interactive “Family Road Map/Hoja de Ruta de la familia curriculum based on the book is now taught from Maine to Hawaii by parent paraprofessionals who participate in the Team Up for Families/Family Road Map Certified Trainer and Facilitator collaborative.
Family Road Map/Hoja de Ruta de la familia workshops incorporate games and tools that range from play parachutes to scrapbooking materials in order to help parents experience effective interactions. Since providers typically shape the dynamics that families encounter, TUFF is now developing a Family Road Map curriculum that will use many of the same playful techniques to teach provider staff such as medical students and case workers a systemic view of power transactions in family/provider relationships. This holds positive implications for patient-centered care.
Besmann’s next challenge is to enhance Family Road Map’s systemic approach by gathering hard data that will keep the curriculum reliable and relevant across multiple contexts. The view that informed Besmann’s earlier designs was rooted in her own experience, and gradually broadened through the experiences of parent trainers who implemented and refined the curriculum. However, this ever-widening anecdotal process indicates that an Asian-American immigrant family in urban Honolulu and a Latino family in rural Arkansas may need different tools for navigating their environments. Besmann and her colleagues hope to work with data specialists who can train and assist parent paraprofessionals in identifying relevant public information and organizing it into data sets that tell real stories about local needs.
Besmann would use these data to test and refine curricula according to location and context. The approach is analogous to “personalized medicine,” in which an individual patient’s health data can be used to design ever more precise treatments for his or her medical needs. “Navigating systems is a local process,” Besmann says. “We need to give people the right language and the right tools that really work for their families and their unique needs. We need to give providers the right tools to help make that transaction flow as smoothly as possible. That’s patient-centered care.”
(Above: Wendy Besmann with her son, David.)