The Evolution of Research: Serving Rural Kentucky Adolescents
By Ashley Opp Hofmann
Photo at right: Students reach for tools as they learn to perform basic car maintenance as part of occupation-based programming.
When Doris Pierce, PhD, OTR/L, FAOTA, took the Endowed Chair in Occupational Therapy at Eastern Kentucky University (EKU) in 2000, she knew she needed to select a distinct population to work with that her department’s work could benefit over the course of many years. Her choice? Rural Appalachian adolescents in alternative education settings. Her reason? “Adolescents with mental health issues in rural settings are particularly complex to serve because their lives are changing rapidly and they are served by multiple underfunded systems that coordinate poorly, in which mental health needs are not a priority,” she says.
Four main systems in rural Kentucky—education, health care, social services, and juvenile justice—have serious shortcomings, in addition to lack of coordination. The educational system tends to provide occupational therapy only until students become adolescents. The health care system lacks mental health parity and students don’t receive the same degree of services they would if their disabilities were physical rather than mental. The social services system struggles because providers are widespread with heavy caseloads. And many adolescents wind up in the juvenile justice system, which is punitive rather than rehabilitative. “Those four systems usually aren’t speaking to each other and provide different types of care and services in a fairly limited way, especially in [Appalachian] rural areas,” Pierce says.
Over the past 4 years, Pierce and other researchers and fieldwork students have developed a series of initiatives and studies aimed at developing occupational therapy services for rural adolescents in nontraditional educational settings, such as alternative schools, juvenile detention centers, and residential mental health facilities. All of this has taken place against the backdrop of Appalachia’s geography, rich culture, economic conditions, and sense of community.
Developing Occupational Therapy Services for Adolescents
From 2003 to 2006, an occupational therapy team used action research to develop programming in alternative schools and juvenile justice facilities. The programming was designed to be occupation based, provided within peer groups, student centered, and cost effective.
Twice per week for 1 hour, therapists met with each naturally occurring group (such as in a classroom). Depending on the school, activities took place during the school day and after school. Programming focused on developing life skills, such as budgeting, grooming, cooking, and repairing automobiles; exploring healthy leisure (essentially having fun with one’s peers without getting in trouble); and exploring prevocational activities, such as learning how to fill out job applications, behave at work, and find out about types of work one might find interesting. The latter program proved immensely popular. “In one of the [all male] juvenile justice settings, a construction worker came and they built a doghouse for a dog adoption program,” recalls Pierce. “They greatly enjoyed using the tools, and the man was a good model because he was only a few years older and had also had a challenging high school period.”
The students, researchers found, were even more complex than anticipated. “A lot of these kids should have been identified with learning, behavioral, or mental health issues as early as kindergarten,” Pierce says, but lack of occupational therapy staffing caused them to grow up without proper services. “These are poor, rural schools,” reminds Pierce, “so we had to offer something that was a beginning step for occupational therapy that would be appealing to [school] administrators—without asking them to go too far from what their resources really are.” In the 2006 to 2007 year, three schools paid $7,000 for a full year of twice-per-week programming for three to four different groups.
The PRISYM Project
In 2004, Pierce was awarded a $1 million, 3-year grant titled Providing Rural Interdisciplinary Services for Youth with Mental Health Needs (PRISYM) to train occupational therapy, psychology, and social work students to provide culturally sensitive services to Appalachian youth with mental health needs. “In PRISYM, we learned a lot about how to work in service systems beyond the schools,” Pierce says. Expanding into interdisciplinary training helped the occupational therapy team members broaden their perspective on the mental health needs of Appalachian youth, build relationships within Kentucky systems, and benefit from the perspectives of other professions on offering services within these overburdened state systems.
The Transitions Study
In 2007, the state budget prevented administrators from using the developed occupational therapy programming, but the occupational therapy team had already refocused on researching a key issue for adolescents in nontraditional educational settings. Working with the Kentucky Educational Collaborative for State Agency Children, the oversight agency for all 105 nontraditional education settings in the state, the team is studying transitions. “Kids are moving around among all these systems and settings. They perhaps have an exacerbation in their bipolar disorder, get moved to a residential mental health facility, go back to their alternative schools, get caught smoking pot in the bathroom, and end up back in the juvenile justice system,” Pierce says, “and these systems aren’t communicating very well. Transition is a complicated issue and we are beginning to describe its many factors—what different settings are doing well, and what is causing some of the biggest problems across them all.”
The study includes, among others, adjudicated youth; students in day treatment; students with developmental disabilities; pregnant teens; and adolescents without a diagnosis but who are wards of the state due to family conditions of abuse, neglect, or parental confinement in jail. “It is a mixed-methods descriptive study of perceived patterns, successes, and barriers in the transition of youth into and out of these nontraditional academic settings, from the perspectives of the youth as well as the administrators,” Pierce says. The team will examine incoming assessment, tracking, relationships with prior schools, and outgoing planning (e.g., work, college, and the schools students came from). Pierce estimates that about half of adolescents in juvenile justice settings have disabilities, most of them unidentified.
“State agencies seem excited by our findings thus far,” says Pierce. Her team regularly shares its unfolding study in meetings with Kentucky education and juvenile justice administrators, and with the state’s task force, the Kentucky Interagency Transition Council. “For next year, we are planning to move beyond description, to collaborate with high-performing nontraditional educational settings in developing transition programs. Life skills programs, such as what we developed in our earlier work, will be an important part of that and will help to create a role for occupational therapy with youth at risk.”
Evidence or Innovation?
“People ask me if we have evidence for our programming. That’s an interesting point,” Pierce says. “Our first plan was to do an outcomes study, but then we got into these settings and realized we needed to develop programming first. You can’t just walk in and do innovative practice in new areas for occupational therapy with evidence in hand; it’s not possible. Until you develop a program that really works, there’s not much point in doing an outcomes study,” says Pierce.
“We do formative assessments with students and teachers and get feedback from them. It’s not the gold standard of a randomized clinical trial, but we’re continually asking the students to help us improve the program and we collect a lot of data from them. What’s working? What’s not? There’s a cycle of feedback and change, and we’ve evolved this program over 4 years, entirely by feedback. What we have now is programming that works.”
Ashley Opp Hofmann is AOTA’s senior staff writer.