SLIPPERY ROCK, Pa. - Four Slippery Rock University students are getting hands-on therapeutic recreation research skills while working with two members of the University parks and recreation faculty on an comparative effectiveness study examining ways to aid adolescents with autism.
The research project is titled "Comparative Effectiveness of Recreational Therapy and Activity-Based Programs as Non-Pharmacological Interventions of Adolescents with Autism." The work is funded by a $4,000 grant from the University's joint Faculty/Student Research Grants Program.
Deborah Hutchins, assistant professor, and Elizabeth Kemeny, instructor, both in the parks and recreation department, are leading student researchers, Hollie Compton from Leechburg, Samantha Lengfelder from Monroeville, Shannon Russell from Shippensburg, and Rachel Kerr, from Harmony. All of the students are therapeutic recreation majors.
"In the U.S. alone this year, approximately 50,000 adolescents with Autism Spectrum Disorder turned 18 years old," Kemeny said. "According to a national study, over half of the families of adolescents with autism report the lack of effective or consistent interventions specifically designed for lifelong independence and wellness."
"Most individuals with autism require intervention throughout adolescence into adulthood with a yearly cost of $3.2 million per capita. No clarity exists on the comparative effectiveness of individualized goal-directed recreational therapy and a generalized approach," Hutchins said. "This research project's purpose concerns the following research question: What type of intervention is the most effective in improving the social skills, self-efficacy and quality of life of an adolescent with autism?"
"This is just another method to be able to evaluate a type of intervention because you are comparing it to another type of program that does not use the same program approach," Hutchins said.
"Using a comparative effectiveness model, this study will compare a recreational therapy individualized goal-directed intervention to a general activity program for adolescents with autism" she said.
The project was approved in late January and is now well under way, Kemeny said.
"The researchers are making use of two existing programs and when sufficient data is collected will offer a comparison of the two types of programs and which proves most beneficial," she said.
The research includes obtaining the consent and/or assent of program participants and parents. The participants and parents agree to complete pre- and post-tests, including a social skills questionnaire. The participants also agree to be formally observed by the students using a standardized tool recording results with smart-tablet technology.
"The TRAILS - Therapeutic Recreation: Accessing Independent Leisure and Social Skills - program offered at the Alcoa Transition Trail at SRU's Storm Harbor Equestrian Center works with adolescents ages 13-21with autism, and their parents, including designing specific therapies, interventions and programs with specific goals to help the individuals increase engagement and social skills," Kemeny said.
The researchers are also monitoring, with client and parent approval, those participating in the Parents in Toto program based in Zelienople. "Toto is a Latin word meaning 'in total, completely, totally and altogether,'" Hutchins said. "The program at the Toto Autism Research Center is designed to create a comfortable, welcoming environment where parents, diagnosed individuals, families and friends can gather socially, educationally and spiritually without judgment or prejudice. There are no specific interventions prescribed for the individual, but there may be some over-arching goals, such as encouraging participation in games or other activities, or to socialize with peers, but there is not the same 'structure' as the TRAILS program," she said.
"The major difference between the two programs is that one is structured to provide individual assessment and then set and hopefully reach engagement goals, while the other allows more free-flowing activities or is just getting them together for 'recreation.' Both programs are comprised of similar participant samples. The Toto program is not based on doing an assessment. Our research is to try to determine which type of program provides the best outcome for the individual," she said.
The Toto program, which opened in 2008, is certified as a nationally recognized non-profit. It is partly funded by donations from civic groups, private individuals and businesses; family and agency memberships; and, corporate foundations and sponsorships to avoid billing or charging for services. The program's mission is to provide a supportive environment for the exchange of ideas, information and hope.
Kerr said she joined the work after "Dr. Kemeny asked if I would be interested in doing a research project. I felt it would be a wonderful opportunity to contribute and learn. I also had the chance to work with participants who had autism through TRAILS. I had a really great experience with those involved, and it taught me so much. This research project is a really great learning experience."
"In therapeutic recreation, I think it helps to have that one-on-one experience with people who have disabilities, but more importantly it helps even more if we know a way that we can reach out to them more effectively. So, with this research our hope is to find what interventions and social experiences improve these participants' interactions with their peers and their overall quality of life. If it is possible to find a method or intervention that improves some of these barriers, I think that would be great," Kerr said.
Adding to the learning process, Kerr said the work "has already taught me how to efficiently collect data with an iPad, which is really cool."
The student researchers use an iPad application developed by the University of Virginia that allows them to quickly report and tally their pre-set list of observations.
"Each student is assigned to observe a particular participant, recording their interactions with others, willingness to join in an activity, ability to stay on task, verbal interaction with others along with other similar activities as part data-gathering portion of the research. These are all social-building skills you need," Kemeny said.
The student researchers will be taught to analyze the data as part of the student-faculty collaboration.
Compton, joined the project in part because she had previously work with TRAILS, "so I had a little background on the research. Dr. Kemeny asked me if I would like to help. I was definitely excited to try something new. I've never helped with any sort of research, and I figured it would be a learning experience."
"I think this project has the potential to determine what activities are most beneficial for these specific participants now and in the future," she said. "This research project can help me academically because I get to see the interventions being used for individuals with disabilities in a different aspect. Actually being able to observe numerous people and watch as the program progresses really helps me gain a better insight on how these interventions impact the individuals."
"I became interested in the project because research is a viable part of recreation therapy. Therefore, I wanted to learn how to collect data and analyze it to show the effectiveness of such therapies," said Russell. "I think working on a research project will help me gain valuable knowledge and skills about research that will help me acquire jobs in the future."
The project involves some 20 volunteers through TRAILS and 10 at Toto. "It is a very intense observation program," Hutchins said.
Kemeny said she got interested in the project because there was a lot of need. "There is a lot of research about younger children with autism, but very little done with adolescents with autism. Basically you do research because there is a gap in the knowledge area."
She also works with the Autism Speak project, which has lent support.
" I think that it gives me insight on possible ways to use interventions in my future career and what activities are most beneficial for people. Even through these first couple of weeks of observation I have already been able to pick up on behaviors and communication that many of the students use, which is helpful for me since I'm a very much a visual and tactile learner," Kerr said.
"I think this project has the potential to determine what activities are most beneficial for these specific participants now and in the future. My hope is that this project will help determine an intervention that is most effective so that adolescents with autism can grow and develop their social skills, find leisure activities they enjoy and improve their overall aspect of life. I know that may seem like a big goal, but that is the ultimate purpose of the research, which I hope we can all help to carry out," she said.
Kemeny said her own interest in research grew from a professor during her undergraduate years at Wake Forest University "where a professor took me under his wing and really helped me developed a passion for research. I want to pass that on."
Hutchins said she too was involved as a student researcher and got to present a paper nationally with a student and "that was a real learning experience for the student. In higher education, to get students involved in research is really important as a way of getting students engaged in learning, especially at the undergraduate level."
Both faculty said that they were pleased the student researchers were sophomores because it will help to build research into their student learning. "They will be able to follow the full process, then either attend a conference to present their work in their junior or senior year," Hutchins said.
"One of the other things we really focused on was making sure that our students were learning something," Kemeny said. "We are really breaking down the process for them so they are not just doing the data entry; they are part of the process from day one so they get the full experience and process."
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