Working with vulnerable research subjects - by Deborah Mattila

Our current evaluation of Performing Arts Workshop's Artists-in-Schools program involves researching how the effects of the program differ for students in general and special education. A concern of ours is how to conduct our research in a way that identifies and accommodates the needs of students in special education without adding to the stigma of being in special education. According to the National Institute of Health, research involving children demands a particularly high level of care and consideration by investigators since they are not considered able to make informed choices independently, therefore exposure of children to more than minimal risks must be weighed carefully. Although we have conducted research and evaluation projects with children before, we wanted to be exceptionally careful working with students in special education, since they are even more vulnerable as research subjects. One of our particular concerns was that students in special education would be stigmatized in the classroom by completing surveys that were adapted to their needs or by having an adult assist them with their surveys. However, education specialists in the San Francisco Unified School District informed us that students in special education are already stigmatized in the classroom by having additional help and so our surveys would not significantly stigmatize them further. We have adapted our research methods for this project to minimize the risks to all student research subjects, but particularly those in special education: •The student survey was adapted to gather appropriate information from students in general and special education on the same form. •There is no text on any surveys completed by students or teachers that indicates our research is specifically about special education – this not only minimizes stigmatization risks for students, but also ensures that teachers are not actively comparing their general and special education students on their surveys. •Classroom teachers go over the entire student survey as their classes complete it; special education students receive additional help at this time as needed. •Teachers and parents do not identify their students as being in special education; instead the Improve Group tracks status by collecting behavior and education goals from students’ Individualized Education Plans.