Addressing self-injury among adolescents with intellectual and developmental disabilities (IDD) is typically quite different from the way it is addressed among those without IDD. A University of Minnesota graduate student is exploring the notion that, perhaps, it shouldn’t be.

Bringing together focus groups from across the mental health and disability fields, and across the world, Caroline Roberts (MNLEND 2020-21) is pursuing an interdisciplinary fellowship at the Masonic Institute for the Developing Brain’s TeleOutreach Center that bridges the fields of special education and adolescent psychiatry. The academic year-long project is helping inform her doctoral studies in educational psychology.

“The way we talk about and study and treat self-injury in people who do not have IDD is very different, and so I’m working on knowledge translation that I think could really benefit special education,” she said. “I’ve had incredible support on this from the self-injurious behavior (SIB) workgroup in the TeleOutreach Center and from my research team in the Department of Educational Psychology.”

The SIB workgroup creates interdisciplinary approaches drawn from the fields of disability, educational psychology, psychiatry, pediatrics, and rare disease.

“Caroline’s fellowship and emerging line of research cross over these disciplines using qualitative methodology, which is a novel approach,” said Jessica Simacek, director of the TeleOutreach Center.

It also brings an important voice and perspective to a complex problem, noted Adele Dimian, research associate with the TeleOutreach Center.

“We know that there are a lot of families struggling to find care and supports for SIB,” Dimian said. “Caroline’s work directly examines what providers are doing to address these issues and it is critical to facilitate our understanding of where the gaps are that are specific to SIB.”

Originally a little concerned that she might not be able to convince busy psychiatrists and behavioral therapists to participate in research, Roberts said professionals from both fields have been eager to join the virtual groups, which are specifically cultivated based on expertise and have already led to insights related to how self-injury is defined, studied, and treated.

“Everyone has been really excited to have these interdisciplinary conversations,” she said. She asks clinicians and researchers to discuss how they think about what is defined as self-injury and what treatments are appropriate. In the disability field, there is a tendency toward diagnostic overshadowing, or attributing all behaviors to a diagnosis of autism, for example, she said.

She hopes the facilitated discussions will inform her doctoral work, but they may also spur practical and research recommendations. She has already completed four focus groups and hopes to complete a half dozen more. She will perform a thematic analysis from the transcripts, and potentially publish the findings. She is recruiting early, mid-, and senior-level researchers and clinicians and has had both U.S. and non-U.S. participants.

“I’m getting the sense there is an urgency to this,” she said. “There are a lot of people who need help now, so I’m thinking about what I can get to clinicians who are actively supporting people, particularly people with IDD who have less available support.”

The work also holds personal urgency for Roberts, who has a brother with IDD who has struggled with SIB since early childhood.

“It is very much an ongoing journey for my family,” she said. “One of the ways I’ve learned to cope with it is doing work I find meaningful, which is exactly what this is. Being able to take my lived experiences and make something of it that feels like it has the potential to help others is really the best way I know how to cope.”