Susanne Klawetter (top-left), Dora Raymaker (top-right), Christina Nicolaidis (bottom-left), and Roberta Hunte (bottom-right)
“When I’m providing clinical care, there is no lack of seeing problems,” said Professor Christina Nicolaidis, MD, MPH.
She finds that social and health services have overlapping issues that tangle up their effectiveness. When practicing medicine or social work as direct care, the complications of these systems become more obvious, especially for marginalized groups. Nicolaidis argues that whole systems may be completely infused with racism, ableism, heteronormativity, and other forms of prejudice.
To create changes in these systems that promote health equity, several of the School of Social Work’s faculty conduct community-based participatory research (CBPR). Many of them frame their scholarship as activism.
CBPR approaches allow scientific professionals to work together as equal partners with members of a specific community. Together they develop, implement, and disseminate research, aiming to make changes in the world desired by each community. Lived experience and academic learning comes together in CBPR, as equally powerful sources of knowledge.
“It’s a way we make change,” said Assistant Professor Susanne Klawetter, PhD, LCSW. “It’s not the only way, but it’s an important way. The more that we keep asking questions around a major issue, the more we reveal. In some ways the question is ‘what part of the puzzle are we trying to figure out today?’”
Through participatory research approaches, Klawetter, Nicolaidis, and other PSU faculty take action. “I want to use research as a wave that ultimately makes the world a better place,” said Nicolaidis. All of her research projects are collaborative and meant to create some form of change.
Science, Society, and Community
Research Associate Professor Dora Raymaker, MS, PhD, says CBPR changes the relationship between science, society, and community. They have put together a model, showing that the dynamics of traditional research have a weak connection between science and community, but a strong connection between science and society.
“The structural difference (in CBPR) is in strengthening that science/community linkage,” they said. “It’s not just data. It’s also access, expertise, lived experience, values, priorities, and research questions that are important. And then science feeds back into the community.”
Raymaker thinks one of the ways their research creates change is by adjusting what we privilege as legitimate information and legitimate knowledge. By centering community voices, scholarship changes the narrative.
“This is why I think that science and advocacy are absolutely linked,” Raymaker said about their most recent research into employment as a social determinant of health for autistic people. “I can find traction in creating larger systems change that the community wants.”
In that particular research, Raymaker is finding that the burden for fixing systemic problems often gets placed onto individuals, rather than organizations.
“How can we take that and put some of the burden onto workplaces and supervisors and these privileged, powerful systems that are in a much better position to handle the burden than somebody who was already being, in some cases, marginalized?”
Healthy Births
Klawetter agreed, saying “Research should be more of a voice at the table, shaping services and policy.” With a recent grant she received from the National Institutes of Health to study the mental health needs of parents in the neonatal intensive care unit (NICU), Klawetter hopes she’ll have just that kind of opportunity. She sees the NICU as a convergence of health, mental health, pediatric care, and adult care, where there’s a growing body of scholarship around how to affect policy and practice.
“I locate my work in thinking about how we better support parents' mental health,” she said, “especially in traumatic or really distressing circumstances.”
Together with Assistant Professor Roberta Hunte, MS, PhD, Klawetter published a 2021 article in Maternal and Child Health Journal on how racism-related stress impacts Black women’s health, pregnancy, and parenting. They studied how the Healthy Birth Initiative — an Afrocentric program in Portland, Oregon — can affect this relationship.
“Our work overlaps by thinking about how we deliver care for folks in a way that is accessible to them and is responsive to the needs they actually have,” Klawetter said, “Rather than making them fit into a model that’s most convenient for the healthcare system.”
Hunte said the Healthy Birth Initiative hasn’t been well written about in medical journal literature.
“This work needed to be lifted up,” she said, “The sum of the work is thinking more critically about working directly with impacted people, how they can be supported, how we can offer best-practices, and how we can shift the ways medical practitioners are thinking about the Black body.”
Throughout the process, Klawetter felt they kept having conversations about the questions: “What does it mean to make change?” and “What is the change Black women say is needed to improve their health outcomes?”
Autism in Adulthood
Nicolaidis and Raymaker are trying to answer the same question in their autism related work. Over the past decade they’ve worked together to focus on autistic adults and people with other developmental disabilities, using participatory approaches to partner with those communities to improve their health and health care.
When they first brought up the idea of doing research together with autistic adults, the response from other scholars wasn’t positive. “People acted like we had horns on our heads,” said Nicolaidis.
“The reviewers didn’t feel that autistic people had sufficient capacity for self-reflection to be able to participate in research,” said Raymaker. But their work has shown the opposite. They have since conducted multiple research projects in partnership with autistic people and have created a set of highly-respected guidelines for the inclusion of autistic people in research.
They both feel positive about the direction research scholarship is heading with the autistic community. “It’s really incredible how much that’s changed in 15 years,” said Nicolaidis. “It’s not just us now.”
Just the expectation that autism research should involve autistic people is significant.
“These are dialogues that never would have happened ten or even five years ago,” said Raymaker. “And now there are dozens of international groups that are doing this kind of work. I think we’ve done a really good job at changing narratives. ‘Autism acceptance’ as opposed to ‘awareness’ is gaining precedence.”
Nicolaidis and Raymaker are now co-directors of the Academic Autistic Spectrum Partnership in Research and Education (AASPIRE). Founded in 2006, the collaboration brings together the academic community and the autistic community to conduct research projects relevant to the needs of autistic adults on the autism spectrum.
One of AASPIRE’s accomplishments is the development of an interactive Healthcare Toolkit meant to improve the healthcare of autistic adults. They developed and tested the Toolkit through a series of research studies funded by the National Institute of Mental Health (NIMH).
The centerpiece of the AASPIRE Healthcare Toolkit is the Autism Healthcare Accommodations Tool, which allows patients or their supporters to create a personalized accommodations report for their healthcare providers. “It’s really important for a provider to have clear recommendations around how to work with a particular autistic patient, because it’s going to be different for each one,” said Nicolaidis. “Now that we have created and pilot-tested these tools, we are working with healthcare systems to try to figure out how they can effectively integrate them into their processes.”
They also have a five-year, $3 million grant from NIMH for the AASPIRE Outcomes Project. The goal is to create a set of patient-reported measures for the outcomes autistic adults feel are most important in their lives. Their hope is for these measures to become the standard of care when evaluating the effectiveness of services for autistic adults. They have used their participatory approach to choose 15 outcomes to measure and they have created or adapted survey instruments to be as accessible as possible to autistic people. Now they are about to test them in a large cohort of autistic people and see how they change over time.
“It’s not just interesting work,” Raymaker says of the research they and their colleagues do. “It’s work that really matters. The School of Social Work is addressing some of the most pressing and complex issues that we have in society.”
Raymaker also pointed out that major autism journals now have policies around respectful language and using community language and community terms. That shift in language changes how autism is talked about, prohibiting the dehumanizing language they saw previously.
About five years ago Nicolaidis became the Founding Editor-in-Chief of the peer-reviewed journal Autism in Adulthood (AIA), and Raymaker joined her as the journal’s Associate Editor. AIA aims to be the home for research and scholarship for the most pressing issues affecting autistic adults, from emerging adulthood to later in life. Now on its fourth volume, a third of the journal’s editorial board are autistic people. In addition to the traditional scientific peer review, submissions also get a review from an autistic person. Over 200 autistic adults volunteer to review manuscripts.
“Most authors don’t mean to be ableist,” said Nicolaidis. “I get emails regularly from authors who say ‘This was painful, but oh my gosh, I totally see things differently now. I’m embarrassed at how I was looking at it and now I’m approaching my patients and research differently.’”
Advances like this in academic writing are one of the many changes made by School of Social Work faculty who use CBPR to improve the effectiveness of social and health services.