Ayanda Chakawa, PhD
Associate Professor of Pediatrics, University of Missouri-Kansas City School of Medicine
Full BiographyCy B. Nadler, PhD
Josh Barnds & Stella Carlson Endowed Professor for Autism; Section Chief, Autism Psychology; Professor of Pediatrics, University of Missouri-Kansas City School of Medicine
Full BiographyShayla A. Sullivant, MD
Section Chief - Child and Adolescent Psychiatry, Division of Developmental and Behavioral Health; Associate Professor of Pediatrics, University of Missouri-Kansas City School of Medicine; Assistant Professor of Psychiatry and Behavioral Science, University of Kansas School of Medicine
Full Biography
The headlines are hard to ignore —rising rates of depression and anxiety in children and adolescents; disparities in accessing mental health care; increased risks for behavioral health issues for kids with neurodevelopmental diagnoses. Researchers from the Developmental and Behavioral Health Research Group at Children’s Mercy Research Institute search for answers and solutions to these issues and more. Below are three research labs dedicated to improving the lives of children everywhere.
ACCESS Lab
Ayanda Chakawa, PhD, Developmental and Behavioral Health, leads the ACCESS (Adolescent and Child Centered Engagement to Supports and Services) Behavioral Health Lab. The lab team studies how embedding behavioral health care into primary care clinics impacts access. They also study the impact that referring patients to other Children’s Mercy Kansas City (CMKC) behavioral health clinics has on accessing care. Through her ACCESS Lab research and clinical experience, Dr. Chakawa observed that many families faced challenges trying to navigate the behavioral health care system. This was even more pronounced for families whose child received a referral to another clinic for care.
Dr. Chakawa began the PATHWAY (Promoting Access To Healthy Well-Being Across Youth) Behavioral Health Program to address barriers to care by developing a culturally-relevant behavioral health care navigation model. The PATHWAY study involves piloting an individualized intervention to support families with behavioral health care navigation. Study participants are parents of youth referred to behavioral health services through primary care. The participants are from predominantly Black, Indigenous, People of Color (BIPOC) and socioeconomically disadvantaged backgrounds and speak English or Spanish. The intervention follows participants for thirteen months and includes surveys and care navigation check-ins. During the check-ins, the study team conducts motivational interviews to clarify referral information, help set goals to obtain care, and assess family confidence in meeting those goals. “This study has created space for families to explain and for us to assess what the actual barriers are. Then, we can address these barriers,” said Dr. Chakawa. “Patient-family education is a huge component in this process.”
From development to implementation, community engagement is the foundation for this study. Dr. Chakawa partners with community members from the CMKC Mental Health and Consejo de Familias Latinas y Hispanas Parent Family Advisory Councils (PFACs). In addition to the PFACs providing consultation, four parents from the PFACs form a designated community advisory board to the PATHWAY study. These parents include Emily Hamm and Jamila Weaver from the Mental Health PFAC and Brenda Quintana and Bertha “Alicia” Aldape from the Consejo de Familias Latinas y Hispanas PFAC. “The community members involved provide feedback at every phase of the study,” said Dr. Chakawa. “Their voices are there, and that is a critical component of our study.”
The community members bring their personal experience to the study. “Dr. Chakawa’s research sheds light on something families have known for so long; behavior health system navigation is challenging and complex,” shared the PATHWAY study community advisory board. “We love the collaborative effort that has gone into the project and the opportunity to be part of the change.”
Although preliminary data are limited since the PATHWAY study is still ongoing, Dr. Chakawa has noticed some trends, including issues with system-level barriers like clinic paperwork requirements or communication issues that affect the navigation process. Another data trend is that social determinants of health impact both access to care and study engagement. These determinants include economic stability, education access, health care access, neighborhood environment, and social/community environment.
Dr. Chakawa’s long-term goal is to scale up the PATHWAY intervention to include more care navigation check-in opportunities for participants and to include staff dedicated to behavioral healthcare navigation throughout the health care system.
Nadler Lab
Cy Nadler, PhD, Developmental and Behavioral Health, is the Section Chief for Autism Psychology, directs outpatient autism services at CMKC, and leads the Nadler Lab, which broadly focuses on research related to improving health care and mental health care to kids with autism and neurodevelopmental disabilities.
Dr. Nadler is the co-chair for the national Supporting Access for Everyone (SAFE) Initiative to establish best practices for supporting youth with neurodevelopmental disabilities in medical settings. In April 2024, he co-authored a consensus statement published in Pediatrics that provides the principles of health care practice for kids with neurodevelopmental disabilities and outlines actionable steps to provide equitable care. “The consensus statement is in some ways aspirational in addressing what care should look like, but it is also practical because we identify specific evidence-based examples of how to get to this aspirational goal,” said Dr. Nadler.
The process to develop this consensus statement was unique because it included input from not only developmental and behavioral health professionals but also adults with neurodevelopmental disabilities, community advocates, and caregivers. “This is really the first community-engaged description of what care should look like,” said Dr. Nadler. “Now we need to evaluate the best ways to disseminate these approaches.”
Advancing safe and effective care in hospital settings for youth with developmental disabilities and mental health conditions requires an understanding of current gaps. Dr. Nadler’s ongoing collaboration with Adrienne DePorre, MD, Hospital Medicine, and other CMKC colleagues has led to investigations on the use of physical restraint, risk factors for prolonged admissions, and even violence toward health care workers. “These projects underscore our need to better equip our colleagues with training and support proactively and collaborate with patients and families on how to improve and individualize their care experiences,” Dr. Nadler said.
The Nadler Lab is also wrapping up a study that looked across major children's hospitals to understand how they approach suicide screening for youth with autism. He noted that kids with autism are at a higher risk for suicidal ideation and attempts, but there are little real-world data available about suicide screening for this group in clinical settings. The study team sought to answer questions about the screening and response plan process as well as look at the support providers and caregivers receive. “Unfortunately, what we learned is there is no standard of practice, but this sets us up to propose research to create and test standards of care,” Dr. Nadler said.
Dr. Nadler is also a site principal investigator/co-investigator on the Study to Explore Early Development (SEED) study—one of the largest multi-site, longitudinal investigations of autism and developmental disabilities. “SEED has been instrumental in helping us understand more about the care needs for kids with developmental disabilities, including the impact of the pandemic on behavioral health,” he said. “Participants who joined the study as preschoolers are now teens or even adults, which will let us look at how their needs change over time.”
As the Nadler Lab continues its mission to improving the lives of kids with neurodevelopmental disorders, Dr. Nadler is quick to recognize the collaborative effort involved and point out that most of the team wears multiple hats, including clinical and research. “I am grateful to have such great partners within Developmental and Behavioral Health as well as across the whole hospital,” he said.
Sullivant Lab
Led by Shayla Sullivant, MD, Developmental and Behavioral Health, the Sullivant Lab focuses on identification and reduction of suicide risk among youth. While suicide is the second leading cause of death for youth, it is a preventable cause of death. Dr. Sullivant and her team developed the Prepped and Ready program to help equip parents and caregivers to manage teen health and safety issues, with an emphasis on teen suicide prevention.
“Early on in my time at Children’s Mercy, I met with many young people who had attempted suicide,” said Dr. Sullivant. “I would suggest securing firearms and medications when talking to their parents, she said. “Some parents asked me a great question: why had they never heard of this before? Those parents led me to this work.”
The goal is to make homes safer for children with actionable changes that make a difference. The Prepped and Ready team created an informational video series that parents and caregivers can watch in under an hour. The videos are available online from the CMKC website. The research team has also conducted in-person and live webinar presentations. Topics covered in the presentation include suicide prevention, home safety, vaping, eating disorders, and self-care for parents. With the variety of topics covered, researchers hope to attract all parents, not just those who consider their children at risk.
Participation in the research portion of the program is not mandatory to view or attend the presentations. Caregivers who participate in the study portion of the program complete brief online surveys before and after the program, and they receive a safety toolkit to help them enact recommended changes to secure firearms and medications at home. The safety toolkit includes a lockable medication storage box, weekly medication organizers, a bag and dish soap to dispose of old medications, and —for firearm owners— a cable gun lock or locked gun box.
Surveys completed by study participants help gauge the impact of the program and what changes families make after participating and receiving the toolkit. Participants in all three versions of the presentation reported an increase in securing firearms and medications. The study team published their findings in a Discover Mental Health article and Journal of Community Health article.
In fall 2024, Rohan Akhouri, MD, Medical Director for the Center of Childhood Safety and Emergency Medicine, will become the lead principal investigator on the project. “Dr. Akhouri brings a wealth of knowledge to this work with his background in public health and injury prevention,” said Dr. Sullivant. “I am thrilled to pass him the baton as I believe he will bring a fresh perspective to this work.
Mark Connelly, PhD, Director of Research for Developmental & Behavioral Health, served as the mentor for this project. Other team members include Hung-Wen Yeh, PhD; Meredith Scafe, PhD; Angela Guzman, MA, LCSW, LSCSW; Molly Gosnell, MS; Megan Evans; Lauren Garrett; and Sreya Mandava.
Dr. Sullivant received funding for Prepped and Ready from the Menorah Heritage Foundation, JE Dunn, and the Healthy Levy Innovation Fund from the City of Kansas City, Missouri.