Community-based approach boosts family engagement in ADHD care

(Press-News.org) Innovative intervention delivered by trained community health workers – meaning nonclinical personnel with deep knowledge of the community – increased treatment utilization among participating families with children who have ADHD, according to a pilot study published in the Journal of Attention Disorders. This intervention for parents and caregivers, covering topics that range from education about ADHD to discussions of stigma and barriers to care, intends to reduce inequities in access to evidence-based treatment and boost family engagement in ADHD care.

“We know from previous studies that compared to White youth, Black, Hispanic, and Asian children with ADHD receive less treatment, including fewer visits with a healthcare provider and lower medication use,” said lead author Andrea Spencer, MD, Vice Chair for Research, Pritzker Department of Psychiatry and Behavioral Health at Ann & Robert H. Lurie Children’s Hospital of Chicago and Associate Professor of Psychiatry and Behavioral Sciences at Northwestern University Feinberg School of Medicine.

“We are excited to make a tangible difference for children and their families by using a community-based approach to ADHD that has proved to be so successful for other pediatric conditions, like asthma,” she said. “When so many children have an illness and access to care is inadequate, we need to think beyond individual patient interactions and develop public health solutions. This is the first study to use an intervention for ADHD delivered by community health workers.”

ADHD, a neurobiological condition that affects about 6-8 percent of children, can have lifelong consequences, including educational and occupational underachievement, family and peer conflict, and justice involvement. Treatment, which includes a combination of FDA-approved medication, behavioral therapy and school accommodations, is effective at reducing symptoms and can improve ADHD outcomes.

Dr. Spencer explained that barriers to ADHD care include logistical difficulties, such as finances, insurance, transportation and lack of childcare. Also stigma, discrimination and implicit bias affect families’ experiences with engaging in ADHD care for their children.

In developing content for the intervention, Dr. Spencer and colleagues sought guidance from a Community Advisory Board consisting of racial and ethnic minoritized caregivers of children with ADHD, public school staff, pediatric clinical providers and leaders, child mental health clinicians and child mental health equity researchers.

The intervention included an average of six, hour-long sessions during which community health workers discussed with families evidence-based treatment for ADHD, myths vs. facts, how to respond to stigma and discrimination, how to talk about ADHD in a way that is empowering to kids, how to navigate care, communicate with clinicians and advocate for their child. Participants completed research questionnaires before and after the intervention, as well as exit interviews. Content was refined based on participant feedback.

The pilot study initially included 18 caregivers of children with recently diagnosed ADHD aged 6-12 years. Fifteen caregivers completed the intervention, 16 completed all study questionnaires and 13 completed the exit interview.

“We received overwhelmingly positive feedback about the content and strategy addressing stigma in particular,” said Dr. Spencer. “Caregivers reported that the intervention helped them confront their own stigma about ADHD, as well as stigma from others. A community-based approach really can change the stigma associated with ADHD and hopefully get more kids into treatment.”

Almost all caregivers (88 percent) agreed or strongly agreed that the intervention was helpful. Ninety-four percent of caregivers reported that the intervention made them feel more confident in seeking treatment for ADHD, and many caregivers reported that the program made them more likely to consider medications (69 percent), therapy (75 percent), and school services (88 percent) for their child’s ADHD.

The percent of children receiving outpatient treatment services increased from pre- to post-intervention, including an increase in medication use (from 38 percent to 50 percent), therapy use (from 31 percent to 69 percent), and a statistically significant increase in receipt of school accommodations (from 38 percent to 88 percent).

“Based on our promising results, we are planning a larger study, a randomized clinical trial, to evaluate the effectiveness of our intervention,” said Dr. Spencer. “Ultimately, we hope to improve outcomes for children with ADHD, especially for kids from minoritized racial and ethnic backgrounds.”

Study activities were done at Boston Medical Center/Boston University Chobanian & Avedisian School of Medicine.

Ann & Robert H. Lurie Children’s Hospital of Chicago is a nonprofit organization committed to providing access to exceptional care for every child. It is the only independent, research-driven children’s hospital in Illinois and one of less than 35 nationally. This is where the top doctors go to train, practice pediatric medicine, teach, advocate, research and stay up to date on the latest treatments. Exclusively focused on children, all Lurie Children’s resources are devoted to serving their needs. Research at Lurie Children’s is conducted through Stanley Manne Children’s Research Institute, which is focused on improving child health, transforming pediatric medicine and ensuring healthier futures through the relentless pursuit of knowledge. Lurie Children’s is the pediatric training ground for Northwestern University Feinberg School of Medicine. It is ranked as one of the nation’s top children’s hospitals by U.S. News & World Report.

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