Study: Shared Decision-Making Influences ADHD Treatment for Black Children
Low-income black children with ADHD were twice as likely to receive prescription medication when caregivers shared in the decision-making process than when they did not. Feeling dismissed or excluded from medication decisions led to caregiver doubt regarding treatment.
March 23, 2023
Low-income Black families are more likely to seek medication treatment for their children with ADHD following positive experiences and collaborative involvement with healthcare providers and schools, according to a new study published in the Journal of Attention Disorders. 1
Researchers analyzed datasets from the National Survey of Children’s Health (NSCH) that comprised 450 uninsured or publicly insured Black children with ADHD, ages 6 to 17, who were taking ADHD medication. Researchers analyzed the data to test the validity of seven themes that emerged in their initial-stage interviews with low-income Black caregivers of children with ADHD recruited from an outpatient pediatric behavioral health clinic in New Jersey. The caregivers were interviewed about their views, concerns, and accounts of treatment decisions and treatment experiences for their children; their input helped form the study’s hypotheses.
7 Hypotheses Related to ADHD Medication Decision-Making for Black Children
Researchers identified seven themes from the interviewed caregivers regarding their treatment decisions.
- Child safety and volatility related to the child’s behavior influenced treatment decisions, as did caregiver aggravation tied to the frustrations and burdens of caring for a child with ADHD. Caregivers believed that medication would decrease their children’s ADHD symptoms, such as impulsivity and inattention, and would keep their children and others safe.
- Family-centered care (FCC) and shared decision-making (SDM) were commonly reported among caregivers who felt included in their children’s treatment decisions. Some caregivers felt clinicians involved them in decision-making about their child’s treatment; others felt dismissed and believed clinicians perceived them as uneducated. Caregivers also described positive (appreciation to schools for identifying the need for treatment, administering medications, etc.) and negative (frequently disrupted by school calls, the perception that children had lower intelligence, etc.) experiences with schools.
- Caregiver mental health — caregivers and other family members commonly took medication for a psychiatric diagnosis.
- Sole parent status were associated with self-reported “feelings of being alone in dealing with the challenges of parenting a child with ADHD with a right to independence in making decisions regarding treatment,” researchers wrote.
Analysis of the NSCH data confirmed that SDM and FCC did impact caregivers’ decisions to medicate their children. Researchers reported that children whose caregivers engaged actively in the treatment decision-making process were twice as likely to take ADHD medication as were those who did not. Conversely, feeling dismissed or excluded from decision-making made caregivers apprehensive and unsure regarding medication choices for their children.
Black children who do not receive appropriate treatment can suffer severe consequences for behaviors associated with their ADHD symptoms. “Ample data shows Black students are more likely to be placed in the school-to-prison pipeline than white students,” said Tumaini Rucker Coker, M.D., MBA, Associate Professor of Pediatrics and Chief of General Pediatrics at the University of Washington School of Medicine. “Black students are suspended and expelled three times more often than white students.2 And when students are suspended or expelled for behavior, they’re almost three times more likely to be in contact with the juvenile justice system in the following year.” 3
The study also found that Black children who previously received special education services were more than twice as likely to be treated with medication than were those who never received services. However, researchers could not determine “the exact nature of the relationship between receiving special education services and taking medication for ADHD.”
Findings did not confirm a direct causal relationship between taking ADHD medication and caregiver mental health, child safety and volatility, or sole caregiver status. However, the authors wrote that “these topics warrant further discussion.”
Why Shared Decision-Making Matters
Current guidelines for treating ADHD in children focus on behavioral therapy and medication management; however, “Black children are significantly less likely to receive medication than white children due to racially based structural and attitudinal barriers,” researchers wrote. 4, 5, 6
“Sufficiently addressing disparities in care starts with understanding why racial and ethnic imbalances matter, the roots of these inequities, and their consequences for overall health and well-being,” said Coker, who discussed how barriers to ADHD diagnosis and treatment – from the clinical level to systemic factors – disproportionately impact children and adolescents of color in the presentation titled “Equity, Diversity, and ADHD: Achieving Equitable ADHD Care for African American and Latinx Children” at the 2021 APSARD Annual Virtual Meeting.
Next Steps for Clinicians
Sarah Vinson, M.D., Associate Clinical Professor of Psychiatry and Pediatrics at Morehouse School of Medicine, offered several tips for clinicians in the ADDitude article “Evaluating and Treating ADHD in African American Children: Guidance for Clinicians.”
- Clinicians should strive for cultural humility — and embrace the idea that the patient’s family is the expert on the child and their situation. “The patient’s expertise is needed, and cultivating this relationship is a two-way process,” Vinson said. “The clinician educates the patient and family about ADHD, and the caregiver informs the clinician about the child’s realities, challenges, and ideas about ADHD and other neurological and mental health issues.”
- Clinicians should learn how patients and families feel about the child’s ADHD diagnosis, the possibility of medication, and what resources the family can access. “Some families, for example, may bring up the difficulties surrounding being a Black person in a racist society, and having that compounded by mental illness and medication — both of which are still commonly stigmatized,” she said.
- Clinicians must explain what medications do and don’t do to allow patients and families to make informed choices and set realistic expectations.
- Clinicians should understand issues surrounding insurance and family dynamics. “Black children are more likely to be publicly insured, meaning that the medication formulations available are limited,” Vinson said.
- Clinicians should avoid aiming for competency alone. Vinson explained, “Being aware of and continuously learning about historical and current factors (at the local level and beyond) can help clinicians contextualize experiences and issues related to Black communities.
- White clinicians must contend with their ingrained biases and examine any defensiveness and fragility that comes with it to address larger, structural issues.
- Clinicians should know what resources local schools have available and what inequities exist regarding access to school counselors, therapists, and psychoeducational testing to inform treatment planning.
- Clinicians should be guided by an understanding that any intervention which helps the primary caregiver and family unit feel heard and informed is important.
Researchers from the Journal of Attention Disorders study reiterated Vinson’s recommendation in their report. “Clinicians must recognize that applying their expertise in concert with FCC and SDM can ensure that the most vulnerable children receive evidence-based treatment for ADHD,” they wrote. “Interventions should focus on supporting teachers to partner with low-income Black caregivers of children with ADHD and developing partnerships between school districts and medical providers to ensure appropriate referrals for ADHD care and improve access to care for vulnerable populations.”
The study had several limitations, including the lack of specificity regarding medication decision-making over time for low-income Black children with ADHD. Researchers recommended that future research focus on communication between teachers and caregivers from this demographic and the relationship between medication treatment and exit from special education services.
View Article Sources
1Glasofer, A., Dingley, C., Kim, J., Colosimo, R., & Gordon, H. R. D. (2023). Medication Decision Making in Low-Income Families of Black Children With ADHD: A Mixed Methods Study. Journal of Attention Disorders, 0(0). https://doi.org/10.1177/10870547231158382
2U.S. Department of Education Office for Civil Rights (USDEOCR). (2014). Civil rights data collection, data snapshot: School discipline. Retrieved from https://www2.ed.gov/about/of-fices/list/ocr/docs/crdc-discipline-snapshot.pdf
3Fabelo, T., Thompson, M. D., Plotkin, M., Carmichael, D., Marchbanks, M. P. III, and Booth E. A. (2011). Breaking Schools’ Rules: A Statewide Study of How School Discipline Relates to Students’ Success and Juvenile Justice Involvement. New York , NY; College Station, TX: Council of State Governments Justice Center; Public Policy Research Institute of Texas A&M University. Retrieved from https://www2.ed.gov/about/of-fices/list/ocr/docs/crdc-discipline-snapshot.pdf
4Bax, A. C., Bard, D. E., Cuffe, S. P., McKeown, R. E., Wolraich, M. L. (2019). The Association Between Race/Ethnicity and Socioeconomic Factors and the Diagnosis and Treatment of Children with Attention-Deficit Hyperactivity Disorder. Journal of Developmental & Behavioral Pediatrics, 40(2), 81–91. DOI: 10.1097/DBP.0000000000000626
5Danielson, M. L., Bitsko R. H., Ghandour R. M., Holbrook J. R., Kogan M. D., Blumberg S. J. (2018a). Prevalence of Parent-Reported ADHD Diagnosis and Associated Treatment Among U.S. Children and Adolescents. Journal of Clinical Child & Adolescent Psychology, 47, 199–212. https://doi.org/10.1080/15374416.2017.1417860
6Rostain, A. L., Ramsay J. R., Waite R. (2015). Cultural background and barriers to mental health care for African American adults. Journal of Clinical Psychiatry, 76, 279–283. https:0.4088/JCP.13008co5c