Barriers to engagement perpetuate inequities in ADHD care for children. Community Health Worker (CHW) interventions could improve treatment engagement and reduce inequities. We describe the development of a novel, manualized, 5-module CHW intervention for ADHD called START (SupporT for ADHD and Related Treatment) to increase engagement with ADHD care.
Method:
We developed START based on perspectives from racial and ethnic minoritized families with feedback from a community advisory board, and conducted a single arm, adaptive pilot feasibility study of START for primary caregivers of children aged 6 to 12 years with newly diagnosed ADHD. We collected process data, pre- and post-intervention survey data, and qualitative data via caregiver exit interviews.
Results:
Eighteen families enrolled, 15 completed START, and 16 completed study questionnaires. Median intervention duration was six sessions (IQR = 5–6) over 5 weeks (IQR = 4–8). All caregivers reported satisfaction with the quality of the intervention and materials provided and reported they would recommend START to another caregiver. Most caregivers reported that START made them more likely to consider medications (69%), therapy (75%), and school services (88%) for their ADHD. From pre- to post-intervention, median number of outpatient treatments increased from 1.0 (IQR = 1.5) to 2.0 (IQR = 0.5; p = .0034), ADHD knowledge increased (p < .0001), and median scores for 16 of 17 intervention objectives increased (p < .05).
Conclusion:
START showed excellent feasibility and acceptability and treatment utilization increased post-intervention. We refined START based on feedback from caregivers, including enhanced personalization and expanding to six modules, to prepare for testing in a clinical trial.
ArnoldL. E.HodgkinsP.KahleJ.MadhooM.KewleyG. (2020). Long-term outcomes of ADHD: Academic achievement and performance. Journal of Attention Disorders, 24(1), 73–85. https://doi.org/10.1177/1087054714566076
3.
BarnettM. L.GonzalezA.MirandaJ.ChaviraD. A.LauA. S. (2018). Mobilizing community health workers to address mental health disparities for underserved populations: A systematic review. Administration and Policy in Mental Health and Mental Health Services Research, 45(2), 195–211. https://doi.org/10.1007/s10488-017-0815-0
4.
BiedermanJ.PettyC. R.WoodworthK. Y.LomedicoA.HyderL. L.FaraoneS. V. (2012). Adult outcome of attention-deficit/hyperactivity disorder: A controlled 16-year follow-up study. The Journal of Clinical Psychiatry, 73(07), 941–950. https://doi.org/10.4088/JCP.11m07529
5.
ChackoA.HopkinsK.AcriM.MendelsohnA.DreyerB. (2020). Expanding attention-deficit/hyperactivity disorder service provision in urban socioeconomically disadvantaged communities: A pilot study. Clinical Practice in Pediatric Psychology, 8, 189–194. https://doi.org/10.1037/cpp0000321
6.
ChangZ.QuinnP. D.O’ReillyL.SjölanderA.HurK.GibbonsR.LarssonH.D’OnofrioB. M. (2020). Medication for attention-deficit/hyperactivity disorder and risk for suicide attempts. Biological Psychiatry, 88(6), 452–458. https://doi.org/10.1016/j.biopsych.2019.12.003
7.
CokerT. R.ElliottM. N.ToomeyS. L.SchwebelD. C.CuccaroP.Tortolero EmeryS.DaviesS. L.VisserS. N.SchusterM. A. (2016). Racial and ethnic disparities in ADHD diagnosis and treatment. Pediatrics, 138(3), e20160407. https://doi.org/10.1542/peds.2016-0407
8.
CokerT. R.LiljenquistK.LowryS. J.FiscellaK.WeaverM. R.OrtizJ.LaFontaineR.SilvaJ.SalaguintoT.JohnsonG.FriesemaL.Porras-JavierL.GuerraL. J. S.SzilagyiP. G. (2023). Community health workers in early childhood well-child care for Medicaid-insured children: A randomized clinical trial. JAMA, 329(20), 1757. https://doi.org/10.1001/jama.2023.7197
9.
CummingsJ. R.JiX.AllenL.LallyC.DrussB. G. (2017). Racial and ethnic differences in ADHD treatment quality among Medicaid-enrolled youth. Pediatrics, 139(6), e20162444. https://doi.org/10.1542/peds.2016-2444
10.
Dedoose. 9.0.107. Web application for managing, analyzing, and presenting qualitative and mixed method research data (Version 9.0.107). (2023). [Computer software]. Los Angeles, CA: SocioCultural Research Consultants LLC. www.dedoose.com
11.
FerrinM.Perez-AyalaV.El-AbdS.Lax-PericallT.JacobsB.BilbowA.TaylorE. (2020). A randomized controlled trial evaluating the efficacy of a psychoeducation program for families of children and adolescents with ADHD in the United Kingdom: Results after a 6-month follow-up. Journal of Attention Disorders, 24(5), 768–779. https://doi.org/10.1177/1087054715626509
12.
FiksA. G.MayneS.HughesC. C.DeBartoloE.BehrensC.GuevaraJ. P.PowerT. (2012). Development of an instrument to measure parents’ preferences and goals for the treatment of attention deficit-hyperactivity disorder. Academic Pediatrics, 12(5), 445–455. https://doi.org/10.1016/j.acap.2012.04.009
13.
FiksA. G.MayneS. L.MichelJ. J.MillerJ.AbrahamM.SuhA.JawadA. F.GuevaraJ. P.GrundmeierR. W.BlumN. J.PowerT. J. (2017). Distance-learning, ADHD quality improvement in primary care: A cluster-randomized trial. Journal of Developmental and Behavioral Pediatrics: JDBP, 38(8), 573–583. https://doi.org/10.1097/DBP.0000000000000490
14.
FoxP.PorterP. G.LobS. H.BoerJ. H.RochaD. A.AdelsonJ. W. (2007). Improving asthma-related health outcomes among low-income, multiethnic, school-aged children: Results of a demonstration project that combined continuous quality improvement and community health worker strategies. Pediatrics, 120(4), e902–e911. https://doi.org/10.1542/peds.2006-1805
15.
GuevaraJ. P.PowerT. J.BevansK.SnitzerL.LeavyS.StewartD.BroomfieldC.ShahS.GrundmeierR.MichelJ. J.BerkowitzS.BlumN. J.BryanM.GriffisH.FiksA. G. (2021). Improving care management in attention-deficit/hyperactivity disorder: An RCT. Pediatrics, 148(2), e2020031518. https://doi.org/10.1542/peds.2020-031518
16.
HarriesM. D.XuN.BertenthalM. S.LunaV.AkelM. J.VolermanA. (2023). Community health workers in schools: A systematic review. Academic Pediatrics, 23(1), 14–23. https://doi.org/10.1016/j.acap.2022.08.015
17.
ImpeyM.HeunR. (2012). Completed suicide, ideation and attempt in attention deficit hyperactivity disorder. Acta Psychiatrica Scandinavica, 125(2), 93–102. https://doi.org/10.1111/j.1600-0447.2011.01798.x
18.
MillerT. W.NiggJ. T.MillerR. L. (2009). Attention deficit hyperactivity disorder in African American children: What can be concluded from the past ten years?Clinical Psychology Review, 29(1), 77–86. https://doi.org/10.1016/j.cpr.2008.10.001
19.
Nissley-TsiopinisJ.NormandS.MautoneJ. A.FoglerJ. M.FeatherstonM.PowerT. J. (2023). Preparing families for evidence-based treatment of ADHD: Development of bootcamp for ADHD. Cognitive and Behavioral Practice, 30(3), 453–470. https://doi.org/10.1016/j.cbpra.2022.02.022
20.
NormandS.GuietJ.LeBlancV.MautoneJ. A.FoglerJ. M.Prud’homme-MaisonneuveA.PowerT. J.Nissley-TsiopinisJ. (2024). An open trial of a brief engagement program for caregivers of children with ADHD. Evidence-Based Practice in Child and Adolescent Mental Health, 9(4), 528–543. https://doi.org/10.1080/23794925.2023.2261442
21.
PolanczykG.De LimaM. S.HortaB. L.BiedermanJ.RohdeL. A. (2007). The worldwide prevalence of ADHD: A systematic review and metaregression analysis. American Journal of Psychiatry, 164(6), 942–948. https://doi.org/10.1176/ajp.2007.164.6.942
22.
RaphaelJ. L.RuedaA.LionK. C.GiordanoT. P. (2013). The role of lay health workers in pediatric chronic disease: A systematic review. Academic Pediatrics, 13(5), 408–420. https://doi.org/10.1016/j.acap.2013.04.015
23.
SchoemanR.VogesT. (2022). Attention-deficit hyperactivity disorder stigma: The silent barrier to care. The South African Journal of Psychiatry, 28, 1865. https://doi.org/10.4102/sajpsychiatry.v28i0.1865
24.
ShawM.HodgkinsP.CaciH.YoungS.KahleJ.WoodsA. G.ArnoldL. E. (2012). A systematic review and analysis of long-term outcomes in attention deficit hyperactivity disorder: Effects of treatment and non-treatment. BMC Medicine, 10(1), 99. https://doi.org/10.1186/1741-7015-10-99
25.
ShiY.Hunter GuevaraL. R.DykhoffH. J.SangaralinghamL. R.PhelanS.ZaccarielloM. J.WarnerD. O. (2021). Racial disparities in diagnosis of attention-deficit/hyperactivity disorder in a US national birth cohort. JAMA Network Open, 4(3), e210321. https://doi.org/10.1001/jamanetworkopen.2021.0321
26.
ShovalG.VisokiE.MooreT. M.DiDomenicoG. E.ArgabrightS. T.HuffnagleN. J.Alexander-BlochA. F.WallerR.KeeleL.BentonT. D.GurR. E.BarzilayR. (2021). Evaluation of attention-deficit/hyperactivity disorder medications, externalizing symptoms, and suicidality in children. JAMA Network Open, 4(6), e2111342. https://doi.org/10.1001/jamanetworkopen.2021.11342
27.
SibleyM. H.PelhamW. E.MolinaB. S. G.GnagyE. M.WaschbuschD. A.BiswasA.MacLeanM. G.BabinskiD. E.KarchK. M. (2011). The delinquency outcomes of boys with ADHD with and without comorbidity. Journal of Abnormal Child Psychology, 39(1), 21–32. https://doi.org/10.1007/s10802-010-9443-9
28.
SilversteinM.HironakaL. K.WalterH. J.FeinbergE.SandlerJ.PellicerM.ChenN.CabralH. (2015). Collaborative care for children with ADHD symptoms: A randomized comparative effectiveness trial. Pediatrics, 135(4), e858–e867. https://doi.org/10.1542/peds.2014-3221
29.
Center for Disease Control. (2022). SLAITS - National survey of the diagnosis and treatment of ADHD and Tourette syndrome. (2022). https://www.cdc.gov/nchs/slaits/ns_data.htm
30.
SpencerA. E.SikovJ.LoubeauJ. K.ZolliN.BaulT.RabinM.HasanS.RosenK.BuonocoreO.LejeuneJ.DayalR.FortunaL.BorbaC.SilversteinM. (2021). Six stages of engagement in ADHD treatment described by diverse, urban parents. Pediatrics, 148(4), e2021051261. https://doi.org/10.1542/peds.2021-051261
31.
ThomasK. C.SteinG. L.WilliamsC. S.JollesM. P.SleathB. L.MartinezM.GarcíaS. J.GuzmanL. E.WilliamsC. E.MorrisseyJ. P. (2017). Fostering activation among Latino parents of children with mental health needs: An RCT. Psychiatric Services, 68(10), 1068–1075. https://doi.org/10.1176/appi.ps.201600366
32.
VisserS. N.DanielsonM. L.BitskoR. H.HolbrookJ. R.KoganM. D.GhandourR. M.PerouR.BlumbergS. J. (2014). Trends in the parent-report of health care provider-diagnosed and medicated attention-deficit/hyperactivity disorder: United States, 2003–2011. Journal of the American Academy of Child & Adolescent Psychiatry, 53(1), 34–46.e2. https://doi.org/10.1016/j.jaac.2013.09.001
33.
VolermanA.PressV. G. (2022). The devil is in the details: Much remains unknown about optimal community health worker interventions to improve pediatric asthma outcomes. The Journal of Allergy and Clinical Immunology: In Practice, 10(12), 3194–3195. https://doi.org/10.1016/j.jaip.2022.09.035
34.
WaxmonskyJ. G.WaschbuschD. A.GroffD.JairathB.SekharD. L.SibleyM. H.LoganJ. M.FogelB. (2023). Effects of a primary care-based engagement intervention for improving use of ADHD treatments. Journal of Pediatric Health Care, 37(5), 537–547. https://doi.org/10.1016/j.pedhc.2023.04.013
35.
YangK. G.FloresM. W.CarsonN. J.CookB. L. (2022). Racial and ethnic disparities in childhood ADHD treatment access and utilization: Results from a national study. Psychiatric Services, 73(12), 1338–1345. https://doi.org/10.1176/appi.ps.202100578
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