Learning Through Focus Groups with Parents, Educators, and Healthcare Providers About the Child’s Journey from Diagnosis to Treatment Adherence for ADHD
Publication: Canadian Journal of Community Mental Health
25 July 2024
Abstract
The journey of obtaining a diagnosis and treatment for children and youth with ADHD can be challenging for all those involved. Focus groups were conducted with parents (n = 21), educators (n = 76), and healthcare providers (n = 39) to gather information regarding perceptions of this journey, especially as it relates to treatment utilization and adherence. Three cross-cutting categories emerged: the impact of socio-economic variables, the lack of integrated and continuity of care for ADHD, and the stigma surrounding ADHD and treatments. The results help to determine what is needed to support families to facilitate successful treatment for their child with ADHD.
Résumé
Le parcours en vue d’obtenir un diagnostic et un traitement pour les enfants et les jeunes atteints d’un TDAH peut être un défi pour toutes les personnes concernées. Des groupes de discussion ont été organisés avec des parents (n = 21), des éducateurs (n = 76) et des prestataires de soins de santé (n = 39) afin de recueillir des informations sur les perceptions de ce parcours, notamment en ce qui concerne l’utilisation et l’adhésion au traitement. Trois catégories transversales ont émergé : l’impact des variables socioéconomiques, le manque d’intégration et de continuité des soins pour le TDAH, et la stigmatisation entourant le TDAH et les traitements. Les résultats permettent de déterminer ce qui est nécessaire pour soutenir les familles afin de faciliter la réussite du traitement de leur enfant atteint d’un TDAH.
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References
American Academy of Pediatrics 2011 ADHD: Clinical practice guideline for the diagnosis, evaluation, and treatment of attention-deficit/hyperactivity disorder in children and adolescents Pediatrics 128 5 1 -16
Biederman J., Fried R., DiSalvo M., Storch B., Pulli A., Woodworth K. Y., Biederman I., Faraone S. V., and Perlis R. H. 2019 Evidence of low adherence to stimulant medication among children and youths with ADHD: An electronic health records study Psychiatric Services 70 10 874 -880 https://doi.org/10.1176/appi.ps.201800515
Brown R. T., Borden K. A., Wynne M. E., Spunt A. L., and Clingerman S. R. 1987 Compliance with pharmacological and cognitive treatments for attention deficit disorder Journal of the American Academy of Child & Adolescent Psychiatry 26 4 521 -526 https://doi.org/10.1097/00004583-198707000-00010
Carter S. M. and Little M. 2007 Justifying knowledge, justifying method, taking action: Epistemologies, methodologies, and methods in qualitative research Qualitative Health Research 17 1316 -1328
Chan E., Fogler J. M., and Hammerness P. G. 2016 Treatment of attention-deficit/hyperactivity disorder in adolescents: A systematic review JAMA 315 18 1997 -2008
Corkum P., Bessey M., McGonnell M., and Dorbeck A. 2015 Barriers to evidence-based treatment for children with attention-deficit/hyperactivity disorder ADHD Attention Deficit Hyperactivity Disorder 7 1 49 -74
Corkum P., Rimer P., and Schachar R. 1999 Parental knowledge of attention-deficit hyperactivity disorder and opinions of treatment options: Impact on enrolment and adherence to a 12–month treatment trial The Canadian Journal of Psychiatry/La Revue Canadienne de Psychiatrie 44 10 1043 -1048 https://doi.org/10.1177/070674379904401011
Currie J. and Stabile M. 2006 Child mental health and human capital accumulation: The case of ADHD Journal of Health Economics 25 6 1094 -1118
Gajria K., Lu M., Sikirica V., Greven P., Zhong Y., Qin P., and Xie J. 2014 Adherence, persistence, and medication discontinuation in patients with attention-deficit/hyperactivity disorder—A systematic literature review Neuropsychiatric Disease and Treatment 10 1543 -1569
Gau S. S. F., Shen H.-Y., Chou M.-C., Tang C.-S., Chiu Y.-N., and Gau C.-S. 2006 Determinants of adherence to methylphenidate and the impact of poor adherence on maternal and family measures Journal of Child and Adolescent Psychopharmacology 16 3 286 -297 https://doi.org/10.1089/cap.2006.16.286
Groenman A. P., Hornstra R., Hoekstra P. J., Steenhuis L., Aghebati A., Boyer B. E., Buitelaar J. K., Chronis-Tuscano A., Daley D., Dehkordian P., Dvorsky M., Franke N., DuPaul G. J., Gershy N., Harvey E., Hennig T., Herbert S., Langberg J., Mautone J. A., and van den Hoofdakker B. J. 2022 An individual participant data meta-analysis: Behavioral treatments for children and adolescents with attention-deficit/hyperactivity disorder Journal of the American Academy of Child & Adolescent Psychiatry 61 2 144 -158 https://doi.org/10.1016/j.jaac.2021.02.024
Harpin V., Mazzone L., Raynaud J. P., Kahle J., and Hodgkins P. 2016 Long-term outcomes of ADHD: A systematic review of self-esteem and social function Journal of Attention Disorders 20 4 295 -305
Hodgson K., Hutchinson A. D., and Denson L. 2014 Nonpharmacological treatments for ADHD: A meta-analytic review Journal of Attention Disorders 18 4 275 -282 https://doi.org/10.1177/1087054712444732
Lebowitz M. S. 2016 Stigmatization of ADHD: A developmental review Journal of Attention Disorders 20 3 199 -205
McGonnell M., Corkum P., McKinnon M., MacPherson M., Williams T., Davidson C., Jones D. B., and Stephenson D. 2009 Doing it right: An interdisciplinary model for the diagnosis of ADHD Journal of the Canadian Academy of Child and Adolescent Psychiatry 18 4 283 -286
McKeague L., Hennessy E., O’Driscoll C., and Heary C. 2015 Retrospective accounts of self-stigma experienced by young people with attention-deficit/hyperactivity disorder (ADHD) or depression Psychiatric Rehabilitation Journal 38 2 158 -163 https://doi.org/10.1037/prj0000121
Miller A. R., Condin C. J., McKellin W. H., Shaw N., Klassen A. F., and Sheps S. 2009 Continuity of care for children with complex chronic health conditions: Parents’ perspectives BMC Health Services Research 9 1 242
Nguyen P. T. and Hinshaw S. P. 2020 Understanding the Stigma Associated with ADHD: Hope for the Future? ADHD Report (2020) 28 5 1 -11 https//doi.org/10.1521/adhd.2020.28.5.1
Poetz, A., & Phipps, D. J. (2018). Identifying and prioritizing stakeholder needs in neurodevelopmental conditions in Canada: Stakeholder engagement activity report – addendum. Kids Brain Health Network. https://kidsbrainhealth.ca/wp-content/uploads/2018/02/Stakeholder_Engagement_Activity_Report_2017.pdf
Polanczyk G. V., Willcutt E. G., Salum G. A., Kieling C., and Rohde L. A. 2014 ADHD prevalence estimates across three decades: An updated systematic review and meta-regression analysis International Journal of Epidemiology 43 2 434 -442
Rapport M. D., Orban S. A., Kofler M. J., and Friedman L. M. 2013 Do programs designed to train working memory, other executive functions, and attention benefit children with ADHD? A meta-analytic review of cognitive, academic, and behavioral outcomes Clinical Psychology Review 33 8 1237 -1252
Rashid M. A., Lovick S., and Llanwarne N. R. 2018 Medication-taking experiences in attention deficit hyperactivity disorder: A systematic review Family Practice 35 2 142 -150 https://doi.org/10.1093/fampra/cmx088
Rieppi R., Greenhill L. L., Ford R. E., Chuang S., Wu M., Davies M., and Wigal T. 2002 Socioeconomic status as a moderator of ADHD treatment outcomes Journal of the American Academy of Child & Adolescent Psychiatry 41 3 269 -277 https://doi.org/10.1097/00004583-200203000-00006
Santos G. M., Santos E. M., Mendes G. D., Fragoso Y. D., Souza M. R., and Martimbianco A. L. C. 2021 A review of Cochrane reviews on pharmacological treatment for attention deficit hyperactivity disorder Dementia & Neuropsychologia 15 4 421 -427 https://doi.org/10.1590/1980-57642021dn15-040001
Schatz N. K., Fabiano G. A., Cunningham C. E., Waschbusch D. A., Jerome S., Lupas K., and Morris K. L. 2015 Systematic review of patients’ and parents’ preferences for ADHD treatment options and processes of care The Patient-Patient-Centered Outcomes Research 8 6 483 -497
Shahidullah J. D., Carlson J. S., Haggerty D., and Lancaster B. M. 2018 Integrated care models for ADHD in children and adolescents: A systematic review Families, Systems, & Health 36 2 233 -247 https://doi.org/10.1037/fsh0000356
Sibley M. H., Kuriyan A. B., Evans S. W., Waxmonsky J. G., and Smith B. H. 2014 Pharmacological and psychosocial treatments for adolescents with ADHD: An updated systematic review of the literature Clinical Psychology Review 34 3 218 -232
Sleath B., Carpenter D. M., Sayner R., Thomas K., Mann L., Sage A., Sulzer S. H., and Sandler A. D. 2017 Youth views on communication about ADHD and medication adherence Community Mental Health Journal 53 4 438 -444 https://doi.org/10.1007/s10597-016-0078-3
Spencer A. E., Sikov J., Loubeau J. K., Zolli N., Baul T., Rabin M., Hasan S., Rosen K., Buonocore O., Lejeune J., Dayal R., Fortuna L., Borba C., and Silverstein M. 2021 Six stages of engagement in ADHD treatment described by diverse, urban parents Pediatrics 148 4 https://doi.org/10.1542/peds.2021-051261
Statistics Canada. (2011, February 11). From urban areas to population centres. http://www.statcan.gc.ca/eng/subjects/standard/sgc/notice/sgc-06
Treuer T., Méndez L., Montgomery W., and Wu S. 2016 Factors affecting treatment adherence to atomoxetine in ADHD: A systematic review Neuropsychiatric Disease and Treatment 12 1061
Vears D. F. and Gillam L. 2022 Inductive content analysis: A guide for beginning qualitative researchers Focus on Health Professional Education 23 1 111 -127
Villodas M. T., McBurnett K., Kaiser N., Rooney M., and Pfiffner L. J. 2014 Additive effects of parent adherence on social and behavioral outcomes of a collaborative school-home behavioral intervention for ADHD Child Psychiatry and Human Development 45 3 348
Walker-Noack L., Corkum P., Elik N., and Fearon I. 2013 Youth perceptions of attention-deficit/hyperactivity disorder and barriers to treatment Canadian Journal of School Psychology 28 2 193 -218 https://doi.org/10.1177/082957351349123
World Health Organization. (2003). Adherence to long-term therapies: Evidence for action. World Health Organization. https://apps.who.int/iris/handle/10665/42682
Wright N., Moldavsky M., Schneider J., Chakrabarti I., Coates J., Daley D., Kochhar P., Mills J., Sorour W., and Sayal K. 2015 Practitioner review: Pathways to care for ADHD—A systematic review of barriers and facilitators Journal of Child Psychology and Psychiatry 56 6 598 -617 https://doi.org/10.1007/s10578-013-0405-7
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Canadian Journal of Community Mental Health
Volume 43 • Number 2 • June 2024
Pages: 1 - 29
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Version of record online: 25 July 2024
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Penny Corkum, Gabrielle Rigney, Melissa McGonnell, and Carolin Van Voorst. 2024. Learning Through Focus Groups with Parents, Educators, and Healthcare Providers About the Child’s Journey from Diagnosis to Treatment Adherence for ADHD. Canadian Journal of Community Mental Health.
43(2): 1-29. https://doi.org/10.7870/cjcmh-2024-010
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