References
- Chan E. Attention deficit hyperactivity disorder in children and adolescents: Epidemiology and pathogenesis. In: Connor RF, editor. UpToDate. Wolters Kluwer. [Accessed on 9 January, 2025].
- Barkley RA. Emotional dysregulation is a core component of ADHD. In: Barkley RA, editor. Attention deficit hyperactivity disorder: A handbook for diagnosis and treatment. New York: Guilford Press; 2015. pp. 81‐115.
- American Psychiatric Association. Diagnostic and statistical manual of mental disorders: DSM-5. 5th ed. Arlington, VA: American Psychiatric Association; 2013.
- Barican JL, Yung D, Schwartz C, Zheng Y, Georgiades K, Waddell C. Prevalence of childhood mental disorders in high-income countries: a systematic review and meta-analysis to inform policymaking. BMJ Ment Health. 2022;25(1):36–44.
https://doi.org/10.1136/ebmental-2021-300277 - Sacco R, Camilleri N, Eberhardt J, Umla-Runge K, Newbury-Birch D. A systematic review and meta-analysis on the prevalence of mental disorders among children and adolescents in Europe. Eur Child Adolesc Psychiatry. 2024;33(9):2877–94.
https://doi.org/10.1007/s00787-022-02131-2 - Chaulagain A, Lyhmann I, Halmoy A, Widding-Havneraas T, Nyttingnes O, Bjelland I, et al. A systematic meta-review of systematic reviews on attention deficit hyperactivity disorder. Eur Psychiatry. 2023;66(1):e90. doi: 10.1192/j.eurpsy.2023.2451
- Salari N, Ghasemi H, Abdoli N, Rahmani A, Shiri MH, Hashemian AH, et al. The global prevalence of ADHD in children and adolescents: a systematic review and meta-analysis. Ital J Pediatr. 2023;49(1):48.
https://doi.org/10.1186/s13052-023-01456-1 - The Norwegian Directorate of Health. ADHD/Hyperkinetic disorder – National professional guideline for assessment, treatment and follow up [web page]. Oslo: The Norwegian Directorate of Health; 29 February 2016 [last updated 4 May 2022; accessed on 9 March 2025]. Available from:
https://www.helsedirektoratet.no/retningslinjer/adhd - National Institute for Health and Care Excellence (NICE). Attention deficit hyperactivity disorder: diagnosis and management [web page]. London, Manchester: National Institute for Health and Care Excellence; 14 March 2018 [last updated 13 September 2019; accessed on 9 March 2025]. Available from:
https://www.nice.org.uk/guidance/ng87/chapter/Recommendations - Chan E, Fogler JM, Hammerness PG. Treatment of Attention-Deficit/Hyperactivity Disorder in Adolescents: A Systematic Review. JAMA. 2016;315(18):1997–2008. doi: 10.1001/jama.2016.5453.
- Titheradge D, Godfrey J, Eke H, Price A, Ford T, Janssens A. Why young people stop taking their attention deficit hyperactivity disorder medication: A thematic analysis of interviews with young people. Child Care Health Dev. 2022;48(5):724–35. doi: 10.1111/cch.12978.
- Hall CL, Newell K, Taylor J, Sayal K, Swift KD, Hollis C. ‘Mind the gap’--mapping services for young people with ADHD transitioning from child to adult mental health services. BMC Psychiatry. 2013;13:186. doi: 10.1186/1471-244X-13-186.
- Price A, Mitchell S, Janssens A, Eke H, Ford T, Newlove-Delgado T. In transition with attention deficit hyperactivity disorder (ADHD): children's services clinicians' perspectives on the role of information in healthcare transitions for young people with ADHD. BMC Psychiatry. 2022;22(1):251. doi: 10.1186/s12888-022-03813-6.
- Pain R, Whitman G, Milledge D. Participatory Action Research Toolkit: An Introduction to Using PAR as an Approach to Learning, Research and Action. Durham: Durham University & Lune Rivers Trust; 2012.
- Whyte WF, editor. Participatory Action Research. London: SAGE Publications; 1991.
- United Nations. Convention on the Rights of the Child. New York: United Nations; 1989.
- Norway. Pasient og brukerrettighetsloven [The Patient and User Rights Act]. 1999. Act on patient and user rights, by 1999-07-02 no. 63 [cited 14 March 2025]. Available from:
https://lovdata.no/dokument/NL/lov/1999-07-02-63 - The Ministry of Health and Care Services. [#Youth health – The Government's strategy for youth health]. Oslo: The Ministry of Health and Care Services; 2016.
- Sonuga-Barke EJS, Thapar A. The neurodiversity concept: is it helpful for clinicians and scientists? Lancet Psychiatry. 2021;8(7):559–61. doi: 10.1016/S2215-0366(21)00167-X.
- Sonuga-Barke EJS. Paradigm ‘flipping’ to reinvigorate translational science: Outlining a neurodevelopmental science framework from a ‘neurodiversity’ perspective. J Child Psychol Psychiatry. 2023;64(10):1405–08.
https://doi.org/10.1111/jcpp.13886 - Sonuga-Barke EJS, Chandler S, Lukito S, Kakoulidou M, Moore G, Cooper N, et al. Participatory translational science of neurodivergence: model for attention-deficit/hyperactivity disorder and autism research. Br J Psychiatry. 2024;224(4):127–31. doi: 10.1192/bjp.2023.151
- Storm M, Edwards A. Models of user involvement in the mental health context: intentions and implementation challenges. Psychiatr Q. 2013;84(3):313–27. doi: 10.1007/s11126-012-9247-x.
- Balint M. The doctor, his patient and the illness. 2nd ed. Edinburgh: Churchill Livingstone; 2000.
- Meland E, Schei E, Bærheim A. [Patient centered medicine-a review with emphasis on the background and documentation]. Tidsskr Nor Laegeforen. 2000;120(19):2253–6.
- Ahmad N, Ellins J, Krelle H, Lawrie M. Person-centred care: from ideas to action. Bringing together the evidence on shared decision making and self-management support. London: The Health Foundation; 2014.
- Harding E, Wait S, Scrutton J. The state of play in person-centred care: A pragmatic review of how person-centred care is defined, applied and measured, featuring selected key contributors and case studies across the field. London: The Health Policy Partnership; 2015.
- Mead N, Bower P. Patient-centredness: a conceptual framework and review of the empirical literature. Soc Sci Med. 2000;51(7):1087–110. doi: 10.1016/s0277-9536(00)00098-8.
- Wills CE. Sharing decisions with patients: Moving beyond patient-centered care. J Psychosoc Nurs Ment Health Serv. 2010;48(3):4–5. doi: 10.3928/02793695-20100202-03.
- Coulter A, Collins A. Making shared decision-making a reality. No decision about me, without me. London: The King's Fund; 2011.
- Langer DA, Jensen-Doss A. Shared decision-making in youth mental health care: Using the evidence to plan treatments collaboratively. J Clin Child Adolesc Psychol. 2018;47(5):821–31. doi: 10.1080/15374416.2016.1247358.
- Borg M, Davidson L. The nature of recovery as lived in everyday experience. Journal of Mental Health. 2008;17(2):129–40.
https://doi.org/10.1080/09638230701498382 - Karlsson B, Borg M. [Recovery: traditions, renewal and practices]. Oslo: Gyldendal akademisk; 2017.
- Millar SL, Chambers M, Giles M. Service user involvement in mental health care: an evolutionary concept analysis. Health Expect. 2016;19(2):209–21. doi: 10.1111/hex.12353. Epub 2015 Feb 13.
- Bahus M. [User participation in the health services]. In: Bolstad E, editor. The Great Norwegian Encyclopedia on snl.no. [last updated 16 September 2024; accessed on 12 January 2025]. Available from:
https://snl.no/brukermedvirkning_i_helsetjenesten - Norwegian Directorate of Health. User participation [web page]. Oslo: Center for user participation, Norwegian Directorate of Health; 17 October 2017 [updated 15 December 2022; accessed 12 January 2025]. Available from:
https://www.helsedirektoratet.no/tema/brukermedvirkning . - Viksveen P, Bjønness SE, Cardenas NE, Game JR, Berg SH, Salamonsen A, et al. User involvement in adolescents' mental healthcare: a systematic review. Eur Child Adolesc Psychiatry. 2022;31(11):1765–88. doi: 10.1007/s00787-021-01818-2.
- Castro EM, Van Regenmortel T, Vanhaecht K, Sermeus W, Van Hecke A. Patient empowerment, patient participation and patient-centeredness in hospital care: A concept analysis based on a literature review. Patient Educ Couns. 2016;99(12):1923–39.
https://doi.org/10.1016/j.pec.2016.07.026 - Jørgensen K, Rendtorff JD. Patient participation in mental health care - perspectives of healthcare professionals: an integrative review. Scand J Caring Sci. 2018;32(2):490–501. doi: 10.1111/scs.12531.
- Tambuyzer E, Pieters G, Van Audenhove C. Patient involvement in mental health care: one size does not fit all. Health Expect. 2014;17(1):138–50. doi: 10.1111/j.1369-7625.2011.00743.x.
- Arnstein SR. A ladder of citizen participation. Journal of the American Institute of Planners. 1969;35(4):216–24.
https://doi.org/10.1080/01944366908977225 - Hart R. Children's participation: From tokenism to citizenship. Florence: UNICEF International Child Development Centre; 1992.
- Shier H. Pathways to participation: Openings, opportunities and obligations. Children & Society. 2006;15(2):107–17.
https://doi.org/10.1002/chi.617 - Olsen T, Tesfai A, Lorentsson A. [Young people and participation. Use of power for beginners]. Oslo: Universitetsforlaget; 2019.
- Mjøsund NH, Vinje HF, Eriksson M, Haaland-Øverby M, Jensen SL, Kjus S, et al. Salutogenic service user involvement in nursing research: A case study. J Adv Nurs. 2018;74(9):2145–56. doi: 10.1111/jan.13708.
- Sweeney A, Morgan L. Levels and stages. In: Wallcraft J, Schrank B, Amering M, editors. Handbook of service user involvement in mental health research. Chichester, UK: Wiley-Blackwell; 2009. pp. 25–35.
- Lansdown G. Every child's right to be heard. A resource guide on the UN Committee on the Rights of the Child, general comment no. 12. Save the Children, UK; 2011.
- Coyne I, Harder M. Children's participation in decision-making: balancing protection with shared decision-making using a situational perspective. J Child Health Care. 2011;15(4):312–9. doi: 10.1177/1367493511406570.
- Feenstra B, Boland L, Lawson ML, Harrison D, Kryworuchko J, Leblanc M, et al. Interventions to support children's engagement in health-related decisions: a systematic review. BMC Pediatr. 2014;14:109. doi: 10.1186/1471-2431-14-109.
- Fiks AG, Localio AR, Alessandrini EA, Asch DA, Guevara JP. Shared decision-making in pediatrics: a national perspective. Pediatrics. 2010;126(2):306–14. doi: 10.1542/peds.2010-0526.
- Wyatt KD, List B, Brinkman WB, Prutsky Lopez G, Asi N, Erwin P, et al. Shared Decision Making in Pediatrics: A systematic review and meta-analysis. Acad Pediatr. 2015;15(6):573–83. doi: 10.1016/j.acap.2015.03.011.
- Bjønness S, Grønnestad T, Storm M. I'm not a diagnosis: Adolescents' perspectives on user participation and shared decision-making in mental healthcare. Scand J Child Adolesc Psychiatr Psychol. 2020;8:139–48. doi: 10.21307/sjcapp-2020-014
- Cheng H, Hayes D, Edbrooke-Childs J, Martin K, Chapman L, Wolpert M. What approaches for promoting shared decision-making are used in child mental health? A scoping review. Clin Psychol Psychother. 2017;24(6):O1495–O511. doi: 10.1002/cpp.2106.
- Gondek D, Edbrooke-Childs J, Velikonja T, Chapman L, Saunders F, Hayes D, et al. Facilitators and barriers to person-centred care in child and young people mental health services: A systematic review. Clin Psychol Psychother. 2016;24(4):870–86. doi: 10.1002/cpp.2052.
- Liverpool S, Pereira B, Hayes D, Wolpert M, Edbrooke-Childs J. A scoping review and assessment of essential elements of shared decision-making of parent-involved interventions in child and adolescent mental health. Eur Child Adolesc Psychiatry. 2021;30(9):1319–38. doi: 10.1007/s00787-020-01530-7.
- Arksey H, O'Malley L. Scoping studies: towards a methodological framework. Int J Soc Res Methodol. 2005;8(1):19–32.
https://doi.org/10.1080/1364557032000119616 - Levac D, Colquhoun H, O'Brien KK. Scoping studies: advancing the methodology. Implement Sci. 2010;5:69.
https://doi.org/10.1186/1748-5908-5-69 - Peters MDJ, Godfrey CM, Khalil H, McInerney P, Parker D, Soares CB. Guidance for conducting systematic scoping reviews. Int J Evid Based Healthc. 2015;13(3):141–6. doi: 10.1097/XEB.0000000000000050.
- Peters MDJ, Godfrey C, McInerney P, Munn Z, Tricco AC, Khalil H. Scoping Reviews. 2020. In: Aromataris E, Lockwood C, Porritt K, Pilla B, Jordan Z, editors. JBI Manual for Evidence Synthesis [last updated 26 March 2024; accessed on 12 March 2025]. Available from:
https://doi.org/10.46658/JBIMES-24-09 - Birkeland B, Foster K, Selbekk AS, Høie MM, Ruud T, Weimand B. The quality of life when a partner has substance use problems: a scoping review. Health Qual Life Outcomes. 2018;16(1):219. doi: 10.1186/s12955-018-1042-4.
- Tricco AC, Lillie E, Zarin W, O'Brien KK, Colquhoun H, Levac D, et al. PRISMA Extension for Scoping Reviews (PRISMA-ScR): Checklist and Explanation. Ann Intern Med. 2018;169(7):467–73. doi: 10.7326/M18-0850.
- Elo S, Kyngäs H. The qualitative content analysis process. J Adv Nurs. 2008;62(1):107–15. doi: 10.1111/j.1365-2648.2007.04569.x.
- Avisar A, Lavie-Ajayi M. The burden of treatment: Listening to stories of adolescents with ADHD about stimulant medication use. Ethical Hum Psychol Psychiatry. 2014;16(1):37–50. DOI: 10.1891/1559-4343.16.1.37
- Brinkman WB, Sherman SN, Zmitrovich AR, Visscher MO, Crosby LE, Phelan KJ, et al. In their own words: adolescent views on ADHD and their evolving role managing medication. Acad Pediatr. 2012;12(1):53–61. doi: 10.1016/j.acap.2011.10.003.
- Cheung KK, Wong IC, Ip P, Chan PK, Lin CH, Wong LY, et al. Experiences of adolescents and young adults with ADHD in Hong Kong: treatment services and clinical management. BMC Psychiatry. 2015;15:95.
https://doi.org/10.1186/s12888-015-0478-x - Mikesell L, Marti FA, Guzman JR, McCreary M, Zima BT. Attending to parent and child rights to make medication decisions during pediatric psychiatry visits. In: Lindholm C, Stevanovic M, Weiste E, editors. Joint decision making in mental health: An interactional approach. New York: Palgrave Macmillan/Springer Nature; 2020. pp. 69–94. DOI:10.1007/978-3-030-43531-8_3
- Travell C, Visser J. ‘ADHD does bad stuff to you’: young people's and parents' experiences and perceptions of Attention Deficit Hyperactivity Disorder (ADHD). Emot Behav Diffic. 2006;11(3):205–16. DOI:10.1080/13632750600833924
- Brinkman WB, Hartl Majcher J, Poling LM, Shi G, Zender M, Sucharew H, et al. Shared decision-making to improve attention-deficit hyperactivity disorder care. Patient Educ Couns. 2013;93(1):95–101. DOI: 10.1016/j.pec.2013.04.009
- Coletti DJ, Pappadopulos E, Katsiotas NJ, Berest A, Jensen PS, Kafantaris V. Parent perspectives on the decision to initiate medication treatment of attention-deficit/hyperactivity disorder. J Child Adolesc Psychopharmacol. 2012;22(3):226–37. doi: 10.1089/cap.2011.0090.
- Davis CC, Claudius M, Palinkas LA, Wong JB, Leslie LK. Putting families in the center: family perspectives on decision making and ADHD and implications for ADHD care. J Atten Disord. 2012;16(8):675–84. doi: 10.1177/1087054711413077
- Lipstein EA, Lindly OJ, Anixt JS, Britto MT, Zuckerman KE. Shared decision making in the care of children with developmental and behavioral disorders. Matern Child Health J. 2016;20(3):665–73. doi: 10.1007/s10995-015-1866-z.
- McGuinness TM. Helping parents decide on ADHD treatment for their children. J Psychosoc Nurs Ment Health Serv. 2008;46(8):23–7. doi: 10.3928/02793695-20080801-08.
- Tan D, King TR. Finding the “Sweet Spot”: Sharing the decision-making in ADHD treatment selection. Ann Gen Psychiatry. 2022;21:14.
https://doi.org/10.1186/s12991-022-00394-2 - Spencer AE, Sikov J, Loubeau JK, Zolli N, Baul T, Rabin M, et al. Six Stages of Engagement in ADHD Treatment Described by Diverse, Urban Parents. Pediatrics. 2021;148(4):e2021051261. doi: 10.1542/peds.2021-051261.
- Brinkman WB, Hartl J, Rawe LM, Sucharew H, Britto MT, Epstein JN. Physicians' shared decision-making behaviors in attention-deficit/hyperactivity disorder care. Arch Pediatr Adolesc Med. 2011;165(11):1013–9. doi: 10.1001/archpediatrics.2011.154.
- Fiks AG, Gafen A, Hughes CC, Hunter KF, Barg FK. Using freelisting to understand shared decision making in ADHD: parents' and pediatricians' perspectives. Patient Educ Couns. 2011;84(2):236–44. doi: 10.1016/j.pec.2010.07.035.
- Fiks AG, Hughes CC, Gafen A, Guevara JP, Barg FK. Contrasting parents' and pediatricians' perspectives on shared decision-making in ADHD. Pediatrics. 2011;127(1):e188–96. doi: 10.1542/peds.2010-1510.
- Honeycutt C, Sleath B, Bush PJ, Campbell W, Tudor G. Physician use of a participatory decision-making style with children with ADHD and their parents. Patient Educ Couns. 2005;57(3):327–32. doi: 10.1016/j.pec.2004.09.004.
- Bjønness S, Viksveen P, Johannessen JO, Storm M. User participation and shared decision-making in adolescent mental healthcare: a qualitative study of healthcare professionals' perspectives. Child Adolesc Psychiatry Ment Health. 2020;14:2.
https://doi.org/10.1186/s13034-020-0310-3 - Hayes D, Edbrooke-Childs J, Town R, Wolpert M, Midgley N. Barriers and facilitators to shared decision making in child and youth mental health: clinician perspectives using the Theoretical Domains Framework. Eur Child Adolesc Psychiatry. 2019;28(5):655–66. doi: 10.1007/s00787-018-1230-0.
- Hayes D, Edbrooke-Childs J, Town R, Wolpert M, Midgley N. A systematic review of shared decision making interventions in child and youth mental health: synthesising the use of theory, intervention functions, and behaviour change techniques. Eur Child Adolesc Psychiatry. 2023;32(2):209–22. doi: 10.1007/s00787-021-01782-x
- Crickard EL, O'Brien MS, Rapp CA, Holmes CL. Developing a framework to support shared decision making for youth mental health medication treatment. Community Ment Health J. 2010;46:474–81. doi: 10.1007/s10597-010-9327-z.
- Ådnanes M, Steihaug S. “You never know what happens next” - young adult service users' experience with mental health care and treatment through one year. Int J Integr Care. 2016;16(3):5. doi: 10.5334/ijic.2435
- Montoya A, Colom F, Ferrin M. Is psychoeducation for parents and teachers of children and adolescents with ADHD efficacious? A systematic literature review. Eur Psychiatry. 2011;26(3):166–75. doi: 10.1016/j.eurpsy.2010.10.005.
- Dahl V, Ramakrishnan A, Spears AP, Jorge A, Lu J, Bigio NA, et al. Psychoeducation interventions for parents and teachers of children and adolescents with ADHD: A systematic review of the literature. J Dev Phys Disabil. 2020;32:257–92.
https://doi.org/10.1007/s10882-019-09691-3 - Pillen S, Glazemakers I, Bal S. [A qualitative study of shared decision making related to psychotropic drugs in adolescence]. Tijdschr Psychiatr. 2024:66(3):125–29.
- Hogue A, Fisher JH, Dauber S. Assessing Support for Medicine Decision Making for Youth with ADHD Who Receive Therapy [Internet]. Washington (DC): Patient-Centered Outcomes Research Institute (PCORI); 2020 Sep. Available from:
https://www.ncbi.nlm.nih.gov/books/NBK594605/ doi: 10.25302/09.2020.CER.140313704 - Buitelaar JK. Optimising treatment strategies for ADHD in adolescence to minimise ‘lost in transition’ to adulthood. Epidemiol Psychiatr Sci. 2017;26(5):448–52. doi: 10.1017/S2045796017000154.
- Coghill DR. Organisation of services for managing ADHD. Epidemiol Psychiatr Sci. 2017;26(5):453–8. doi: 10.1017/S2045796016000937.
- McCarthy S, Asherson P, Coghill D, Hollis C, Murray M, Potts L, et al. Attention-deficit hyperactivity disorder: treatment discontinuation in adolescents and young adults. Br J Psychiatry. 2009;194(3):273–7. doi: 10.1192/bjp.bp.107.045245.
- Price A, Newlove-Delgado T, Eke H, Paul M, Young S, Ford T, et al. In transition with ADHD: the role of information, in facilitating or impeding young people's transition into adult services. BMC Psychiatry. 2019;19:404. doi: 10.1186/s12888-019-2284-3.
- Young S, Murphy CM, Coghill D. Avoiding the ‘twilight zone’: recommendations for the transition of services from adolescence to adulthood for young people with ADHD. BMC Psychiatry. 2011;11:174.
https://doi.org/10.1186/1471-244X-11-174 - Bussing R, Koro-Ljungberg M, Noguchi K, Mason D, Mayerson G, Garvan CW. Willingness to use ADHD treatments: a mixed methods study of perceptions by adolescents, parents, health professionals and teachers. Soc Sci Med. 2012;74(1):92–100. doi: 10.1016/j.socscimed.2011.10.009.
- Eagle T. ADHD Communities Online: Understanding Collective Medical Knowledge and Healthcare Tensions [dissertation]. Santa Cruz: University of California Santa Cruz; 2024.
- Connor TK. Participatory autism research: How consultation benefits everyone. Front. Psychol. 2021;12. doi: 10.3389/fpsyg.2021.713982
- Kakoulidou M, Pavlopoulou G, Chandler S, Lukito S, Matejko M, Jackson I, et al. Deepening the participation of neurodivergent youth in qualitative mental health research: Co-development of a general approach and the evaluation of its implementation in a study on emotion. JCPP Advances. 2024;4(4):e12287.
https://doi.org/10.1002/jcv2.12287 - MacLeod A, Manitsa I, De Brito S. Participatory research in child psychology and psychiatry: Embracing untidiness to break new ground. JCPP Advances. 2024; 4(4): e12284.
https://doi.org/10.1002/jcv2.12284