Struggling to be heard: A scoping review of user participation in ADHD mental healthcare for children and adolescents

1. 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]. ChanE Attention deficit hyperactivity disorder in children and adolescents: Epidemiology and pathogenesis In: ConnorRF editor. UpToDate. Wolters Kluwer. [Accessed on 9 January, 2025]. Search in Google Scholar

2. 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. BarkleyRA Emotional dysregulation is a core component of ADHD In: BarkleyRA editor. Attention deficit hyperactivity disorder: A handbook for diagnosis and treatment New York Guilford Press 2015 81 115 Search in Google Scholar

3. American Psychiatric Association. Diagnostic and statistical manual of mental disorders: DSM-5. 5th ed. Arlington, VA: American Psychiatric Association; 2013. American Psychiatric Association Diagnostic and statistical manual of mental disorders: DSM-5 5th ed. Arlington, VA American Psychiatric Association 2013 Search in Google Scholar

4. 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 BaricanJL YungD SchwartzC ZhengY GeorgiadesK WaddellC 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 Search in Google Scholar

5. 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 SaccoR CamilleriN EberhardtJ Umla-RungeK Newbury-BirchD 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 Search in Google Scholar

6. 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 ChaulagainA LyhmannI HalmoyA Widding-HavneraasT NyttingnesO BjellandI A systematic meta-review of systematic reviews on attention deficit hyperactivity disorder Eur Psychiatry. 2023 66 1 e90 10.1192/j.eurpsy.2023.2451 Open DOISearch in Google Scholar

7. 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 SalariN GhasemiH AbdoliN RahmaniA ShiriMH HashemianAH 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 Search in Google Scholar

8. 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 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 Search in Google Scholar

9. 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 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 Search in Google Scholar

10. 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. ChanE FoglerJM HammernessPG Treatment of Attention-Deficit/Hyperactivity Disorder in Adolescents: A Systematic Review JAMA. 2016 315 18 1997 2008 10.1001/jama.2016.5453 Open DOISearch in Google Scholar

11. 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. TitheradgeD GodfreyJ EkeH PriceA FordT JanssensA 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 10.1111/cch.12978 Open DOISearch in Google Scholar

12. 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. HallCL NewellK TaylorJ SayalK SwiftKD HollisC ‘Mind the gap’--mapping services for young people with ADHD transitioning from child to adult mental health services BMC Psychiatry. 2013 13 186 10.1186/1471-244X-13-186 Open DOISearch in Google Scholar

13. 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. PriceA MitchellS JanssensA EkeH FordT Newlove-DelgadoT 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 10.1186/s12888-022-03813-6 Open DOISearch in Google Scholar

14. 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. PainR WhitmanG MilledgeD Participatory Action Research Toolkit: An Introduction to Using PAR as an Approach to Learning, Research and Action Durham Durham University & Lune Rivers Trust 2012 Search in Google Scholar

15. Whyte WF, editor. Participatory Action Research. London: SAGE Publications; 1991. WhyteWF editor. Participatory Action Research London SAGE Publications 1991 Search in Google Scholar

16. United Nations. Convention on the Rights of the Child. New York: United Nations; 1989. United Nations Convention on the Rights of the Child New York United Nations 1989 Search in Google Scholar

17. 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 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 Search in Google Scholar

18. 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. 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 Search in Google Scholar

19. 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-BarkeEJS ThaparA The neurodiversity concept: is it helpful for clinicians and scientists? Lancet Psychiatry. 2021 8 7 559 61 10.1016/S2215-0366(21)00167-X Open DOISearch in Google Scholar

20. 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-BarkeEJS 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 Search in Google Scholar

21. 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 Sonuga-BarkeEJS ChandlerS LukitoS KakoulidouM MooreG CooperN Participatory translational science of neurodivergence: model for attention-deficit/hyperactivity disorder and autism research Br J Psychiatry. 2024 224 4 127 31 10.1192/bjp.2023.151 Open DOISearch in Google Scholar

22. 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. StormM EdwardsA Models of user involvement in the mental health context: intentions and implementation challenges Psychiatr Q. 2013 84 3 313 27 10.1007/s11126-012-9247-x Open DOISearch in Google Scholar

23. Balint M. The doctor, his patient and the illness. 2nd ed. Edinburgh: Churchill Livingstone; 2000. BalintM The doctor, his patient and the illness 2nd ed. Edinburgh Churchill Livingstone 2000 Search in Google Scholar

24. 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. MelandE ScheiE BærheimA [Patient centered medicine-a review with emphasis on the background and documentation] Tidsskr Nor Laegeforen. 2000 120 19 2253 6 Search in Google Scholar

25. 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. AhmadN EllinsJ KrelleH LawrieM Person-centred care: from ideas to action. Bringing together the evidence on shared decision making and self-management support London The Health Foundation 2014 Search in Google Scholar

26. 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. HardingE WaitS ScruttonJ 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 Search in Google Scholar

27. 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. MeadN BowerP Patient-centredness: a conceptual framework and review of the empirical literature Soc Sci Med. 2000 51 7 1087 110 10.1016/s0277-9536(00)00098-8 Open DOISearch in Google Scholar

28. 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. WillsCE Sharing decisions with patients: Moving beyond patient-centered care J Psychosoc Nurs Ment Health Serv. 2010 48 3 4 5 10.3928/02793695-20100202-03 Open DOISearch in Google Scholar

29. Coulter A, Collins A. Making shared decision-making a reality. No decision about me, without me. London: The King's Fund; 2011. CoulterA CollinsA Making shared decision-making a reality. No decision about me, without me London The King's Fund 2011 Search in Google Scholar

30. 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. LangerDA Jensen-DossA 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 10.1080/15374416.2016.1247358 Open DOISearch in Google Scholar

31. 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 BorgM DavidsonL The nature of recovery as lived in everyday experience Journal of Mental Health. 2008 17 2 129 40 https://doi.org/10.1080/09638230701498382 Search in Google Scholar

32. Karlsson B, Borg M. [Recovery: traditions, renewal and practices]. Oslo: Gyldendal akademisk; 2017. KarlssonB BorgM [Recovery: traditions, renewal and practices] Oslo Gyldendal akademisk 2017 Search in Google Scholar

33. 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. MillarSL ChambersM GilesM Service user involvement in mental health care: an evolutionary concept analysis Health Expect. 2016 19 2 209 21 10.1111/hex.12353 Epub 2015 Feb 13. Open DOISearch in Google Scholar

34. 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 BahusM [User participation in the health services] In: BolstadE 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 Search in Google Scholar

35. 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. 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. Search in Google Scholar

36. 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. ViksveenP BjønnessSE CardenasNE GameJR BergSH SalamonsenA User involvement in adolescents' mental healthcare: a systematic review Eur Child Adolesc Psychiatry. 2022 31 11 1765 88 10.1007/s00787-021-01818-2 Open DOISearch in Google Scholar

37. 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 CastroEM Van RegenmortelT VanhaechtK SermeusW Van HeckeA 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 Search in Google Scholar

38. 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. JørgensenK RendtorffJD Patient participation in mental health care - perspectives of healthcare professionals: an integrative review Scand J Caring Sci. 2018 32 2 490 501 10.1111/scs.12531 Open DOISearch in Google Scholar

39. 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. TambuyzerE PietersG Van AudenhoveC Patient involvement in mental health care: one size does not fit all Health Expect. 2014 17 1 138 50 10.1111/j.1369-7625.2011.00743.x Open DOISearch in Google Scholar

40. 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 ArnsteinSR A ladder of citizen participation Journal of the American Institute of Planners. 1969 35 4 216 24 https://doi.org/10.1080/01944366908977225 Search in Google Scholar

41. Hart R. Children's participation: From tokenism to citizenship. Florence: UNICEF International Child Development Centre; 1992. HartR Children's participation: From tokenism to citizenship Florence UNICEF International Child Development Centre 1992 Search in Google Scholar

42. Shier H. Pathways to participation: Openings, opportunities and obligations. Children & Society. 2006;15(2):107–17. https://doi.org/10.1002/chi.617 ShierH Pathways to participation: Openings, opportunities and obligations Children & Society. 2006 15 2 107 17 https://doi.org/10.1002/chi.617 Search in Google Scholar

43. Olsen T, Tesfai A, Lorentsson A. [Young people and participation. Use of power for beginners]. Oslo: Universitetsforlaget; 2019. OlsenT TesfaiA LorentssonA [Young people and participation. Use of power for beginners] Oslo Universitetsforlaget 2019 Search in Google Scholar

44. 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. MjøsundNH VinjeHF ErikssonM Haaland-ØverbyM JensenSL KjusS Salutogenic service user involvement in nursing research: A case study J Adv Nurs. 2018 74 9 2145 56 10.1111/jan.13708 Open DOISearch in Google Scholar

45. 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. SweeneyA MorganL Levels and stages In: WallcraftJ SchrankB AmeringM editors. Handbook of service user involvement in mental health research Chichester, UK Wiley-Blackwell 2009 25 35 Search in Google Scholar

46. 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. LansdownG 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 Search in Google Scholar

47. 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. CoyneI HarderM 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 10.1177/1367493511406570 Open DOISearch in Google Scholar

48. 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. FeenstraB BolandL LawsonML HarrisonD KryworuchkoJ LeblancM Interventions to support children's engagement in health-related decisions: a systematic review BMC Pediatr. 2014 14 109 10.1186/1471-2431-14-109 Open DOISearch in Google Scholar

49. 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. FiksAG LocalioAR AlessandriniEA AschDA GuevaraJP Shared decision-making in pediatrics: a national perspective Pediatrics. 2010 126 2 306 14 10.1542/peds.2010-0526 Open DOISearch in Google Scholar

50. 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. WyattKD ListB BrinkmanWB Prutsky LopezG AsiN ErwinP Shared Decision Making in Pediatrics: A systematic review and meta-analysis Acad Pediatr. 2015 15 6 573 83 10.1016/j.acap.2015.03.011 Open DOISearch in Google Scholar

51. 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 BjønnessS GrønnestadT StormM 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 10.21307/sjcapp-2020-014 Open DOISearch in Google Scholar

52. 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. ChengH HayesD Edbrooke-ChildsJ MartinK ChapmanL WolpertM What approaches for promoting shared decision-making are used in child mental health? A scoping review Clin Psychol Psychother. 2017 24 6 O1495 O511 10.1002/cpp.2106 Open DOISearch in Google Scholar

53. 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. GondekD Edbrooke-ChildsJ VelikonjaT ChapmanL SaundersF HayesD 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 10.1002/cpp.2052 Open DOISearch in Google Scholar

54. 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. LiverpoolS PereiraB HayesD WolpertM Edbrooke-ChildsJ 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 10.1007/s00787-020-01530-7 Open DOISearch in Google Scholar

55. 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 ArkseyH O'MalleyL Scoping studies: towards a methodological framework Int J Soc Res Methodol. 2005 8 1 19 32 https://doi.org/10.1080/1364557032000119616 Search in Google Scholar

56. 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 LevacD ColquhounH O'BrienKK Scoping studies: advancing the methodology Implement Sci. 2010 5 69 https://doi.org/10.1186/1748-5908-5-69 Search in Google Scholar

57. 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. PetersMDJ GodfreyCM KhalilH McInerneyP ParkerD SoaresCB Guidance for conducting systematic scoping reviews Int J Evid Based Healthc. 2015 13 3 141 6 10.1097/XEB.0000000000000050 Open DOISearch in Google Scholar

58. 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 PetersMDJ GodfreyC McInerneyP MunnZ TriccoAC KhalilH Scoping Reviews 2020 In: AromatarisE LockwoodC PorrittK PillaB JordanZ 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 Search in Google Scholar

59. 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. BirkelandB FosterK SelbekkAS HøieMM RuudT WeimandB The quality of life when a partner has substance use problems: a scoping review Health Qual Life Outcomes. 2018 16 1 219 10.1186/s12955-018-1042-4 Open DOISearch in Google Scholar

60. 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. TriccoAC LillieE ZarinW O'BrienKK ColquhounH LevacD PRISMA Extension for Scoping Reviews (PRISMA-ScR): Checklist and Explanation Ann Intern Med. 2018 169 7 467 73 10.7326/M18-0850 Open DOISearch in Google Scholar

61. 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. EloS KyngäsH The qualitative content analysis process J Adv Nurs. 2008 62 1 107 15 10.1111/j.1365-2648.2007.04569.x Open DOISearch in Google Scholar

62. 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 AvisarA Lavie-AjayiM The burden of treatment: Listening to stories of adolescents with ADHD about stimulant medication use Ethical Hum Psychol Psychiatry. 2014 16 1 37 50 10.1891/1559-4343.16.1.37 Open DOISearch in Google Scholar

63. 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. BrinkmanWB ShermanSN ZmitrovichAR VisscherMO CrosbyLE PhelanKJ In their own words: adolescent views on ADHD and their evolving role managing medication Acad Pediatr. 2012 12 1 53 61 10.1016/j.acap.2011.10.003 Open DOISearch in Google Scholar

64. 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 CheungKK WongIC IpP ChanPK LinCH WongLY 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 Search in Google Scholar

65. 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 MikesellL MartiFA GuzmanJR McCrearyM ZimaBT Attending to parent and child rights to make medication decisions during pediatric psychiatry visits In: LindholmC StevanovicM WeisteE editors. Joint decision making in mental health: An interactional approach New York Palgrave Macmillan/Springer Nature 2020 69 94 10.1007/978-3-030-43531-8_3 Open DOISearch in Google Scholar

66. 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 TravellC VisserJ ‘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 10.1080/13632750600833924 Open DOISearch in Google Scholar

67. 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 BrinkmanWB Hartl MajcherJ PolingLM ShiG ZenderM SucharewH Shared decision-making to improve attention-deficit hyperactivity disorder care Patient Educ Couns. 2013 93 1 95 101 10.1016/j.pec.2013.04.009 Open DOISearch in Google Scholar

68. 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. ColettiDJ PappadopulosE KatsiotasNJ BerestA JensenPS KafantarisV Parent perspectives on the decision to initiate medication treatment of attention-deficit/hyperactivity disorder J Child Adolesc Psychopharmacol. 2012 22 3 226 37 10.1089/cap.2011.0090 Open DOISearch in Google Scholar

69. 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 DavisCC ClaudiusM PalinkasLA WongJB LeslieLK 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 10.1177/1087054711413077 Open DOISearch in Google Scholar

70. 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. LipsteinEA LindlyOJ AnixtJS BrittoMT ZuckermanKE Shared decision making in the care of children with developmental and behavioral disorders Matern Child Health J. 2016 20 3 665 73 10.1007/s10995-015-1866-z Open DOISearch in Google Scholar

71. 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. McGuinnessTM Helping parents decide on ADHD treatment for their children J Psychosoc Nurs Ment Health Serv. 2008 46 8 23 7 10.3928/02793695-20080801-08 Open DOISearch in Google Scholar

72. 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 TanD KingTR 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 Search in Google Scholar

73. 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. SpencerAE SikovJ LoubeauJK ZolliN BaulT RabinM Six Stages of Engagement in ADHD Treatment Described by Diverse, Urban Parents Pediatrics. 2021 148 4 e2021051261 10.1542/peds.2021-051261 Open DOISearch in Google Scholar

74. 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. BrinkmanWB HartlJ RaweLM SucharewH BrittoMT EpsteinJN Physicians' shared decision-making behaviors in attention-deficit/hyperactivity disorder care Arch Pediatr Adolesc Med. 2011 165 11 1013 9 10.1001/archpediatrics.2011.154 Open DOISearch in Google Scholar

75. 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. FiksAG GafenA HughesCC HunterKF BargFK Using freelisting to understand shared decision making in ADHD: parents' and pediatricians' perspectives Patient Educ Couns. 2011 84 2 236 44 10.1016/j.pec.2010.07.035 Open DOISearch in Google Scholar

76. 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. FiksAG HughesCC GafenA GuevaraJP BargFK Contrasting parents' and pediatricians' perspectives on shared decision-making in ADHD Pediatrics. 2011 127 1 e188 96 10.1542/peds.2010-1510 Open DOISearch in Google Scholar

77. 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. HoneycuttC SleathB BushPJ CampbellW TudorG Physician use of a participatory decision-making style with children with ADHD and their parents Patient Educ Couns. 2005 57 3 327 32 10.1016/j.pec.2004.09.004 Open DOISearch in Google Scholar

78. 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 BjønnessS ViksveenP JohannessenJO StormM 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 Search in Google Scholar

79. 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. HayesD Edbrooke-ChildsJ TownR WolpertM MidgleyN 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 10.1007/s00787-018-1230-0 Open DOISearch in Google Scholar

80. 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 HayesD Edbrooke-ChildsJ TownR WolpertM MidgleyN 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 10.1007/s00787-021-01782-x Open DOISearch in Google Scholar

81. 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. CrickardEL O'BrienMS RappCA HolmesCL Developing a framework to support shared decision making for youth mental health medication treatment Community Ment Health J. 2010 46 474 81 10.1007/s10597-010-9327-z Open DOISearch in Google Scholar

82. 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 ÅdnanesM SteihaugS “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 10.5334/ijic.2435 Open DOISearch in Google Scholar

83. 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. MontoyaA ColomF FerrinM Is psychoeducation for parents and teachers of children and adolescents with ADHD efficacious? A systematic literature review Eur Psychiatry. 2011 26 3 166 75 10.1016/j.eurpsy.2010.10.005 Open DOISearch in Google Scholar

84. 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 DahlV RamakrishnanA SpearsAP JorgeA LuJ BigioNA 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 Search in Google Scholar

85. 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. PillenS GlazemakersI BalS [A qualitative study of shared decision making related to psychotropic drugs in adolescence] Tijdschr Psychiatr. 2024 66 3 125 29 Search in Google Scholar

86. 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 HogueA FisherJH DauberS 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/ 10.25302/09.2020.CER.140313704 Open DOISearch in Google Scholar

87. 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. BuitelaarJK Optimising treatment strategies for ADHD in adolescence to minimise ‘lost in transition’ to adulthood Epidemiol Psychiatr Sci. 2017 26 5 448 52 10.1017/S2045796017000154 Open DOISearch in Google Scholar

88. Coghill DR. Organisation of services for managing ADHD. Epidemiol Psychiatr Sci. 2017;26(5):453–8. doi: 10.1017/S2045796016000937. CoghillDR Organisation of services for managing ADHD Epidemiol Psychiatr Sci. 2017 26 5 453 8 10.1017/S2045796016000937 Open DOISearch in Google Scholar

89. 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. McCarthyS AshersonP CoghillD HollisC MurrayM PottsL Attention-deficit hyperactivity disorder: treatment discontinuation in adolescents and young adults Br J Psychiatry. 2009 194 3 273 7 10.1192/bjp.bp.107.045245 Open DOISearch in Google Scholar

90. 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. PriceA Newlove-DelgadoT EkeH PaulM YoungS FordT In transition with ADHD: the role of information, in facilitating or impeding young people's transition into adult services BMC Psychiatry. 2019 19 404 10.1186/s12888-019-2284-3 Open DOISearch in Google Scholar

91. 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 YoungS MurphyCM CoghillD 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 Search in Google Scholar

92. 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. BussingR Koro-LjungbergM NoguchiK MasonD MayersonG GarvanCW 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 10.1016/j.socscimed.2011.10.009 Open DOISearch in Google Scholar

93. Eagle T. ADHD Communities Online: Understanding Collective Medical Knowledge and Healthcare Tensions [dissertation]. Santa Cruz: University of California Santa Cruz; 2024. EagleT ADHD Communities Online: Understanding Collective Medical Knowledge and Healthcare Tensions [dissertation] Santa Cruz University of California Santa Cruz 2024 Search in Google Scholar

94. Connor TK. Participatory autism research: How consultation benefits everyone. Front. Psychol. 2021;12. doi: 10.3389/fpsyg.2021.713982 ConnorTK Participatory autism research: How consultation benefits everyone Front. Psychol. 2021 12 10.3389/fpsyg.2021.713982 Open DOISearch in Google Scholar

95. 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 KakoulidouM PavlopoulouG ChandlerS LukitoS MatejkoM JacksonI 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 Search in Google Scholar

96. 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 MacLeodA ManitsaI De BritoS 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 Search in Google Scholar