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The powerless or the empowered? Stakeholders’ experiences of diagnosis and treatment for attention-deficit hyperactivity disorder in Ireland

Published online by Cambridge University Press:  20 June 2018

K. Carr-Fanning  and
C. Mc Guckin
K. Carr-Fanning*
Affiliation:
School of Psychological, Social, and Behavioural Sciences, Coventry University, UK School of Education, Trinity College Dublin, Dublin, Ireland
C. Mc Guckin
Affiliation:
School of Education, Trinity College Dublin, Dublin, Ireland
*
*Address for correspondence: K. Carr-Fanning, Faculty of Health and Life Sciences, School of Psychological, Social, and Behavioral Sciences, Coventry University, Priory Street, Coventry CV1 5FB, UK. (Email: [email protected])
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Abstract

Introduction

In Ireland, attention-deficit hyperactivity disorder (ADHD) is the most commonly diagnosed condition in Child and Adolescent Mental Health Services (CAMHS). However, little is known about the experiences of stakeholders affected by ADHD in their pathways through care, especially in Ireland.

Objectives

The aim of this stakeholder voice study was to explore stress and coping among parents and Children and Young People (C/YP) affected by ADHD in an Irish context, in order to contribute to knowledge about what works and what needs to change in practice from a service user perspective.

Methods

In total, 15 C/YP (7–18 years) with ADHD and their parents participated in semi-structured interviews, which were triangulated using other sources (e.g. visual methods), to contribute to a highly contextualised understanding of lived experiences. Transcribed interviews were analysed using a deductive approach to Thematic Analysis informed by a theoretical framework of stress and coping theory and Bronfenbrenner’s bio-ecological model.

Results

Some degree of difficulty in their pathway through care was identified by participants in all case studies. Findings identified barriers to diagnosis, including delays in diagnosis, such as scepticism, stigma, and label avoidance from gatekeepers; poor multiagency working; and misdiagnosis. Once received, diagnosis may serve as an access to empowerment, providing knowledge, understanding, and support. However, C/YP and their parents also reported distressing experiences and a sense of powerlessness within CAMHS and with treatment; such as tensions around medical management, stigma, and a lack of child- and family-centred practice.

Conclusions

Despite the professionals and the systematic supports available, stakeholders did not feel that they were fully understood, listened to, or participants in accessing diagnosis and care planning.

Keywords

ADHDCAMHSchild-centred practicechildren’s voicestakeholders’ experiences
Type
Original Research
Information
Irish Journal of Psychological Medicine , Volume 35 , Special Issue 3: Attention Deficit Hyperactivity Disorder , September 2018 , pp. 203 - 212
Copyright
© College of Psychiatrists of Ireland 2018 

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References

Braun, V, Clarke, V (2006). Using thematic analysis in psychology. Qualitative Research in Psychology 3, 77–101.Google Scholar
Bringewatt, EH (2011). Hidden diagnosis: attention deficit hyperactivity disorder from a child’s perspective. In Sociology of Diagnosis: Advances in Medical Sociology (ed. P. J. McGann and D. J. Hutson), Vol. 12, pp. 259–279. Emerald Group Publishing Limited: Brinley.Google Scholar
Bronfenbrenner, U (2005). Making Human Beings Human: Bio-Ecological Perspectives on Human Development. SAGE: California.Google Scholar
Buckley, S, Devitt, C, Gavin, B, Guerin, S, Noctor, C (2012). Mental Health Services: The Way Forward: The Perspectives of Young People and Parents. St. Patrick’s University Hospital: Dublin.Google Scholar
Bussing, R, Zima, B, Mason, DM, Porter, PC, Garvan, CW (2011). Receiving treatment for attention-deficit hyperactivity disorder: do the perspectives of adolescents matter? Journal of Adolescent Health 49, 7–14. doi: 10.1007/s10826-015-0241-4.Google Scholar
Carr-Fanning, K, Mc Guckin, C (2017). Developing creative methods for children’s voice. In SAGE Cases in Methodology: A Unique Collection of over 500 Case Studies for use in the Teaching of Research Methods (ed. B. Flett), pp. 2–20. SAGE: London.Google Scholar
Clark, S, Carr-Fanning, K, Norris, J (2011). Diagnosis and Treatment of ADHD in Europe, 2nd edn. ADHD Europe: Belgium.Google Scholar
Coolican, H (2004). Research Methods and Statistics in Psychology, 4th edn. Hodder & Stoughton: London.Google Scholar
Cuffe, SP, Visser, SN, Holbrook, JR., Danielson, ML, Geryk, LL, Wolraich, ML, McKeown, RE (2015). ADHD and psychiatric comorbidity functional outcomes in a school-based sample of children. Journal of Attention Disorders 25, 1–10. https://doi.org/10.1177/1087054715613437Google Scholar
Department for Children and Youth Affairs (2015). Better Outcomes, Brighter Futures: The National Policy Framework for Children and Young People 2014-2020. Government Publications: Dublin.Google Scholar
Devers, KJ, Frankel, RM (2000). Study design in qualitative research: sampling and data collection strategies. Education for Health 13, 263–271.Google Scholar
Gallichan, DJ, Curle, C (2008). Fitting square pegs into round holes: the challenge of coping with attention-deficit hyperactivity disorder. Clinical Child Psychology and Psychiatry 13, 343–363.Google Scholar
Gidwani, PP, Opitz, GM, Perrin, JM (2006). Mothers’ views on hyperactivity: a cross-cultural perspective. Developmental and Behavioral Pediatrics 27, 121–126.Google Scholar
Government of Ireland (1999). Children First Act. Government Publications: Dublin.Google Scholar
Government of Ireland (2000). Our Children - Their Lives: The National Children’s Strategy. Stationery Office: Dublin.Google Scholar
Government of Ireland (2003). Data Protection (Amendment) Act. Stationary Office: Dublin.Google Scholar
Government of Ireland (2006). A Vision for Change: Report of the Expert Group on Mental Health Policy. Stationery Office: Dublin.Google Scholar
Government of Ireland (2012). Children’s Bill. Stationery Office: Dublin.Google Scholar
Health Service Executive (HSE) (2014). Fifth Annual Child & Adolescent Mental Health Service Report 2012-2013. HSE: Naas.Google Scholar
Hughes, L (2007). The reality of living with AD/HD: children’s concern about educational and medical support. Emotional and Behavioural Difficulties 12, 69–80.Google Scholar
Kavanagh, G, O’Hanrahan, S, Hughes, G, McNicholas, F (2015). Review of clinical guidelines for children and adolescents with attention deficit hyperactivity disorder and their application to an Irish context. Irish Journal of Psychological Medicine 32, 283–293.Google Scholar
Kildea, S, Wright, J, Davies, J (2011). Making sense of ADHD in practice: a stakeholder review. Clinical Child Psychology and Psychiatry 16, 599–619.Google Scholar
Kilkelly, U (2007). Barriers to the Realization of Children’s Rights in Ireland. Ombudsman for Children: Ireland.Google Scholar
Klasen, H (2000). A name, what's in a name? The medicalization of hyperactivity, revisited. Harvard Review of Psychiatry 7, 334–344.Google Scholar
Kvale, S (1996). Interviews: An Introduction to Qualitative Research Interviewing. SAGE: Thousand Oaks, CA.Google Scholar
Lazarus, RS (1999). Stress and Emotion: A New Synthesis. Springer: New York.Google Scholar
Leggett, C, Hotham, E (2011). Treatment experiences of children and adolescents with attention‐deficit/hyperactivity disorder. Journal of Paediatrics and Child Health 47, 512–517.Google Scholar
McIntyre, R (2012). It’s not something to be ashamed of: multiple perspectives and experiences of childhood ADHD. PhD, University College Dublin: Dublin.Google Scholar
Melvin, MM (editor) (2003). Program evaluation. In The Handbook of Psychology: Research Methods in Psychology (ed. I. B. Weiner, J. A. Schinka and W. F. Velicer), Vol. 2, pp. 323–348. John Wiley & Sons: NJ.Google Scholar
Miles, MB, Huberman, AM (1994). Qualitative Data Analysis: An Expanded Sourcebook, 2nd edn. SAGE Publications: Thousand Oaks, CA.Google Scholar
Multisite Multimodal Treatment Study of Children with ADHD (MTA) Cooperative Group (1999). A 14-month randomized clinical trial of treatment strategies for attention deficit/hyperactivity disorder. Archives of General Psychiatry 56, 1073–1086.Google Scholar
National Institute for Health and Clinical Excellence (NICE) (2008). Attention Deficit Hyperactivity Disorder (ADHD): Clinical Guidelines (72). (https://www.nice.org.uk/guidance/cg72). Accessed 12 June 2016.Google Scholar
Prosser, J, Burke, C (2008). Image-based educational research: childlike perspectives. In The Handbook of the Arts in Qualitative Research: Perspectives, Methodologies, Examples and Issues (ed. J. G. Knowles and A. L. Cole), pp. 407–419, SAGE: London.Google Scholar
Sayal, K, Ford, T, Goodman, R (2010). Trends in recognition of and service use for attention-deficit/ hyperactivity disorder in Britain, 1999–2004. Psychiatric Services 61, 803–810.Google Scholar
Shevlin, M, Kearns, H, Ranaghan, M, Twomey, M, Smith, R, Winter, E (2009). Creating Inclusive Learning Environments in Irish Schools: Teachers Perspectives. National Council for Special Education: Ireland.Google Scholar
Singh, I (2004). Doing their jobs: mothering with Ritalin in a culture of mother-blame. Social Science & Medicine 59, 1193–1205.Google Scholar
Singh, I (2005). Will the ‘real’ boy please behave: dosing dilemmas for parents of boys with ADHD. American Journal of Bioethics 5, 34–47.Google Scholar
Singh, I (2007). Clinical implications of ethical concepts: moral self-understandings in children taking methylphenidate for ADHD. Clinical Child Psychology and Psychiatry 12, 167–182.Google Scholar
Singh, I (2012). VOICES study: final report (http://www.adhdvoices.com/documents/VoicesReport2012.pdf). Accessed 12 August 2016.Google Scholar
Singh, I (2013 a). Brain-talk: power and negotiation in children’s discourse about self, brain and behaviour. Sociology of Health and Illness 35, 813–827.Google Scholar
Singh, I (2013 b). Not robots: children’s perspectives on authenticity, moral agency and stimulant drug treatments. Journal of Medical Ethics 39, 359–366.Google Scholar
Stake, RE (2006). Multiple Case Study Analysis. Guildford Press: New York.Google Scholar
Timimi, S, Taylor, E (2004). ADHD is best understood as a cultural construct. The British Journal of Psychiatry 184, 8–9.Google Scholar
Travell, C, Visser, J (2006). ‘ADHD does bad stuff to you’: young people’s and parents experiences and perceptions of attention deficit hyperactivity disorder (ADHD). Emotional and Behavioural Difficulties 11, 205–216.Google Scholar
United Nations Convention on the Rights of the Child (1989). UNCRC. UNICEF: London..Google Scholar
Vaughn, S, Fuchs, LS (2003). Redefining learning disabilities as inadequate response to intervention: the promise and potential problems. Learning Disabilities Research and Practice 18, 137–146.Google Scholar
Watson, D, Maître, B (2014). Emotional, Psychological and Mental Health Disability. National Disability Authority: Dublin.Google Scholar
Wright, N, Moldavsky, M, Schneider, J, Chakrabarti, I, Coates, J, Daley, D, Kochhar, P, Mills, J, Sorour, W, Sayal, K (2015). Pathways to care for ADHD - a systematic review of barriers and facilitators. Journal of Child Psychology and Psychiatry 56, 598–617.Google Scholar
Young, S, Fitzgerald, M, Postma, MJ (2013). ADHD making the invisible visible: an expert White Paper on attention-deficit hyperactivity disorder (ADHD): policy solutions to address the societal impact, costs and long-term outcomes, in support of affected individuals (http://www.europeanbraincouncil.org/pdfs/ADHD%20White%20Paper_15Apr13.pdf). Accessed 12 May 2016.Google Scholar