The process of co-design for a new anxiety intervention for autistic children

Added on 14/08/2024

Type de contenu

Journal article of the type Scientific research ( ; english)

Tasha Cullingham, Una Rennard, Cathy Creswell, Damian Milton*, Karen Buckle*, Lucie Godber, Kate Gordon, Michael Larkin, Jonathan Green , The process of co-design for a new anxiety intervention for autistic children published in the journal "JCPP Advances", Preprint, 8 pages , doi:10.1002/jcv2.12255

*Two co-authors are autistics. [Learn more about this mention]

=> Unrestricted access and free

Background: Mental health difficulties are common for autistic people; however, almost no interventions have been co-designed with the autistic community. Co-design has the potential to add important insights from lived experience into intervention design, but there are currently limited examples of how rigorously to undertake this practice. This paper details a worked model of co-design and its process, focussed on adapting an evidenced parent-led intervention for non-autistic child anxiety (HYC), to meet the needs of young autistic children. The aim is to provide an example of co-design, integrating autistic, parental, academic, clinical, experience and expertise.
Methods: Using prior literature and theory, including Experience-Based Co-Design, we developed an iterative and collaborative process between the research team and an expert reference group (ERG). The research team comprised autistic and non-autistic members. The ERG included parents (autistic and non-autistic) of autistic children with anxiety problems, autistic adults with experience of anxiety problems, and clinicians with experience supporting autistic children with anxiety problems. The ERG and research team reviewed information from qualitative research interviews with autistic children with anxiety problems and their parents along with information from clinical experience and the academic literature to reach consensus on the adapted intervention design.
Results: The creation of a truly co-designed intervention that includes a neurodiversity-affirmative perspective, alongside CBT techniques. With anxiety problems experienced by autistic children being framed by combining the impacts of being neurodivergent in a neurotypical world, developmental science and well known cognitive behavioural models of child-anxiety.
Conclusion: Co-design can help to integrate multiple perspectives and result in the creation of interventions that are potentially relevant and acceptable to autistic people, their family members, and clinicians.


For your information:

(1) References in blue are resources listed on our site;

(2) Authors listed in this bibliography whose names are in color have published other resources referenced on the site. Clicking on the name allows you to see the list of resources they have published and shared on the site;

(3) Authors whose names are followed by an asterisk have publicly disclosed being autistic. [Learn more about this mention]


  • R. Bertilsdotter, M. Kourti, D. Jackson-Perry, C. Brownlow, K. Fletcher, D. Bendelman, L. O’Dell (2019). "Doing it differently: Emancipatory autism studies within a neurodiverse academic space". Disability & Society, 34(7–8), doi:10.1080/09687599.2019.1603102

  • T. Brandsen, M. Honingh (2018). "Definitions of Co-production and Co-creation". In Co-Production and Co-Creation.

  • S. Carruthers, A. Pickles, T. Charman, H. McConachie, A. Le Couteur, V. Slonims, P. Howlin, R. Collum, E. Salomone, H. Tobin, I. Gammer, J. Maxwell, C. Aldred, J. Parr, K. Leadbitter, J. Green (2023). "Mediation of 6-year mid-childhood follow-up outcomes after pre-school social communication (PACT) therapy for autistic children: Randomised controlled trial". Journal of Child Psychology and Psychiatry, 65(2), doi:10.1111/jcpp.13798

  • N. Chown*, J. Robinson, L. Beardon, J. Downing, L. Hughes, J. Leatherland, K. Fox, L. Hickman, M. Duncan (2017). "Improving research about us, with us: A draft framework for inclusive autism research". Disability & Society, 32(5), doi:10.1080/09687599.2017.1320273

  • C. Creswell, M. Violato, H. Fairbanks, E. White, M. Parkinson, G. Abitabile, A. Leidi, P. Cooper (2017). "Clinical outcomes and cost-effectiveness of brief guided parent-delivered cognitive behavioural therapy and solution-focused brief therapy for treatment of childhood anxiety disorders: A randomised controlled trial". The Lancet Psychiatry, 4(7), doi:10.1016/s2215-0366(17)30149-9

  • S. Donetto, P. Pierri, V. Tsianakas, G. Robert (2015). "Experience-based Co-design and healthcare improvement: Realizing participatory design in the public sector". The Design Journal, 18(2), doi:10.2752/175630615x14212498964312

  • E. Dyck, G. Russell (2020). "Challenging psychiatric classification: Healthy autistic diversity and the neurodiversity movement". In S. Taylor, A. Brumby (Eds.), Healthy minds in the twentieth century: In and beyond the asylum. Springer International Publishing.

  • M. Farr (2018). "Power dynamics and collaborative mechanisms in Co-production and Co-design processes". Critical Social Policy, 38(4), doi:10.1177/0261018317747444

  • G. Heselton (2021). "Childhood adversity, resilience, and autism: A critical review of the literature". Disability & Society, 38(7), doi:10.1080/09687599.2021.1983416

  • O. Hewitt, P. Langdon, K. Tapp, M. Larkin (2023). "A systematic review and narrative synthesis of inclusive health and social care research with people with intellectual disabilities: How are Co-researchers involved and what are their experiences?". Journal of Applied Research in Intellectual Disabilities: JARID, 36(4), doi:10.1111/jar.13100

  • G. Hickey, S. Brearley, T. Coldham, S. Denegri, G. Green (2018). "Guidance on Co-producing a research project". INVOLVE.

  • C. Hill, T. Reardon, L. Taylor, C. Creswell (2022). "Online support and intervention for child anxiety (OSI): Development and usability testing". JMIR Formative Research, 6(4), doi:10.2196/29846

  • K. Leadbitter, W. Macdonald, C. Taylor, K. Buckle*, J. Green, PACT Consortium (2020). "Parent perceptions of participation in a parent-mediated communication-focused intervention with their young child with autism spectrum disorder". Autism: The International Journal of Research and Practice, 24(8), doi:10.1177/1362361320936394

  • D. Milton* (2018). "Autistic development, trauma and personhood: Beyond the frame of the neoliberal individual". In K. Runswick-Cole, T. Curran, K. Liddiard (Eds.), The Palgrave handbook of disabled children’s childhood studies. Palgrave Macmillan UK.

  • D. Milton*, M. Bracher (2013). "Autistics speak but are they heard". Medical Sociology Online, 7(2), 61–69. (Source)

  • S. Moll, M. Wyndham-West, G. Mulvale, S. Park, A. Buettgen, M. Phoenix, R. Fleisig, E. Bruce (2020). "Are you really doing ‘codesign’? Critical reflections when working with vulnerable populations". BMJ Open, 10(11), doi:10.1136/bmjopen-2020-038339

  • National Institute for Health and Care Excellence (2013). "Autism spectrum disorder in under 19s: Support and management". Clinical guideline [CG170]. (Source)

  • C. Nicolaidis, D. Raymaker*, S. Kapp*, A. Baggs, E. Ashkenazy, K. McDonald, M. Weiner, J. Maslak, M. Hunter, A. Joyce (2019). "The AASPIRE practice-based guidelines for the inclusion of autistic adults in research as Co-researchers and study participants". Autism: The International Journal of Research and Practice, 23(8), doi:10.1177/1362361319830523

  • K. Oliver, A. Kothari, N. Mays (2019). "The dark side of coproduction: Do the costs outweigh the benefits for health research?". Health Research Policy and Systems / BioMed Central, 17(1), doi:10.1186/s12961-019-0432-3

  • V. Palmer, W. Weavell, R. Callander, D. Piper, L. Richard, L. Maher, H. Boyd, H. Herrman, J. Furler, J. Gunn, R. Iedema, G. Robert (2019). "The participatory zeitgeist: An explanatory theoretical model of change in an era of coproduction and codesign in healthcare improvement". Medical Humanities, 45(3), doi:10.1136/medhum-2017-011398

  • A. Pickles, A. Le Couteur, K. Leadbitter, E. Salomone, R. Cole-Fletcher, H. Tobin, I. Gammer, J. Lowry, G. Vamvakas, S. Byford, C. Aldred, V. Slonims, H. McConachie, P. Howlin, J. Parr, T. Charman, J. Green (2016). "Parent mediated social communication therapy for young children with autism (PACT): Long term follow-up of a randomised controlled trial". The Lancet, 388(10059), doi:10.1016/s0140-6736(16)31229-6

  • G. Russell, C. Steer, J. Golding (2011). "Social and demographic factors that influence the diagnosis of autistic spectrum disorders". Social Psychiatry and Psychiatric Epidemiology, 46(12), doi:10.1007/s00127-010-0294-z

  • S. Sharma, A. Hucker, T. Matthews, D. Grohmann, K. Laws (2021). "Cognitive behavioural therapy for anxiety in children and young people on the autism spectrum: A systematic review and meta-analysis". BMC Psychology, 9(1), doi:10.1186/s40359-021-00658-8

  • E. Shephard, R. Bedford, B. Milosavljevic, T. Gliga, E. Jones, A. Pickles, M. Johnson*, T. Charman, BASIS Team (2019). "Early developmental pathways to childhood symptoms of attention-deficit hyperactivity disorder, anxiety and autism spectrum disorder". Journal of Child Psychology and Psychiatry, 60(9), doi:10.1111/jcpp.12947

  • M. Solmi, J. Radua, M. Olivola, E. Croce, L. Soardo, G. Salazar de Pablo, J. I. Shin, P. Kirkbride, P. Jones, J. H. Kim, J. Y. Kim, A. Carvalho, M. Seeman, C. Correll, P. Fusar-Poli (2022). "Age at onset of mental disorders worldwide: Large-scale meta-analysis of 192 epidemiological studies". Molecular Psychiatry, 27(1), doi:10.1038/s41380-021-01161-7

  • D. Spain, F. Happé (2020). "How to optimise cognitive behaviour therapy (CBT) for people with autism spectrum disorders (ASD): A delphi study". Journal of Rational-Emotive and Cognitive-Behavior Therapy: RET, 38(2), doi:10.1007/s10942-019-00335-1

  • E. Stark, D. Ali, A. Ayre, N. Schneider, S. Parveen, K. Marais, N. Holmes, R. Pender (2021). "Coproduction with autistic adults: Reflections from the authentistic research collective". Autism in Adulthood: Challenges and Management, 3(2), doi:10.1089/aut.2020.0050

  • J. Stevenson-Hinde, R. Chicot, A. Shouldice, R. Hinde (2013). "Maternal anxiety, maternal sensitivity, and attachment". Attachment & Human Development, 15(5–6), doi:10.1080/14616734.2013.830387

  • K. Thirlwall, P. Cooper, J. Karalus, M. Voysey, L. Willetts, C. Creswell (2013). "Treatment of child anxiety disorders via guided parent-delivered cognitive-behavioural therapy: Randomised controlled trial". The British Journal of Psychiatry: Journal of Mental Science, 203(6), doi:10.1192/bjp.bp.113.126698

  • R. Vasa, A. Keefer, R. McDonald, M. Hunsche, C. Kerns (2020). "A scoping review of anxiety in young children with autism spectrum disorder". Autism Research: Official Journal of the International Society for Autism Research, 13(12), doi:10.1002/aur.2395

  • J. Wood, P. Kendall, K. Wood, C. Kerns, M. Seltzer, B. Small, A. Lewin, E. Storch (2020). "Cognitive behavioral treatments for anxiety in children with autism spectrum disorder: A randomized clinical trial". JAMA Psychiatry, 77(5), doi:10.1001/jamapsychiatry.2019.4160

  • M. Wood (2021). "CYP-IAPT". The Association for Child and Adolescent Mental Health. (Source)


 
Summarize/Comment on/Translate this reference?