Le processus de co-conception d'une nouvelle intervention contre l'anxiete pour les enfants autistes

Titre original en anglais : The process of co‐design for a new anxiety intervention for autistic children

Sources de métadonnées utilisées pour cette référence

OpenAlex Crossref
En savoir plus sur les sources utilisées

Cullingham, T., Rennard, U., Creswell, C., Milton, D., Buckle, K. L., Godber, L., Gordon, K., Larkin, M., & Green, J. (2024). The process of co‐design for a new anxiety intervention for autistic children. JCPP Advances, 5(2), e12255-e12255. https://doi.org/10.1002/jcv2.12255

Date de publication: 13/08/2024 Ajout dans AutiHub: 05/07/2026 Type: Article Langue de l’article: Anglais
Source OpenAlex Source éditeur (DOI) Texte intégral

Cette publication est intégrée dans AutiHub via :

Auteurs

Auteur·ices des publications
9
Auteur·ices de la publication identifié·es comme autistes
2 / 9 (22,2 %)
  1. Tasha Cullingham
  2. Una Rennard
  3. Cathy Creswell
  4. Damian Milton *
  5. Karen Leneh Buckle *
  1. Lucie Godber
  2. Kate Gordon
  3. Michael Larkin
  4. Jonathan Green

Résumé

Contexte : Les difficultes de sante mentale sont frequentes chez les personnes autistes ; cependant, presque aucune intervention n'a ete co-concue avec la communaute autiste. La co-conception a le potentiel d'ajouter des eclairages importants issus de l'experience vecue a la conception des interventions, mais il existe actuellement peu d'exemples de la maniere de mettre rigoureusement en oeuvre cette pratique. Cet article detaille un modele applique de co-conception et son processus, axe sur l'adaptation d'une intervention fondee sur des preuves, dirigee par les parents, pour l'anxiete chez les enfants non autistes (HYC), afin de repondre aux besoins de jeunes enfants autistes. L'objectif est de fournir un exemple de co-conception, integrant l'experience et l'expertise autistes, parentales, universitaires et cliniques. Methodes : En utilisant la litterature et la theorie anterieures, y compris l'Experience-Based Co-Design, nous avons developpe un processus iteratif et collaboratif entre l'equipe de recherche et un groupe de reference d'experts (ERG). L'equipe de recherche comprenait des membres autistes et non autistes. L'ERG incluait des parents (autistes et non autistes) d'enfants autistes ayant des problemes d'anxiete, des adultes autistes ayant l'experience de problemes d'anxiete, et des cliniciens ayant l'experience du soutien aux enfants autistes ayant des problemes d'anxiete. L'ERG et l'equipe de recherche ont examine des informations provenant d'entretiens de recherche qualitative avec des enfants autistes ayant des problemes d'anxiete et leurs parents, ainsi que des informations provenant de l'experience clinique et de la litterature universitaire, afin d'atteindre un consensus sur la conception de l'intervention adaptee. Resultats : La creation d'une intervention veritablement co-concue qui inclut une perspective affirmative de la neurodiversite, parallelement a des techniques de TCC. Les problemes d'anxiete vecus par les enfants autistes sont cadres en combinant les effets du fait d'etre neurodivergent dans un monde neurotypique, la science du developpement et des modeles cognitivo-comportementaux bien connus de l'anxiete chez l'enfant. Conclusion : La co-conception peut aider a integrer de multiples perspectives et aboutir a la creation d'interventions potentiellement pertinentes et acceptables pour les personnes autistes, les membres de leur famille et les cliniciens.

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.

Bibliographie citée par cette référence

Les références citées sont importées depuis des sources externes de métadonnées lorsqu’elles sont disponibles. La liste peut être partielle.

Vue d’ensemble de l’inclusion dans la bibliographie

Ces indicateurs décrivent la bibliographie citée importée pour cette publication. Les métriques de références citées utilisent le total des références citées comme dénominateur. Les métriques d’auteurices cité·es indiquent si elles utilisent toutes les occurrences d’auteurices cité·es ou seulement les occurrences rattachées à des auteurices déjà intégré·es à la base de données AutiHub. Ils utilisent les rattachements mis en cache entre les auteurices cité·es et les auteurices intégré·es à la base de données AutiHub. Dernier calcul : 16/08/2026 11:30.

Références citées
36
Nombre total de références citées intégrées pour cette publication.
Références citées avec un·e auteur·ice identifié·e comme autiste
9 / 36 (25,0 %)
Occurrences d’auteur·ices cité·es identifié·es comme autistes
21 / 206 (10,2 %)
Parmi les occurrences rattachées à des auteurices intégré·es à la base de données AutiHub : 21 / 94 (22,3 %). Auteurices cité·es distinct·es identifié·es comme autistes : 17 / 178 (9,6 %).
Occurrences citées rattachées à la base AutiHub
94 / 206 (45,6 %)
Auteurices cité·es distinct·es rattaché·es : 72 / 178 (40,4 %)
Occurrences rattachées, non identifiées comme autistes
73 / 94 (77,7 %)
Parmi les seules occurrences rattachées. Sur l’ensemble des occurrences d’auteurices cité·es : 73 / 206 (35,4 %). Auteurices cité·es distinct·es rattaché·es, non identifié·es comme autistes : 55 / 72 (76,4 %).
  1. Ginny Russell , Colin Steer , Jean Golding (2011). Social and demographic factors that influence the diagnosis of autistic spectrum disorders . Social Psychiatry and Psychiatric Epidemiology, 46(12), 1283-1293. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s00127-010-0294-z OpenAlex: https://openalex.org/W2033129979
    Crossref OpenAlex
  3. Sara Donetto , Paola Pierri , Vicki Tsianakas , Glenn Robert (2015). Experience-based Co-design and Healthcare Improvement: Realizing Participatory Design in the Public Sector . The Design Journal, 18(2), 227-248. Informa UK Limited.
    Type: Article DOI: 10.2752/175630615x14212498964312 OpenAlex: https://openalex.org/W2095169304
    Crossref OpenAlex
  4. Donald M. Berwick (2016). Era 3 for Medicine and Health Care . JAMA, 315(13), 1329. American Medical Association (AMA).
    Type: Article DOI: 10.1001/jama.2016.1509 OpenAlex: https://openalex.org/W2292646496
    Crossref OpenAlex
  5. Joan Stevenson-Hinde , Rebecca Chicot , Anne Shouldice , Camilla A. Hinde (2013). Maternal anxiety, maternal sensitivity, and attachment . Attachment & Human Development, 15(5-6), 618-636. Informa UK Limited.
    Type: Article DOI: 10.1080/14616734.2013.830387 OpenAlex: https://openalex.org/W2119714871
    Crossref OpenAlex
  6. Taco Brandsen , Trui Steen , Bram Verschuere (2018). Co-Production and Co-Creation . Routledge.
    Type: Livre DOI: 10.4324/9781315204956 OpenAlex: https://openalex.org/W2785413673
    Crossref OpenAlex
  7. Kerstin Thirlwall , Peter J. Cooper , Jessica Karalus , Merryn Voysey , Lucy Willetts , Cathy Creswell (2013). Treatment of child anxiety disorders via guided parent-delivered cognitive–behavioural therapy: Randomised controlled trial . British Journal of Psychiatry, 203(6), 436-444. Royal College of Psychiatrists.
    Type: Article DOI: 10.1192/bjp.bp.113.126698 OpenAlex: https://openalex.org/W2140303763
    Crossref OpenAlex
  8. Sophie Carruthers , Andrew Pickles , Tony Charman , Helen McConachie , Ann Le Couteur , Vicky Slonims et al. (2024). 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), 233-244. Wiley.
    Type: Article DOI: 10.1111/jcpp.13798 OpenAlex: https://openalex.org/W4366990219
    Crossref OpenAlex
  10. Damian Milton * , Michael Bracher (2013). Autistics speak but are they heard . Medical Sociology, 7(2), 61.
    Type: Article OpenAlex: https://openalex.org/W2337764906
    Crossref OpenAlex
  11. Cathy Creswell , Mara Violato , Hannah Fairbanks , Elizabeth White , Monika Parkinson , Gemma Abitabile et al. (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), 529-539. Elsevier BV.
    Type: Article DOI: 10.1016/s2215-0366(17)30149-9 OpenAlex: https://openalex.org/W2615820797
    Crossref OpenAlex
  12. Andrew Pickles , Ann Le Couteur , Kathy Leadbitter , Erica Salomone , Rachel Cole-Fletcher , Hannah Tobin et al. (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), 2501-2509. Elsevier BV.
    Type: Article DOI: 10.1016/s0140-6736(16)31229-6 OpenAlex: https://openalex.org/W2537346844
    Crossref OpenAlex
  13. Erika Dyck , Ginny Russell (2020). Challenging Psychiatric Classification: Healthy Autistic Diversity and the Neurodiversity Movement . Dans Mental Health in Historical Perspective (pp. 167-187). Springer International Publishing.
    Type: Chapitre de livre DOI: 10.1007/978-3-030-27275-3_8 OpenAlex: https://openalex.org/W2974346434
    Crossref OpenAlex
  14. Michelle Farr (2018). Power dynamics and collaborative mechanisms in co-production and co-design processes . Critical Social Policy, 38(4), 623-644. SAGE Publications.
    Type: Article DOI: 10.1177/0261018317747444 OpenAlex: https://openalex.org/W2771768155
    Crossref OpenAlex
  15. Damian Milton * (2018). Autistic Development, Trauma and Personhood: Beyond the Frame of the Neoliberal Individual . Dans The Palgrave Handbook of Disabled Children’s Childhood Studies (pp. 461-476). Palgrave Macmillan UK.
    Type: Chapitre de livre DOI: 10.1057/978-1-137-54446-9_29 OpenAlex: https://openalex.org/W2767958451
    AutiHub · Chercheur·euses autistes Crossref OpenAlex
  18. Gabrielle A. Heselton (2023). Childhood adversity, resilience, and autism: a critical review of the literature . Disability & Society, 38(7), 1251-1270. Informa UK Limited.
    Type: Article DOI: 10.1080/09687599.2021.1983416 OpenAlex: https://openalex.org/W3206474732
    Crossref OpenAlex
  19. Olivia Hewitt , Peter E. Langdon , Katherine Tapp , Michael 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, 36(4), 681-701. Wiley.
    Type: Article DOI: 10.1111/jar.13100 OpenAlex: https://openalex.org/W4362453177
    Crossref OpenAlex
  20. Elizabeth Shephard , Rachael Bedford , Bosiljka Milosavljevic , Teodora Gliga , Emily J.H. Jones , Andrew Pickles et al. (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), 963-974. Wiley.
    Type: Article DOI: 10.1111/jcpp.12947 OpenAlex: https://openalex.org/W2810180159
    Crossref OpenAlex
  21. Hickey G. (2018). Guidance on Co‐producing a research project . Guidance on co-producing a research project.
    Type: Autre
    Crossref
  23. Claire Hill , Tessa Reardon , Lucy Taylor , Cathy Creswell (2022). Online Support and Intervention for Child Anxiety (OSI): Development and Usability Testing . JMIR Formative Research, 6(4), e29846. JMIR Publications Inc..
    Type: Article DOI: 10.2196/29846 OpenAlex: https://openalex.org/W4223487014
    Crossref OpenAlex
  24. Kathryn Oliver , Anita Kothari , Nicholas Mays (2019). The dark side of coproduction: do the costs outweigh the benefits for health research? Health Research Policy and Systems, 17(1), 33. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1186/s12961-019-0432-3 OpenAlex: https://openalex.org/W2925672674
    Crossref OpenAlex
  28. Jeffrey J. Wood , Philip C. Kendall , Karen S. Wood , Connor M. Kerns , Michael Seltzer , Brent J. Small et al. (2020). Cognitive Behavioral Treatments for Anxiety in Children With Autism Spectrum Disorder . JAMA Psychiatry, 77(5), 474. American Medical Association (AMA).
    Type: Article DOI: 10.1001/jamapsychiatry.2019.4160 OpenAlex: https://openalex.org/W2989651886
    Crossref OpenAlex
  29. Sandra Moll , Michelle Wyndham-West , Gillian Mulvale , Sean Park , Alexis Buettgen , Michelle Phoenix et al. (2020). Are you really doing ‘codesign’? Critical reflections when working with vulnerable populations . BMJ Open, 10(11), e038339. BMJ.
    Type: Article DOI: 10.1136/bmjopen-2020-038339 OpenAlex: https://openalex.org/W3094844007
    Crossref OpenAlex
  30. Debbie Spain , Francesca Happé (2020). How to Optimise Cognitive Behaviour Therapy (CBT) for People with Autism Spectrum Disorders (ASD): A Delphi Study . Journal of Rational-Emotive & Cognitive-Behavior Therapy, 38(2), 184-208. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10942-019-00335-1 OpenAlex: https://openalex.org/W2996582381
    Crossref OpenAlex
  31. National Institute for Health , Care Excellence (2013). Autism spectrum disorder in under 19s: Support and management . Autism spectrum disorder in under 19s: Support and management.
    Type: Autre
    Crossref
  32. Roma A. Vasa , Amy Keefer , Rachel G. McDonald , Michelle C. Hunsche , Connor M. Kerns (2020). A Scoping Review of Anxiety in Young Children with Autism Spectrum Disorder . Autism Research, 13(12), 2038-2057. Wiley.
    Type: Article DOI: 10.1002/aur.2395 OpenAlex: https://openalex.org/W3088049075
    Crossref OpenAlex
  33. Eloise Stark , Dorota Ali , Annalise Ayre , Naomi Schneider , Sophia Parveen , Keith Marais et al. (2021). Coproduction with Autistic Adults: Reflections from the Authentistic Research Collective . Autism in Adulthood, 3(2), 195-203. SAGE Publications.
    Type: Article DOI: 10.1089/aut.2020.0050 OpenAlex: https://openalex.org/W3112143438
    Crossref OpenAlex
  34. Shivani Sharma , Abigail Hucker , Terry Matthews , Dominique Grohmann , Keith R. 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), 151-151. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1186/s40359-021-00658-8 OpenAlex: https://openalex.org/W3202426903
    Crossref OpenAlex
  35. Marco Solmi , Joaquim Radua , Miriam Olivola , Enrico Croce , Livia Soardo , Gonzalo Salazar de Pablo et al. (2022). Age at onset of mental disorders worldwide: large-scale meta-analysis of 192 epidemiological studies . Molecular Psychiatry, 27(1), 281-295. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1038/s41380-021-01161-7 OpenAlex: https://openalex.org/W3164324796
    Crossref OpenAlex
  36. Wood M. (2021). CYP‐IAPT . CYP‐IAPT.
    Type: Autre
    Crossref