Cocréer une ressource canadienne de littératie en santé mentale sur l'autisme : une analyse qualitative des perspectives des conseillers

Titre original en anglais : Co-creating a Canadian autism mental health literacy resource: a qualitative analysis of advisory perspectives

Cette publication est incluse dans le projet « Contributions académiques de personnes autistes sur l’autisme ». un auteur·ice de cette publication est identifié·e comme autiste dans le projet.

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Weiss, J. A., Modica, P. T., Gallant, C., Roudbarani, F., Weaver, C., Bouma, A., Goldsmith, L., Leef, J., & Lunsky, Y. (2025). Co-creating a Canadian autism mental health literacy resource: a qualitative analysis of advisory perspectives. Health Research Policy and Systems, 23(1), 140-140. https://doi.org/10.1186/s12961-025-01403-y

Publication date: 23/10/2025 Ajout dans AutiHub: 09/09/2026 Type: Article Langue de l’article: Anglais
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Auteurs

Auteur·ices des publications
9
Auteur·ices de la publication identifié·es comme autistes
1 / 9 (11,1 %)
  1. Jonathan A. Weiss
  2. Paula Tablon Modica
  3. Caitlyn Gallant
  4. Flora Roudbarani
  5. Courtney Weaver
  1. Aaron Bouma *
  2. Lianne Goldsmith
  3. Jonathan Leef
  4. Yona Lunsky

Résumé

CONTEXTE : Les adultes autistes connaissent des taux disproportionnellement élevés de difficultés de santé mentale et rencontrent d'importants obstacles aux soins. Bien que les initiatives visant à améliorer la littératie en santé mentale (MHL) constituent une stratégie pour remédier à ces disparités, les processus par lesquels de telles initiatives sont coproduites avec des adultes autistes et des proches aidants restent peu étudiés. La coproduction - le développement collaboratif de ressources ou de connaissances entre des chercheurs et des membres de la communauté - peut renforcer la pertinence, l'authenticité et l'impact des initiatives de santé. L'objectif principal de cette étude était de comprendre comment les adultes autistes et les proches aidants ont vécu leur participation à la coproduction d'une initiative de recherche appliquée en santé. Afin d'éclairer les futures initiatives, il est nécessaire de comprendre l'expérience des parties prenantes concernant le processus de coproduction. MÉTHODES : Cette étude a examiné l'expérience des parties prenantes engagées dans la coproduction d'une ressource canadienne de MHL destinée aux adultes autistes et à leurs familles. Bien que le contexte du projet ait porté sur la MHL, l'objectif principal était de comprendre comment les adultes autistes et les proches aidants ont vécu leur participation au processus de coproduction. Des entretiens semi-structurés ont été menés auprès de 24 adultes autistes et proches aidants qui ont agi comme conseillers dans le cadre du Autism Mental Health Literacy Project (AM-HeLP). Une approche d'analyse thématique réflexive a été utilisée pour identifier les principaux thèmes expérientiels liés à leur participation. RÉSULTATS : Une analyse thématique a identifié quatre thèmes principaux relatifs à l'expérience des parties prenantes : (1) les éléments de la coproduction, (2) le processus de collaboration, (3) les enseignements tirés et (4) l'impact émotionnel de la participation. CONCLUSIONS : Ces résultats soulignent l'importance cruciale de pratiques de coproduction intentionnelles, inclusives et tenant compte des traumatismes dans la recherche appliquée en santé. Ils offrent des orientations pratiques aux chercheurs, aux prestataires de services et aux décideurs politiques qui cherchent à impliquer authentiquement les adultes autistes et les familles dans l'élaboration de ressources liées à la santé. Le soutien de partenariats équitables avec les adultes autistes et les proches aidants est essentiel pour faire progresser des politiques et des pratiques de santé réactives et centrées sur la personne.

BACKGROUND: Autistic adults experience disproportionately high rates of mental health challenges and encounter substantial barriers to care. While initiatives aimed at improving mental health literacy (MHL) offer one strategy for addressing these disparities, the processes through which such initiatives are co-produced with autistic adults and caregivers remain underexplored. Co-production - the collaborative development of resources or knowledge between researchers and community members - can enhance the relevance, authenticity, and impact of health initiatives. The central aim of this study was to understand how autistic adults and caregivers experienced their involvement in the co-production of an applied health research initiative. To inform future initiatives, there is a need to understand stakeholder experiences of the co-production process. METHODS: This study examined the experiences of stakeholders engaged in the co-production of a Canadian MHL resource for autistic adults and their families. Although the context of the project focused on MHL, the central aim was to understand how autistic adults and caregivers experienced their involvement in the co-production process. Semi-structured interviews were conducted with 24 autistic adults and caregivers who served as advisors in the Autism Mental Health Literacy Project (AM-HeLP). A reflexive thematic analysis approach was used to identify key experiential themes related to their involvement. RESULTS: A thematic analysis identified four main stakeholder experience themes: (1) the elements of co-production, (2) the collaboration process, (3) insights gained and (4) emotional impact of involvement. CONCLUSIONS: These findings highlight the critical importance of intentional, inclusive and trauma-informed co-production practices in applied health research. They offer practical guidance for researchers, service providers and policymakers seeking to authentically engage autistic adults and families in the development of health-related resources. Supporting equitable partnerships with autistic adults and caregivers is essential to advancing responsive and person-centred health policy and practice.

Bibliographie citée par cette référence

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Vue d’ensemble de la bibliographie citée

Ces indicateurs décrivent la bibliographie citée par cette publication. Un nom d’auteurice est compté chaque fois qu’il apparaît dans une référence citée : une même personne peut donc être comptée plusieurs fois. Les noms qui ne sont pas encore associés à un·e auteurice déjà présent·e dans AutiHub sont traités comme inconnus, pas comme non autistes. Dernier calcul : 13/09/2026 01:05.

Références citées
72
Avec un DOI
63
Sans DOI, à partir du texte brut de la bibliographie
9
7 / 72 (9,7 %) références citées comprennent au moins une personne identifiée comme autiste.
Références avec données à compléter
9 / 72 (12,5 %)
Références avec noms d’auteurices détectés
66 / 72 (91,7 %)
Sans nom d’auteurice détecté
6
Sans titre structuré
9
Sans identifiant stable
9
Références avec noms bruts d’auteurices restant à vérifier
6
Références avec problème de récupération des métadonnées externes
0
Ces indicateurs portent sur les références citées affichées sur cette page, après fusion des doublons techniques. Une référence sans DOI peut quand même soutenir les statistiques d’auteurices lorsqu’un titre et des noms d’auteurices sont disponibles.
Noms d’auteurices détectés dans la bibliographie citée
337
À partir du DOI ou de métadonnées externes
337
À partir du texte brut validé de la bibliographie
0
Noms bruts déjà validés
0
Noms bruts restant à vérifier
10
131 / 337 (38,9 %) noms sont associés à un·e auteurice déjà présent·e dans AutiHub. 206 / 337 (61,1 %) noms ne sont pas encore associés.
Noms associés à une personne identifiée comme autiste
25 / 337 (7,4 %)
Calculé sur l’ensemble des noms d’auteurices détectés dans la bibliographie citée. Parmi les noms associés à un·e auteurice déjà présent·e dans AutiHub : 25 / 131 (19,1 %). Personnes distinctes identifiées comme autistes : 23 / 308 (7,5 %).
  1. Anthony F Jorm , Ailsa E Korten , Patricia A Jacomb , Helen Christensen , Bryan Rodgers , Penelope Pollitt (1997). “Mental health literacy”: a survey of the public's ability to recognise mental disorders and their beliefs about the effectiveness of treatment . Medical Journal of Australia, 166(4), 182-186. Wiley.
    Type: Article DOI: 10.5694/j.1326-5377.1997.tb140071.x OpenAlex: https://openalex.org/W1206579674
    Crossref OpenAlex OpenCitations
  2. Lisa A. Croen , Ousseny Zerbo , Yinge Qian , Maria L Massolo , Steve Rich , Stephen Sidney et al. (2015). The health status of adults on the autism spectrum . Autism, 19(7), 814-823. SAGE Publications.
    Type: Article DOI: 10.1177/1362361315577517 OpenAlex: https://openalex.org/W2108322879
    Crossref OpenAlex OpenCitations
  3. Erin Stack , Katherine McDonald (2014). Nothing About Us Without Us: Does Action Research in Developmental Disabilities Research Measure Up? Journal of Policy and Practice in Intellectual Disabilities, 11(2), 83-91. Wiley.
    Type: Article DOI: 10.1111/jppi.12074 OpenAlex: https://openalex.org/W1558824088
    Crossref OpenAlex OpenCitations
  4. Anne G. Lever , Hilde M. Geurts (2016). Psychiatric Co-occurring Symptoms and Disorders in Young, Middle-Aged, and Older Adults with Autism Spectrum Disorder . Journal of Autism and Developmental Disorders, 46(6), 1916-1930. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-016-2722-8 OpenAlex: https://openalex.org/W2272786625
    Crossref OpenAlex OpenCitations
  5. Brenna B. Maddox , Samantha Crabbe , Rinad S Beidas , Lauren Brookman-Frazee , Carolyn C Cannuscio , Judith S. Miller et al. (2020). “I wouldn’t know where to start”: Perspectives from clinicians, agency leaders, and autistic adults on improving community mental health services for autistic adults . Autism, 24(4), 919-930. SAGE Publications.
    Type: Article DOI: 10.1177/1362361319882227 OpenAlex: https://openalex.org/W2988923336
    Crossref OpenAlex OpenCitations
  6. Philippa Moss , Patricia Howlin , Sarah Savage , Patrick Bolton , Michael Rutter (2015). Self and informant reports of mental health difficulties among adults with autism findings from a long-term follow-up study . Autism, 19(7), 832-841. SAGE Publications.
    Type: Article DOI: 10.1177/1362361315585916 OpenAlex: https://openalex.org/W1957385389
    Crossref OpenAlex OpenCitations
  7. Ailsa Russell , Clodagh M Murphy , Ellie Wilson , Nicola Gillan , Cordelia Brown , Dene M Robertson et al. (2016). The mental health of individuals referred for assessment of autism spectrum disorder in adulthood: A clinic report . Autism, 20(5), 623-627. SAGE Publications.
    Type: Article DOI: 10.1177/1362361315604271 OpenAlex: https://openalex.org/W2255438920
    Crossref OpenAlex OpenCitations
  8. Connor Tom Keating (2021). Participatory Autism Research: How Consultation Benefits Everyone . Frontiers in Psychology, 12, 713982-713982. Frontiers Media SA.
    Type: Article DOI: 10.3389/fpsyg.2021.713982 OpenAlex: https://openalex.org/W3193937630
    Crossref OpenAlex OpenCitations
  9. Odette Parry , Carolyn Thompson , Gerry Fowkes (1999). Life Course Data Collection: Qualitative Interviewing using the Life Grid . Sociological Research Online, 4(2), 102-112. SAGE Publications.
    Type: Article DOI: 10.5153/sro.233 OpenAlex: https://openalex.org/W1979229993
    Crossref OpenAlex OpenCitations
  10. Brenna B. Maddox , Samantha R. Crabbe , Jessica M. Fishman , Rinad S. Beidas , Lauren Brookman-Frazee , Judith S. Miller et al. (2019). Factors Influencing the Use of Cognitive–Behavioral Therapy with Autistic Adults: A Survey of Community Mental Health Clinicians . Journal of Autism and Developmental Disorders, 49(11), 4421-4428. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-019-04156-0 OpenAlex: https://openalex.org/W2965006136
    Crossref OpenAlex OpenCitations
  11. Gillian Mulvale , Glenn Robert (2021). Special Issue- Engaging Vulnerable Populations in the Co-Production of Public Services . International Journal of Public Administration, 44(9), 711-714. Informa UK Limited.
    Type: Article DOI: 10.1080/01900692.2021.1921941 OpenAlex: https://openalex.org/W3160889100
    Crossref OpenAlex OpenCitations
  12. Lauren K. Collogan , Farris Tuma , Regina Dolan‐Sewell , Susan Borja , Alan R. Fleischman (2004). Ethical issues pertaining to research in the aftermath of disaster . Journal of Traumatic Stress, 17(5), 363-372. Wiley.
    Type: Article DOI: 10.1023/b:jots.0000048949.43570.6a OpenAlex: https://openalex.org/W2002703888
    Crossref OpenAlex OpenCitations
  14. Jonathan A. Weiss , Yona Lunsky (2010). Service Utilization Patterns in Parents of Youth and Adults With Intellectual Disability Who Experienced Behavioral Crisis . Journal of Mental Health Research in Intellectual Disabilities, 3(3), 145-163. Informa UK Limited.
    Type: Article DOI: 10.1080/19315864.2010.490617 OpenAlex: https://openalex.org/W2038620934
    Crossref OpenAlex OpenCitations
  15. Julie Taylor , Natalie A Henninger , Marsha R Mailick (2015). Longitudinal patterns of employment and postsecondary education for adults with autism and average-range IQ . Autism, 19(7), 785-793. SAGE Publications.
    Type: Article DOI: 10.1177/1362361315585643 OpenAlex: https://openalex.org/W2184206567
    Crossref OpenAlex OpenCitations
  16. Kristin Z. Black , Christina Hardy , Molly De Marco , Alice S. Ammerman , Giselle Corbie‐Smith , Barbara Council et al. (2013). Beyond Incentives for Involvement to Compensation for Consultants: Increasing Equity in CBPR Approaches . Progress in Community Health Partnerships: Research, Education, and Action, 7(3), 263-270. Project MUSE.
    Type: Article DOI: 10.1353/cpr.2013.0040 OpenAlex: https://openalex.org/W2039957878
    AutiHub · Centre de documentation Crossref OpenAlex OpenCitations
  17. Jonathan A. Weiss , Michelle A. Fardella (2018). Victimization and Perpetration Experiences of Adults With Autism . Frontiers in Psychiatry, 9, 203. Frontiers Media SA.
    Type: Article DOI: 10.3389/fpsyt.2018.00203 OpenAlex: https://openalex.org/W2802963031
    Crossref OpenAlex OpenCitations
  18. Lynette Sikic Micanovic , Stephanie Stelko , Suzana Sakic (2019). Who else Needs Protection? Reflecting on Researcher Vulnerability in Sensitive Research . Societies, 10(1), 3. MDPI AG.
    Type: Article DOI: 10.3390/soc10010003 OpenAlex: https://openalex.org/W2994810951
    Crossref OpenAlex OpenCitations
  20. Sarah Cassidy , K. Gould , E. Townsend , Mirabel Pelton , Ashley Robertson , Jacqui Rodgers (2020). Is Camouflaging Autistic Traits Associated with Suicidal Thoughts and Behaviours? Expanding the Interpersonal Psychological Theory of Suicide in an Undergraduate Student Sample . Journal of Autism and Developmental Disorders, 50(10), 3638-3648. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-019-04323-3 OpenAlex: https://openalex.org/W2993272702
    Crossref OpenAlex OpenCitations
  21. Nicolas Rüsch , Sara E. Evans-Lacko , Claire Henderson , Clare Flach , Graham Thornicroft (2011). Knowledge and Attitudes as Predictors of Intentions to Seek Help for and Disclose a Mental Illness . Psychiatric Services, 62(6), 675-678. American Psychiatric Association Publishing.
    Type: Article DOI: 10.1176/ps.62.6.pss6206_0675 OpenAlex: https://openalex.org/W2087278229
    Crossref OpenAlex OpenCitations
  22. Doha Bemmouna , Romain Coutelle , Sébastien Weibel , Luisa Weiner (2022). Feasibility, Acceptability and Preliminary Efficacy of Dialectical Behavior Therapy for Autistic Adults without Intellectual Disability: A Mixed Methods Study . Journal of Autism and Developmental Disorders, 52(10), 4337-4354. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-021-05317-w OpenAlex: https://openalex.org/W3202632530
    Crossref OpenAlex OpenCitations
  23. Claire Henderson , Sara Evans-Lacko , Graham Thornicroft (2013). Mental Illness Stigma, Help Seeking, and Public Health Programs . American Journal of Public Health, 103(5), 777-780. American Public Health Association.
    Type: Article DOI: 10.2105/ajph.2012.301056 OpenAlex: https://openalex.org/W2153625321
    Crossref OpenAlex OpenCitations
  24. Ruth Northway , Joyce Howarth , Lynne Evans (2015). Participatory research, people with intellectual disabilities and ethical approval: making reasonable adjustments to enable participation . Journal of Clinical Nursing, 24(3-4), 573-581. Wiley.
    Type: Article DOI: 10.1111/jocn.12702 OpenAlex: https://openalex.org/W2099718648
    Crossref OpenAlex OpenCitations
  25. Jeremy R Parr , Samuel Brice , Patrick Welsh , Barry Ingham , Ann Le Couteur , Gemma Evans et al. (2020). Treating anxiety in autistic adults: study protocol for the Personalised Anxiety Treatment–Autism (PAT-A©) pilot randomised controlled feasibility trial . Trials, 21(1), 265. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1186/s13063-020-4161-2 OpenAlex: https://openalex.org/W3011678356
    Crossref OpenAlex OpenCitations
  26. Becca Lory (2019). For the Love of Science? Autism in Adulthood, 1(1), 12-14. SAGE Publications.
    Type: Article DOI: 10.1089/aut.2018.0005 OpenAlex: https://openalex.org/W2801676297
    Crossref OpenAlex OpenCitations
  27. Jonathan K. Y. Lai , Jonathan A. Weiss (2017). Priority service needs and receipt across the lifespan for individuals with autism spectrum disorder . Autism Research, 10(8), 1436-1447. Wiley.
    Type: Article DOI: 10.1002/aur.1786 OpenAlex: https://openalex.org/W2605185899
    Crossref OpenAlex OpenCitations
  28. Yifeng Wei , Patrick J. McGrath , Jill Hayden , Stan Kutcher (2015). Mental health literacy measures evaluating knowledge, attitudes and help-seeking: a scoping review . BMC Psychiatry, 15(1), 291-291. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1186/s12888-015-0681-9 OpenAlex: https://openalex.org/W2181127550
    Crossref OpenAlex OpenCitations
  29. Patricia A Deverka , Danielle C Lavallee , Priyanka J Desai , Laura C Esmail , Scott D Ramsey , David L Veenstra et al. (2012). Stakeholder participation in comparative effectiveness research: defining a framework for effective engagement . Journal of Comparative Effectiveness Research, 1(2), 181-194. Becaris Publishing Limited.
    Type: Article DOI: 10.2217/cer.12.7 OpenAlex: https://openalex.org/W2112939849
    Crossref OpenAlex OpenCitations
  30. Sandro Galea , Arijit Nandi , Jennifer Stuber , Joel Gold , Ron Acierno , Connie L. Best et al. (2005). Participant reactions to survey research in the general population after terrorist attacks . Journal of Traumatic Stress, 18(5), 461-465. Wiley.
    Type: Article DOI: 10.1002/jts.20053 OpenAlex: https://openalex.org/W2121650234
    Crossref OpenAlex OpenCitations
  31. Eilidh Cage , Jessica Di Monaco , Victoria Newell (2018). Experiences of Autism Acceptance and Mental Health in Autistic Adults . Journal of Autism and Developmental Disorders, 48(2), 473-484. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-017-3342-7 OpenAlex: https://openalex.org/W2766434912
    Crossref OpenAlex OpenCitations
  33. Michael G. Griffin , Patricia A. Resick , Angela E. Waldrop , Mindy B. Mechanic (2003). Participation in trauma research: Is there evidence of harm? Journal of Traumatic Stress, 16(3), 221-227. Wiley.
    Type: Article DOI: 10.1023/a:1023735821900 OpenAlex: https://openalex.org/W2156817166
    Crossref OpenAlex OpenCitations
  34. Gillian Mulvale , Ashleigh Miatello , Jenn Green , Maxwell Tran , Christina Roussakis , Alison Mulvale (2021). A COMPASS for Navigating Relationships in Co-Production Processes Involving Vulnerable Populations . International Journal of Public Administration, 44(9), 790-802. Informa UK Limited.
    Type: Article DOI: 10.1080/01900692.2021.1903500 OpenAlex: https://openalex.org/W3147741236
    Crossref OpenAlex OpenCitations
  35. Elisa S. Weiss , Rebecca Miller Anderson , Roz D. Lasker (2002). Making the Most of Collaboration: Exploring the Relationship Between Partnership Synergy and Partnership Functioning . Health Education & Behavior, 29(6), 683-698. SAGE Publications.
    Type: Article DOI: 10.1177/109019802237938 OpenAlex: https://openalex.org/W2167470526
    Crossref OpenAlex OpenCitations
  36. Alexandra Marinucci , Christine Grové , Kelly-Ann Allen , Joanne Riebschleger (2021). Evaluation of a youth mental health literacy and action program: Protocol for a cluster controlled trial . Mental Health & Prevention, 24, 200216. Elsevier BV.
    Type: Article DOI: 10.1016/j.mhp.2021.200216 OpenAlex: https://openalex.org/W3202888388
    Crossref OpenAlex OpenCitations
  37. (s. d.). Mental health first aid international. Mental Health First Aid International. https://mhfainternational.org/ . Published June 27, 2022. Accessed September 9, 2022.
    Type: Autre
    Crossref
  38. Stan Kutcher , Yifeng Wei , Heather Gilberds , Omary Ubuguyu , Tasiana Njau , Adena Brown et al. (2016). A school mental health literacy curriculum resource training approach: effects on Tanzanian teachers’ mental health knowledge, stigma and help-seeking efficacy . International Journal of Mental Health Systems, 10(1), 50-50. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1186/s13033-016-0082-6 OpenAlex: https://openalex.org/W2482776405
    Crossref OpenAlex OpenCitations
  39. Joanne Riebschleger , Shane Costello , Daniel L. Cavanaugh , Christine Grové (2019). Mental Health Literacy of Youth That Have a Family Member With a Mental Illness: Outcomes From a New Program and Scale . Frontiers in Psychiatry, 10, 2-2. Frontiers Media SA.
    Type: Article DOI: 10.3389/fpsyt.2019.00002 OpenAlex: https://openalex.org/W2912521470
    Crossref OpenAlex OpenCitations
  40. (s. d.). Teach mental health: Mental health literacy resource. TeachMentalHealth. Org. https://www.teachmentalhealth.org/ . Accessed September 9, 2022.
    Type: Autre
    Crossref
  41. Claire M Kelly , Anthony F Jorm , Annemarie Wright (2007). Improving mental health literacy as a strategy to facilitate early intervention for mental disorders . Medical Journal of Australia, 187(S7), S26. Wiley.
    Type: Article DOI: 10.5694/j.1326-5377.2007.tb01332.x OpenAlex: https://openalex.org/W2417351459
    Crossref OpenAlex OpenCitations
  42. Sandy Lazarus (2018). Learning and Teaching in Academic and Community Contexts . Dans Power and identity in the struggle for social justice: reflections on community psychology practice (pp. 91-117). Springer International Publishing.
    Type: Chapitre de livre DOI: 10.1007/978-3-319-99939-5_5 OpenAlex: https://openalex.org/W2903376624
    Crossref OpenAlex OpenCitations
  43. Målfrid Råheim , Liv Heide Magnussen , Ragnhild Johanne Tveit Sekse , Åshild Lunde , Torild Jacobsen , Astrid Blystad (2016). Researcher–researched relationship in qualitative research: Shifts in positions and researcher vulnerability . International Journal of Qualitative Studies on Health and Well-being, 11(1), 30996. Informa UK Limited.
    Type: Article DOI: 10.3402/qhw.v11.30996 OpenAlex: https://openalex.org/W2421163602
    Crossref OpenAlex OpenCitations
  44. Gill Hubbard , Kathryn Backett-Milburn , Debbie Kemmer (2001). Working with emotion: Issues for the researcher in fieldwork and teamwork . International Journal of Social Research Methodology, 4(2), 119-137. Informa UK Limited.
    Type: Article DOI: 10.1080/13645570116992 OpenAlex: https://openalex.org/W4243640086
    Crossref OpenAlex OpenCitations
  45. Sarah McGarrol (2017). The emotional challenges of conducting in‐depth research into significant health issues in health geography: reflections on emotional labour, fieldwork and life course . Area, 49(4), 436-442. Wiley.
    Type: Article DOI: 10.1111/area.12347 OpenAlex: https://openalex.org/W2612156099
    Crossref OpenAlex OpenCitations
  46. (s. d.). MHFA Intellectual Disability Guidelines. https://mhfa.com.au/sites/default/files/mhfa_id-guidelines_sept_2019.pdf . Accessed September 9, 2022.
    Type: Autre
    Crossref
  47. Chandra Lebenhagen (2020). Including Speaking and Nonspeaking Autistic Voice in Research . Autism in Adulthood, 2(2), 128-131. SAGE Publications.
    Type: Article DOI: 10.1089/aut.2019.0002 OpenAlex: https://openalex.org/W2975531104
    Crossref OpenAlex OpenCitations
  48. Cleo A. Samuel , Alexandra F. Lightfoot , Jennifer Schaal , Christina Yongue , Kristin Z. Black , Katrina Ellis et al. (2018). Establishing New Community-Based Participatory Research Partnerships using the Community-Based Participatory Research Charrette Model: Lessons from the Cancer Health Accountability for Managing Pain and Symptoms Study . Progress in Community Health Partnerships: Research, Education, and Action, 12(1), 89-99. Project MUSE.
    Type: Article DOI: 10.1353/cpr.2018.0010 OpenAlex: https://openalex.org/W2794890420
    Crossref OpenAlex OpenCitations
  49. (s. d.). Crane L, Pellicano L, Adams F, Harper G, Welch J. Know your normal: Mental health in young autistic adults. Ambitious about Autism. https://www.ambitiousaboutautism.org.uk/sites/default/files/youth-participation/toolkit/Ambitious-about_autism-know-your-normal-full-report.pdf . Accessed September 9, 2022.
    Type: Autre
    Crossref
  50. (s. d.). Autism Mental Health Literacy Project (AM-HeLP) Group. Mental health literacy guide for autism. https://www.yorku.ca/health/lab/ddmh/am-help/ . Accessed September 9, 2022.
    Type: Autre
    Crossref
  52. Laura Crane , Richard Batty , Hanna Adeyinka , Lorna Goddard , Lucy A. Henry , Elisabeth L. Hill (2018). Autism Diagnosis in the United Kingdom: Perspectives of Autistic Adults, Parents and Professionals . Journal of Autism and Developmental Disorders, 48(11), 3761-3772. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-018-3639-1 OpenAlex: https://openalex.org/W2808369589
    Crossref OpenAlex OpenCitations
  53. Julia Amann , Joanna Sleigh (2021). Too Vulnerable to Involve? Challenges of Engaging Vulnerable Groups in the Co-production of Public Services through Research . International Journal of Public Administration, 44(9), 715-727. Informa UK Limited.
    Type: Article DOI: 10.1080/01900692.2021.1912089 OpenAlex: https://openalex.org/W3156096122
    Crossref OpenAlex OpenCitations
  55. 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 OpenCitations
  56. Brittany St. John , Iulia Mihaila , Katelyn Dorrance , Leann DaWalt , Karla Ausderau (2018). Reflections From Co-Researchers With Intellectual Disability: Benefits to Inclusion in a Research Study Team . Intellectual and Developmental Disabilities, 56(4), 251-262. Informa UK Limited.
    Type: Article DOI: 10.1352/1934-9556-56.5.251 OpenAlex: https://openalex.org/W2884636724
    Crossref OpenAlex OpenCitations
  57. J den Houting (2021). Participatory and inclusive autism research practice guides . Participatory and inclusive autism research practice guides, 1.
    Type: Autre
    Crossref
  58. Juliet Corbin , Anselm Strauss (2008). Basics of Qualitative Research (3rd ed.): Techniques and Procedures for Developing Grounded Theory . SAGE Publications, Inc..
    Type: Livre DOI: 10.4135/9781452230153 OpenAlex: https://openalex.org/W2906151105
    Crossref OpenAlex OpenCitations
  60. Taylor J. Arnold , Andreina Malki , Jackeline Leyva , Jose Ibarra , Stephanie S. Daniel , Parissa J. Ballard et al. (2019). Engaging Youth Advocates in Community-Based Participatory Research on Child Farmworker Health in North Carolina . Progress in Community Health Partnerships: Research, Education, and Action, 13(2), 191-199. Project MUSE.
    Type: Article DOI: 10.1353/cpr.2019.0019 OpenAlex: https://openalex.org/W2948549893
    Crossref OpenAlex OpenCitations
  62. P. Roche , C. Shimmin , S. Hickes , M. Khan , O. Sherzoi , E. Wicklund et al. (2020). Valuing All Voices: refining a trauma-informed, intersectional and critical reflexive framework for patient engagement in health research using a qualitative descriptive approach . Research Involvement and Engagement, 6(1), 1. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1186/s40900-020-00217-2 OpenAlex: https://openalex.org/W3043533851
    Crossref OpenAlex OpenCitations
  63. Katherine McDonald , Colleen Gibbons , Nicole Conroy , Robert S. Olick (2022). Facilitating the inclusion of adults with intellectual disability as direct respondents in research: Strategies for fostering trust, respect, accessibility and engagement . Journal of Applied Research in Intellectual Disabilities, 35(1), 170-178. Wiley.
    Type: Article DOI: 10.1111/jar.12936 OpenAlex: https://openalex.org/W3199245500
    Crossref OpenAlex OpenCitations
  64. Virginia Braun , Victoria Clarke (2022). Conceptual and design thinking for thematic analysis. Qualitative Psychology, 9(1), 3-26. American Psychological Association (APA).
    Type: Article DOI: 10.1037/qup0000196 OpenAlex: https://openalex.org/W3154463802
    Crossref OpenAlex OpenCitations
  65. Sarah Lonbay , Amy Pearson * , Emma Hamilton , Pat Higgins , Emma Foulkes , Michelle Glascott (2021). Trauma informed participatory research: Reflections on co-producing a research proposal . Gateways: International Journal of Community Research and Engagement, 14(1), 1. University of Technology, Sydney (UTS).
    Type: Article DOI: 10.5130/ijcre.v14i1.7728 OpenAlex: https://openalex.org/W3182814370
    Crossref OpenAlex OpenCitations
  66. BC O’Brien (2014). O’Brien BC, Harris IB, Beckman TJ, Reed DA, Cook DA. Standards for reporting qualitative research: a synthesis of recommendations. Acad Med. 2014;89(9):1245–51. https://doi.org/10 . 1097/ACM. 000000000000038. Acad Med, 89(9), 1245.
    Type: Autre DOI: 10.1097/acm.000000000000038
    Crossref
  67. (s. d.). Strategy for Patient-Oriented Research: Patient engagement framework. Canadian Health Institutes for Research. https://cihr-irsc.gc.ca/e/48413.html . Updated May 27, 2019. Accessed September 9, 2022.
    Type: Autre
    Crossref
  69. Kristen Gillespie-Lynch , Jennifer B Bisson , Sabine Saade , Rita Obeid , Bella Kofner , Ashley Johnson Harrison et al. (2022). If you want to develop an effective autism training, ask autistic students to help you . Autism, 26(5), 1082-1094. SAGE Publications.
    Type: Article DOI: 10.1177/13623613211041006 OpenAlex: https://openalex.org/W3198012637
    Crossref OpenAlex OpenCitations
  70. Kevin Jefferson , Kaitlyn K. Stanhope , Carla Jones-Harrell , Aimée Vester , Emma Tyano , Casey D. Xavier Hall (2021). A scoping review of recommendations in the English language on conducting research with trauma-exposed populations since publication of the Belmont report; thematic review of existing recommendations on research with trauma-exposed populations . PLOS ONE, 16(7), e0254003. Public Library of Science (PLoS).
    Type: Article DOI: 10.1371/journal.pone.0254003 OpenAlex: https://openalex.org/W3186772641
    Crossref OpenAlex OpenCitations
  71. Emma Gowen (2019). Gowen E, Taylor R, Bleazard T, Greenstein A, Baimbridge P, Poole D. Guidelines for conducting research studies with the autism community. Autism Policy Pract. 2019;2(1):29–45. Autism Policy Pract, 2(1), 29.
    Type: Autre
    Crossref
  72. Joseph Long (2017). Long J, Panese J, Ferguson J, Hamill MA, Miller J. Enabling voice and participation in autism services: using practitioner research to develop inclusive practice. Good Autism Pract. 2017;18(2):6–14. Good Autism Pract, 18(2), 6.
    Type: Autre
    Crossref