For autistic persons by autistic persons: acceptability of a structured peer support service according to key stakeholders

Added on 18/11/2024

Type de contenu

Journal article of the type Scientific research ( ; english)

Alena Valderrama , Alejandra Martinez , Kathleen Charlebois , Lucila Guerrero * , Baudouin Forgeot d'Arc
For autistic persons by autistic persons: acceptability of a structured peer support service according to key stakeholders published in the journal "Health expectations" n°26, vol.1, 13 pages , doi: 10.1111/hex.13680

*One co-author has publicly identified as autistic. [Learn more about this mention]

=> Unrestricted access and free

Summary/Presentation

Introduction. Social support is a protective factor in the mental health of autistic people. Furthermore, prejudice regarding autistic people is a constraint for the development of social support programmes by autistic peers.
Methods. The objective of this study is to describe the anticipated acceptability of structured peer support programmes for and by autistic persons. Fifteen key stakeholders (six autistic adults, four caregivers and five service providers) participated in in-depth semistructured interviews. A qualitative thematic analysis of the content of the verbatim was carried out.
Findings. We found that while a structured peer social support programme is acceptable to autistic people and caregivers, there was no consensus among service providers. The latter expressed doubts about the ability of autistic people to offer support. The framing of discussions between peers, the training of peer helpers, the support for autistic leadership and an organization that considers the communicational and sensory characteristics of autistic persons, could influence adherence to such a programme. Moreover, a space without service providers is an important condition for the acceptability of a peer support programme.
Conclusion. A structured peer support service for and by autistic persons could be an innovative way to answer the unmet support needs of autistic people. It seems essential to anticipate potential barriers and facilitators and to communicate among health professionals to promote this approach and reduce possible prejudice about the ability of autistic people to offer support to their peers. More studies are necessary.
Patient or Public Contribution. Fifteen key stakeholders who are involved in autistic people's trajectory of service and support participated in this research. We are a research team composed of healthcare professionals and researchers, in addition to one member of our team being an autistic advocate and a mental health peer-support mentor. Two members of our team are also parents of autistic children. The comprehensibility of the questions for the interview was consulted and discussed with one autistic advocate-collaborator.

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.

  • M. Ayres, J. Parr, J. Rodgers, D. Mason, L. Avery, D. Flynn (2018). "A systematic review of quality of life of adults on the autism spectrum". Autism, 22(7). doi:10.1177/1362361317714988

  • E. Billstedt, I. Carina Gillberg, C. Gillberg (2011). "Aspects of quality of life in adults diagnosed with autism in childhood". Autism, 15(1). doi:10.1177/1362361309346066

  • R. Boothroyd, E. Fisher (2010). "Peers for Progress: promoting peer support for health around the world". Family Practice, 27(suppl 1). doi:10.1093/fampra/cmq017

  • J. Brooks, N. King (2014). "Doing template analysis: evaluating an end of life care service." In: Sage Research Methods Cases. SAGE Publications, Ltd.

  • L. Camm-Crosbie, L. Bradley, R. Shaw, S. Baron-Cohen, S. Cassidy (2019). "'People like me don't get support': Autistic adults' experiences of support and treatment for mental health difficulties, self-injury and suicidality". Autism, 23(6). doi:10.1177/1362361318816053

  • J. Caron, S. Guay (2012). "Soutien social et santé mentale : concept, mesures, recherches récentes et implications pour les cliniciens". smq, 30(2). doi:10.7202/012137ar

  • S. Chapin, S. Boyle, S. Babb, D. McNaughton (2018). "Effects of Peer Support Interventions on the Communication of Preschoolers with Autism Spectrum Disorder: A Systematic Review". Semin Speech Lang, 39(05). doi:10.1055/s-0038-1670670

  • Y. Chen, L. Senande, M. Thorsen, K. Patten (2021). "Peer preferences and characteristics of same-group and cross-group social interactions among autistic and non-autistic adolescents". Autism, 25(7). doi:10.1177/13623613211005918

  • M. Cherba, C. Thoër, O. Turbide, V. Denault, L. Renaud, A. Valderrama, I. Courcy, B. Cordelier, M. Laquerre, C. Cyr, J. Hovington, C. Muloin (2019). "Le soutien social en ligne comme mode d'intervention psychosociale : revue de littérature, pistes de recherche et recommandations pour les intervenants". Santé Publique, Vol. 31(1). doi:10.3917/spub.191.0083

  • D. Como, L. Floríndez, C. Tran, S. Cermak, L. Stein Duker (2020). "Examining unconscious bias embedded in provider language regarding children with autism". Nursing & Health Sciences, 22(2). doi:10.1111/nhs.12617

  • M. Couture, C. Normand, C. Jacques, J. Ruel, F. Beauregard, S. Fecteau, J. Berbari (2020). "Perspectives on the Social Participation of Adults With Autism Spectrum Disorders (ASD): Descriptive Data From a Provincial Survey". The American Journal of Occupational Therapy, 74(4_Supplement_1). doi:10.5014/ajot.2020.74s1-rp103d

  • F.B. Diallo (2017). "Surveillance du trouble du spectre de l'autisme au Québec." Institut national de santé publique du Québec, Bureau d'information et d'études en santé des populations. (Source)

  • K. Duerksen, R. Besney, M. Ames, C. McMorris (2021). "Supporting Autistic Adults in Postsecondary Settings: A Systematic Review of Peer Mentorship Programs". Autism in Adulthood, 3(1). doi:10.1089/aut.2020.0054

  • A. Émond, J.C. Gosselin, L. Dunnigan (2010). "Cadre conceptuel de la santé et de ses déterminants: résultat d'une réflexion commune." Ministère de la santé et des services sociaux, Santé et services sociaux Québec, Direction des communications. (Source)

  • J. First, N. Cheak-Zamora, M. Teti (2016). "A qualitative study of stress and coping when transitioning to adulthood with autism spectrum disorder". Journal of Family Social Work, 19(3). doi:10.1080/10522158.2016.1185074

  • E. Fisher, M. Maggy Coufal, H. Parada, J. Robinette, P. Tang, D. Urlaub, C. Castillo, L. Guzman-Corrales, S. Hino, J. Hunter, A. Katz, Y. Symes, H. Worley, C. Xu (2014). "Peer Support in Health Care and Prevention: Cultural, Organizational, and Dissemination Issues". Annu. Rev. Public Health, 35(1). doi:10.1146/annurev-publhealth-032013-182450

  • E. Fisher, G. Ayala, L. Ibarra, A. Cherrington, J. Elder, T. Tang, M. Heisler, M. Safford, D. Simmons, I. (2015). "Contributions of Peer Support to Health, Health Care, and Prevention: Papers from Peers for Progress". The Annals of Family Medicine, 13(Suppl_1). doi:10.1370/afm.1852

  • U. Flick (2013). "The SAGE Handbook of Qualitative Data Analysis." SAGE Publications Inc.

  • U. Flick (2014). "The SAGE Handbook of Qualitative Data Analysis".

  • P.I. Fusch, L.R. Ness (2015). "Are we there yet? Data saturation in qualitative research." Qual Rep, 20(9), 1408.

  • N. Gale, G. Heath, E. Cameron, S. Rashid, S. Redwood (2013). "Using the framework method for the analysis of qualitative data in multi-disciplinary health research". BMC Med Res Methodol, 13(1). doi:10.1186/1471-2288-13-117

  • N. Gelbar, I. Smith, B. Reichow (2014). "Systematic Review of Articles Describing Experience and Supports of Individuals with Autism Enrolled in College and University Programs". J Autism Dev Disord, 44(10). doi:10.1007/s10803-014-2135-5

  • K. Gillespie-Lynch, D. Bublitz, A. Donachie, V. Wong, P. Brooks, J. D’Onofrio (2017). "'For a Long Time Our Voices have been Hushed': Using Student Perspectives to Develop Supports for Neurodiverse College Students". Front. Psychol., 8. doi:10.3389/fpsyg.2017.00544

  • G. Goldkuhl, S. Cronholm (2010). "Adding Theoretical Grounding to Grounded Theory: Toward Multi-Grounded Theory". International Journal of Qualitative Methods, 9(2). doi:10.1177/160940691000900205

  • M. Frampton Gwynette, D. Morriss, N. Warren, J. Truelove, J. Warthen, C. Paul Ross, G. Mood, C. Anne Snook, J. Borckardt (2017). "Social Skills Training for Adolescents With Autism Spectrum Disorder Using Facebook (Project Rex Connect): A Survey Study". JMIR Ment Health, 4(1). doi:10.2196/mental.6605

  • T. Fasihi Harandi, M. Mohammad Taghinasab, T. Dehghan Nayeri (2017). "The correlation of social support with mental health: A meta-analysis". Electron Physician, 9(9). doi:10.19082/5212

  • E. Hotez, C. Shane-Simpson, R. Obeid, D. DeNigris, M. Siller, C. Costikas, J. Pickens, A. Massa, M. Giannola, J. D'Onofrio, K. Gillespie-Lynch (2018). "Designing a Summer Transition Program for Incoming and Current College Students on the Autism Spectrum: A Participatory Approach". Front. Psychol., 9. doi:10.3389/fpsyg.2018.00046

  • J.S. House (1981). "Work Stress and Social Support." Addison-Wesley Pub. Co.

  • R. PS John, F. Knott, K. Harvey (2018). "Myths about autism: An exploratory study using focus groups". Autism, 22(7). doi:10.1177/1362361317714990

  • S. Kapp* (2018). "Social Support, Well-being, and Quality of Life Among Individuals on the Autism Spectrum". Pediatrics, 141(Supplement_4). doi:10.1542/peds.2016-4300n

  • C. Penny Hinson Langford, J. Bowsher, J. Maloney, P. Lillis (1997). "Social support: a conceptual analysis". Journal of Advanced Nursing, 25(1). doi:10.1046/j.1365-2648.1997.1997025095.x

  • M. Marmot, R.G. Wilkinson (2000). "Les déterminants sociaux de la santé: les faits." OMS Bureau régional de l'Europe.

  • P. Moss, W. Mandy, P. Howlin (2017). "Child and Adult Factors Related to Quality of Life in Adults with Autism". J Autism Dev Disord, 47(6). doi:10.1007/s10803-017-3105-5

  • L. Negura (2006). "L'analyse de contenu dans l'étude des représentations sociales." SociologieS. (Source)

  • J. Noyes, A. Booth, K. Flemming, R. Garside, A. Harden, S. Lewin, T. Pantoja, K. Hannes, M. Cargo, J. Thomas (2018). "Cochrane Qualitative and Implementation Methods Group guidance series—paper 3: methods for assessing methodological limitations, data extraction and synthesis, and confidence in synthesized qualitative findings". Journal of Clinical Epidemiology, 97. doi:10.1016/j.jclinepi.2017.06.020

  • M. Ofner, A. Coles, M.L. Decou (2018). "Autism spectrum disorder among children and youth in Canada 2018: a report of the national autism spectrum disorder surveillance system." Public Health Agency of Canada. (Source)

  • B. O’Brien, I. Harris, T. Beckman, D. Reed, D. Cook (2014). "Standards for Reporting Qualitative Research". Academic Medicine, 89(9). doi:10.1097/acm.0000000000000388

  • M. O’Reilly, N. Parker (2013). "'Unsatisfactory Saturation': a critical exploration of the notion of saturated sample sizes in qualitative research". Qualitative Research, 13(2). doi:10.1177/1468794112446106

  • M.Q. Patton (2014). "Qualitative Research & Evaluation Methods." SAGE Publications Inc. (Source)

  • J.F. Pelletier, L. Davidson (2019). "Fondements du rétablissement." (Source)

  • R. Pineault, C. Daveluy (2020). "La Planification de La Santé. Concepts, Méthodes, Stratégies." 2nd ed. Agence d'Arc.

  • J. Renty, H. Roeyers (2006). "Quality of life in high-functioning adults with autism spectrum disorder". Autism, 10(5). doi:10.1177/1362361306066604

  • O. Robinson (2014). "Sampling in Interview-Based Qualitative Research: A Theoretical and Practical Guide". Qualitative Research in Psychology, 11(1). doi:10.1080/14780887.2013.801543

  • M. Sandelowski (2010). "What's in a name? Qualitative description revisited". Research in Nursing & Health, 33(1). doi:10.1002/nur.20362

  • M. Sekhon, M. Cartwright, J. Francis (2017). "Acceptability of healthcare interventions: an overview of reviews and development of a theoretical framework". BMC Health Serv Res, 17(1). doi:10.1186/s12913-017-2031-8

  • K. Skivington, L. Matthews, S. Anne Simpson, P. Craig, J. Baird, J. Blazeby, K. Anne Boyd, N. Craig, D. French, E. McIntosh, M. Petticrew, J. Rycroft-Malone, M. White, L. Moore (2021). "A new framework for developing and evaluating complex interventions: update of Medical Research Council guidance". BMJ. doi:10.1136/bmj.n2061

  • K. Sunderland, S. Mahajan, S. Grenier, W. Mishkin (2013). "Guidelines for the Practice and Training of Peer Support." Mental Health Commission of Canada. (Source)

  • D. Ward, K. Dill-Shackleford, M. Mazurek (2018). "Social Media Use and Happiness in Adults with Autism Spectrum Disorder". Cyberpsychology, Behavior, and Social Networking, 21(3). doi:10.1089/cyber.2017.0331

  • B. Weidle, B. Bolme, A. Lise Hoeyland (2006). "Are Peer Support Groups for Adolescents with Asperger's Syndrome Helpful?". Clin Child Psychol Psychiatry, 11(1). doi:10.1177/1359104506059119

  • P. Williams, L. Barclay, V. Schmied (2004). "Defining Social Support in Context: A Necessary Step in Improving Research, Intervention, and Practice". Qual Health Res, 14(7). doi:10.1177/1049732304266997

  • Y. Zhao, J. Zhang, M. Wu (2019). "Finding Users' Voice on Social Media: An Investigation of Online Support Groups for Autism-Affected Users on Facebook". IJERPH, 16(23). doi:10.3390/ijerph16234804


 
Summarize/Comment on/Translate this reference?