Abstract
The World Health Organization's (WHO) integrated approach to primary care differs from the traditional patient-centered approach to primary care, resulting in a gap that needs to be addressed. Recently, the Community-Based Participatory Research (CBPR) model has emerged as an alternative research approach to the traditional model, and has gained considerable attention in the field of autism research.The aim of this scoping review was to explore the pattern and effectiveness of CBPR in the ASD population. The findings suggest that CBPR is a promising and effective research model for skills enhancement and healthcare for autistic people. This review highlights the importance of using the CBPR model in ASD research which can help researchers build multi-partnerships with communities and other stakeholders to facilitate the design and implementation of health promotion programs.
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References
Adler, R. R., et al. (2022). Community Based Participatory Research (CBPR): An Underutilized Approach to Address Surgical Disparities. Annals of Surgery, 275, 496–499. https://doi.org/10.1097/sla.0000000000005329
Bess, K. D., Prilleltensky, I., Perkins, D. D., & Collins, L. V. (2009). Participatory organizational change in community-based health and human services: From tokenism to political engagement. American Journal of Community Psychology, 43, 134–148. https://doi.org/10.1007/s10464-008-9222-8
Brian, J., et al. (2022). Effectiveness of a parent-mediated intervention for toddlers with autism spectrum disorder: Evidence from a large community implementation. Autism : The International Journal of Research and Practice, 26, 1882–1897. https://doi.org/10.1177/13623613211068934
Brignell, A., Marraffa, C., Williams, K., & May, T. (2022). Memantine for autism spectrum disorder. The Cochrane database of systematic reviews, 8, Cd013845. https://doi.org/10.1002/14651858.CD013845.pub2
Campbell, D.J.T., et al. (2021). Using a community-based participatory research approach to meaningfully engage those with lived experience of diabetes and homelessness. BMJ Open Diabetes Research & Care 9. https://doi.org/10.1136/bmjdrc-2021-002154.
Campbell, J. A., Yan, A., & Egede, L. E. (2020). Community-Based Participatory Research Interventions to Improve Diabetes Outcomes: A Systematic Review. The Diabetes Educator, 46, 527–539. https://doi.org/10.1177/0145721720962969
Chanchien Parajón, L., Hinshaw, J., Sanchez, V., Minkler, M., & Wallerstein, N. (2021). Practicing Hope: Enhancing Empowerment in Primary Health Care through Community-based Participatory Research. American Journal of Community Psychology, 67, 297–311. https://doi.org/10.1002/ajcp.12526
Cohrs, A. C., & Leslie, D. L. (2017). Depression in Parents of Children Diagnosed with Autism Spectrum Disorder: A Claims-Based Analysis. Journal of Autism and Developmental Disorders, 47, 1416–1422. https://doi.org/10.1007/s10803-017-3063-y
Cooper, K., Loades, M. E., & Russell, A. J. (2018). Adapting Psychological Therapies for Autism - Therapist Experience, Skills and Confidence. Research in Autism Spectrum Disorder, 45, 43–50. https://doi.org/10.1016/j.rasd.2017.11.002
Coughlin, S. S. (2016). Community-based participatory research studies on HIV/AIDS prevention, 2005-2014. Jacobs Journal of Community Medicine, 2(1), 019
Diener, M. L., Wright, C. A., Taylor, C., D’Astous, V., & Lasrich, L. (2020). Dual perspectives in autism spectrum disorders and employment: Toward a better fit in the workplace. Work (reading, Mass), 67, 223–237. https://doi.org/10.3233/wor-203268
Ellen Selman, L., Fox, F., Aabe, N., Turner, K., Rai, D., & Redwood, S. (2018). “You are labelled by your children’s disability” - A community-based, participatory study of stigma among Somali parents of children with autism living in the United Kingdom. Ethnicity & Health, 23, 781–796. https://doi.org/10.1080/13557858.2017.1294663
Estes, A., Munson, J., Dawson, G., Koehler, E., Zhou, X. H., & Abbott, R. (2009). Parenting stress and psychological functioning among mothers of preschool children with autism and developmental delay. Autism : The International Journal of Research and Practice, 13, 375–387. https://doi.org/10.1177/1362361309105658
Farmer, N., et al. (2022). Going virtual during the COVID-19 pandemic: Adaptation of a mixed-methods dietary behavior study within a community-based participatory research study of African-American adults at risk for cardiovascular disease. BMC Medical Research Methodology, 22, 330. https://doi.org/10.1186/s12874-022-01806-3
Fleming, P. J., et al. (2023). Antiracism and Community-Based Participatory Research: Synergies, Challenges, and Opportunities. American Journal of Public Health, 113, 70–78. https://doi.org/10.2105/ajph.2022.307114
Hayes, S. A., & Watson, S. L. (2013). The impact of parenting stress: A meta-analysis of studies comparing the experience of parenting stress in parents of children with and without autism spectrum disorder. Journal of Autism and Developmental Disorders, 43, 629–642. https://doi.org/10.1007/s10803-012-1604-y
Hirota, T., & King, B. H. (2023). Autism Spectrum Disorder: A Review. Jama, 329, 157–168. https://doi.org/10.1001/jama.2022.23661
Jahan, S., Araf, K., Griffiths, M. D., Gozal, D., & Mamun, M. A. (2020). Depression and suicidal behaviors among Bangladeshi mothers of children with Autism Spectrum Disorder: A comparative study. Asian Journal of Psychiatry, 51, 101994. https://doi.org/10.1016/j.ajp.2020.101994
Nichols, M., Magwood, G., Woodbury, M., Brown, K., Jenkins, C., & Owolabi, M. (2022). Crafting Community-Based Participatory Research Stroke Interventions. Stroke, 53, 680–688. https://doi.org/10.1161/strokeaha.121.035306
Nicolaidis, C., et al. (2013). Comparison of healthcare experiences in autistic and non-autistic adults: A cross-sectional online survey facilitated by an academic-community partnership. Journal of General Internal Medicine, 28, 761–769. https://doi.org/10.1007/s11606-012-2262-7
Nicolaidis, C., et al. (2016). The Development and Evaluation of an Online Healthcare Toolkit for Autistic Adults and their Primary Care Providers. Journal of General Internal Medicine, 31, 1180–1189. https://doi.org/10.1007/s11606-016-3763-6
Nicolaidis, C., et al. (2021). Psychometric testing of a set of patient-reported instruments to assess healthcare interventions for autistic adults. Autism : The International Journal of Research and Practice, 25, 786–799. https://doi.org/10.1177/1362361320967178
Ntalindwa, T., Nduwingoma, M., Karangwa, E., Rashid Soron, T., Uworwabayeho, A., & Uwineza, A. (2021). Development of a Mobile App to Improve Numeracy Skills of Children With Autism Spectrum Disorder: Participatory Design and Usability Study. JMIR Pediatrics and Parenting, 4, e21471. https://doi.org/10.2196/21471
O’Malley, H.A.L. (2005). Scoping studies: Towards a methodological framework. International Journal of Social Research Methodology, 19–32. https://doi.org/10.1080/1364557032000119616.
Ou, J. J., et al. (2015). Employment and financial burden of families with preschool children diagnosed with autism spectrum disorders in urban China: Results from a descriptive study. BMC Psychiatry, 15, 3. https://doi.org/10.1186/s12888-015-0382-4
Quetsch, L. B., Bradley, R. S., Theodorou, L., Newton, K., & McNeil, C. B. (2022). Community-based Agency Delivery of Parent-Child Interaction Therapy: Comparing Outcomes for Children with and Without Autism Spectrum Disorder and/or Developmental Delays. Journal of Autism and Developmental Disorders. https://doi.org/10.1007/s10803-022-05755-0
Raymaker, D. M. (2017). Reflections of a community-based participatory researcher from the intersection of disability advocacy, engineering, and the academy. Action Research (London), 15, 258–275. https://doi.org/10.1177/1476750316636669
Raymaker, D. M., Kapp, S. K., McDonald, K. E., Weiner, M., Ashkenazy, E., & Nicolaidis, C. (2019). Development of the AASPIRE Web Accessibility Guidelines for Autistic Web Users. Autism in Adulthood : Challenges and Management, 1, 146–157. https://doi.org/10.1089/aut.2018.0020
Raymaker, D. M., et al. (2020). “Having All of Your Internal Resources Exhausted Beyond Measure and Being Left with No Clean-Up Crew”: Defining Autistic Burnout. Autism in Adulthood : Challenges and Management, 2, 132–143. https://doi.org/10.1089/aut.2019.0079
Rivard, M., Morin, D., Coulombe, P., Morin, M., & Mello, C. (2022). The Diagnostic Period for Autism: Risk and Protective Factors for Family Quality of Life in Early Childhood. Journal of Autism and Developmental Disorders. https://doi.org/10.1007/s10803-022-05686-w
Roane, H. S., Fisher, W. W., & Carr, J. E. (2016). Applied Behavior Analysis as Treatment for Autism Spectrum Disorder. The Journal of Pediatrics, 175, 27–32. https://doi.org/10.1016/j.jpeds.2016.04.023
Rodriguez Espinosa, P., & Verney, S. P. (2021). The Underutilization of Community-based Participatory Research in Psychology: A Systematic Review. American Journal of Community Psychology, 67, 312–326. https://doi.org/10.1002/ajcp.12469
Roman-Urrestarazu, A., van Kessel, R., Allison, C., Matthews, F. E., Brayne, C., & Baron-Cohen, S. (2021). Association of Race/Ethnicity and Social Disadvantage With Autism Prevalence in 7 Million School Children in England. JAMA Pediatrics, 175, e210054. https://doi.org/10.1001/jamapediatrics.2021.0054
Rosa, W. E., Elk, R., & Tucker, R. O. (2022). Community-based participatory research in palliative care: A social justice imperative. The Lancet Public Health, 7, e104. https://doi.org/10.1016/s2468-2667(21)00305-4
Schiltz, H. K., et al. (2018). Examining the Links Between Challenging Behaviors in Youth with ASD and Parental Stress, Mental Health, and Involvement: Applying an Adaptation of the Family Stress Model to Families of Youth with ASD. Journal of Autism and Developmental Disorders, 48, 1169–1180. https://doi.org/10.1007/s10803-017-3446-0
Schoen, S. A., et al. (2019). A systematic review of ayres sensory integration intervention for children with autism. Autism Research : Official Journal of the International Society for Autism Research, 12, 6–19. https://doi.org/10.1002/aur.2046
Shtayermman, O., & Zhang, Y. (2022). Attachment Style and Mental Health Profiles of Parents Caring for a Child with Autism: Suicidal Ideation, Depression and Anxiety. Journal of Autism and Developmental Disorders, 52, 4872–4882. https://doi.org/10.1007/s10803-021-05355-4
Smith, T., Iadarola, S., Mandell, D. S., Harwood, R., & Kasari, C. (2017). Community-Partnered Research With Urban School Districts That Serve Children With Autism Spectrum Disorder. Academic Pediatrics, 17, 614–619. https://doi.org/10.1016/j.acap.2017.04.017
Springer, M. V., & Skolarus, L. E. (2019). Community-Based Participatory Research. Stroke, 50, e48–e50. https://doi.org/10.1161/strokeaha.118.024241
Strang, J. F., et al. (2021). A Clinical Program for Transgender and Gender-Diverse Neurodiverse/Autistic Adolescents Developed through Community-Based Participatory Design. Journal of Clinical Child and Adolescent Psychology : The Official Journal for the Society of Clinical Child and Adolescent Psychology, American Psychological Association, Division, 53(50), 730–745. https://doi.org/10.1080/15374416.2020.1731817
Tibor, N., Farkas, J. M., & Kargas, Niko. (2020). Enhancing Resilience in Autistic Adults Using Community-based Participatory Research: A Novel HRD Intervention in Employment Service Provision. Advances in Developing Human Resources, 22(4), 370–386. https://doi.org/10.1177/1523422320946293
Veneruso, M., et al. (2022). Short report. Cooking for autism: a pilot study of an innovative culinary laboratory for Italian adolescents and emerging adults with autism spectrum disorder. Research in Developmental Disabilities, 126, 104259. https://doi.org/10.1016/j.ridd.2022.104259
Whitesell, N. R., Mousseau, A., Parker, M., Rasmus, S., & Allen, J. (2020). Promising Practices for Promoting Health Equity Through Rigorous Intervention Science with Indigenous Communities. Prevention Science : The Official Journal of the Society for Prevention Research, 21, 5–12. https://doi.org/10.1007/s11121-018-0954-x
Zhu, R., Hardy, D., & Myers, T. (2022). Community Led Co-Design of a Social Networking Platform with Adolescents with Autism Spectrum Disorder. Journal of Autism and Developmental Disorders, 52, 38–51. https://doi.org/10.1007/s10803-021-04918-9
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The research is supported by the Natural Science Foundation of Heilongjiang Province, China (LH2021H023).
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Chen, J., Yao, D., Lin, S. et al. Application of the Community-based Participatory Research in Autism Spectrum Disorder: A Scoping Review. Rev J Autism Dev Disord (2024). https://doi.org/10.1007/s40489-024-00446-1
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DOI: https://doi.org/10.1007/s40489-024-00446-1