Added on 30/11/2024
Journal article of the type Editorial ( ; english)
*One co-author has publicly identified as autistic. [Learn more about this mention]
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[First lines]
Community engagement and involvement is progressively integral to autism research. This journal was an early champion, initially mandating to report on community involvement in 2019 (Tan et al., 2024) and more recently encouraging authors to include a reflection on participatory research practices in manuscripts (Fletcher-Watson, 2024). A range of recent papers (den Houting et al., 2022; Fletcher-Watson et al., 2019; Nicolaidis et al., 2019; Pickard et al., 2022) provide guidelines for best practice in community involvement in autism research, including consultations (mostly in an advisory role, with limited involvement in producing the research), co-production (full collaboration in producing the research) and community-led research production (den Houting, 2021). This editorial aims to build on this literature to reflect on the challenges and opportunities associated with community involvement in PhD research projects.
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(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.
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S. Abayneh, H. Lempp, S. Rai, E. Girma, M. Getachew, A. Alem, B. Kohrt, C. Hanlon (2022). "Empowerment training to support service user involvement in mental health system strengthening in rural Ethiopia: A mixed-methods pilot study." BMC Health Services Research, 22(1), Article 880. doi:10.1186/s12913-022-08290-x
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O. Burningham, A. Chen, E. Genovesi, W. Belay, I. Ahmed, M. Ayele, F. Girma, L. T. Lakew, C. Hanlon, R. Hoekstra (2024). "Inclusive education for children with developmental disabilities in Ethiopia: Stakeholder views on benefits, disadvantages and priorities for action." Journal of Autism and Developmental Disorders. Advance online publication. doi:10.1007/s10803-024-06549-2
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M. Crean (2018). "Minority scholars and insider-outsider researcher status: Challenges along a personal, professional and political continuum." Forum Qualitative Sozialforschung / Forum: Qualitative Social Research, 19(1), Article 1. doi:10.17169/fqs-19.1.2874
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J. den Houting* (2021). "Participatory and inclusive autism research practice guides." Autism CRC. (Source)
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J. den Houting*, J. Higgins*, K. Isaacs*, J. Mahony, E. Pellicano (2022). "From ivory tower to inclusion: Stakeholders’ experiences of community engagement in Australian autism research." Frontiers in Psychology, 13, Article 876990. doi:10.3389/fpsyg.2022.876990
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E. Genovesi, I. Ahmed, M. Ayele, W. Belay, O. Burningham, A. Chen, F. Girma, L. T. Lakew, C. Hanlon, R. Hoekstra (2024). "Exploring context for implementation of inclusive education for children with developmental disabilities in mainstream primary schools in Ethiopia." PLOS ONE, 19(8), Article e0307576. doi:10.1371/journal.pone.0307576
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S. Knaak, G. Modgill, S. B. Patten (2014). "Key ingredients of anti-stigma programs for health care providers: A data synthesis of evaluative studies." Canadian Journal of Psychiatry, 59(10, Suppl. 1), S19–S26. doi:10.1177/070674371405901s06
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H. Kuper, S. Hameed, V. Reichenberger, N. Scherer, J. Wilbur, M. Zuurmond, I. Mactaggart, T. Bright, T. Shakespeare (2021). "Participatory research in disability in low- and middle-income countries: What have we learnt and what should we do?" Scandinavian Journal of Disability Research, 23(1), 328–337. doi:10.16993/sjdr.814
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F. Liu, S. Begeer, R. A. Hoekstra, C. Wang, A. M. Scheeren (2024). "Self-reported psychosocial outcomes of autistic adults living in China and the Netherlands." Autism in Adulthood. Advance online publication. doi:10.1089/aut.2024.0073
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National Institute for Health and Care Research (2019). "Taking stock–NIHR public involvement and engagement." (Source)
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H. Pickard, E. Pellicano, J. den Houting*, L. Crane (2022). "Participatory autism research: Early career and established researchers’ views and experiences." Autism, 26(1), 75–87. doi:10.1177/13623613211019594
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S. Rai, D. Gurung, B. Kohrt (2023). "The PhotoVoice method for collaborating with people with lived experience of mental health conditions to strengthen mental health services." Global Mental Health, 10, Article e80. doi:10.1017/gmh.2023.73
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Z. Szlamka, I. Ahmed, E. Genovesi, M. Kinfe, R. A. Hoekstra, C. Hanlon (2023). "Conceptualising the empowerment of caregivers raising children with developmental disabilities in Ethiopia: A qualitative study." BMC Health Services Research, 23(1), Article 1420. doi:10.1186/s12913-023-10428-4
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B. Tekola, Y. Baheretibeb, I. Roth, D. Tilahun, A. Fekadu, C. Hanlon, R. A. Hoekstra (2016). "Challenges and opportunities to improve autism services in low-income countries: Lessons from a situational analysis in Ethiopia." Global Mental Health, 3, Article e21. doi:10.1017/gmh.2016.17
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B. Tekola, M. Kinfe, F. Girma, C. Hanlon, R. A. Hoekstra (2020). "Perceptions and experiences of stigma among parents of children with developmental disorders in Ethiopia: A qualitative study." Social Science & Medicine (1982), 256, 113034. doi:10.1016/j.socscimed.2020.113034
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G. Thornicroft, N. Mehta, S. Clement, S. Evans-Lacko, M. Doherty*, D. Rose, M. Koschorke, R. Shidhaye, C. O’Reilly, C. Henderson (2016). "Evidence for effective interventions to reduce mental-health-related stigma and discrimination." The Lancet, 387(10023), 1123–1132. doi:10.1016/s0140-6736(15)00298-6
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