Community involvement in PhD students’ autism research projects: Challenges and opportunities

Abayneh S. Lempp H. Rai S. Girma E. Getachew M. Alem A. Kohrt B. A. Hanlon C. (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. https://doi.org/10.1186/s12913-022-08290-x

Burningham O. Chen A. Genovesi E. Belay W. Ahmed I. Ayele M. Girma F. Lakew L. T. Hanlon C. Hoekstra R. A. (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. https://doi.org/10.1007/s10803-024-06549-2

Crean M. (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. https://doi.org/10.17169/fqs-19.1.2874

den Houting J . (2021). Participatory and inclusive autism research practice guides. Autism CRC. https://www.autismcrc.com.au/best-practice/inclusive-research-guides

den Houting J. Higgins J. Isaacs K. Mahony J. Pellicano E . (2022). From ivory tower to inclusion: Stakeholders’ experiences of community engagement in Australian autism research. Frontiers in Psychology, 13, Article 876990. https://doi.org/10.3389/fpsyg.2022.876990

Fletcher-Watson S. (2024). Reporting participatory methods and author positionality in autism. Autism, 28(8), 1869–1871. https://doi.org/10.1177/13623613241266950

Fletcher-Watson S. Adams J. Brook K. Charman T. Crane L. Cusack J. Leekam S. Milton D. Parr J. R. Pellicano E. (2019). Making the future together: Shaping autism research through meaningful participation. Autism, 23(4), 943–953. https://doi.org/10.1177/1362361318786721

Genovesi E. Ahmed I. Ayele M. Belay W. Burningham O. Chen A. Girma F. Tesfaye Lakew L. Hanlon C. Hoekstra R. A. (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. https://doi.org/10.1371/journal.pone.0307576

Knaak S. Modgill G. Patten S. B. (2014). Key ingredients of anti-stigma programs for health care providers: A data synthesis of evaluative studies. Canadian Journal of Psychiatry. Revue Canadienne de Psychiatrie, 59(10, Suppl. 1), S19–S26. https://doi.org/10.1177/070674371405901s06

Kuper H. Hameed S. Reichenberger V. Scherer N. Wilbur J. Zuurmond M. Mactaggart I. Bright T. Shakespeare T. (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. https://doi.org/10.16993/sjdr.814

Liu F. Begeer S. Hoekstra R. A. Wang C. Scheeren A. M. (2024). Self-reported psychosocial outcomes of autistic adults living in China and the Netherlands. Autism in Adulthood. Advance online publication. https://doi.org/10.1089/aut.2024.0073

National Institute for Health and Care Research. (2019). Taking stock–NIHR public involvement and engagement. https://www.nihr.ac.uk/taking-stock-nihr-public-involvement-and-engagement

Nicolaidis C. Raymaker D. Kapp S. K. Baggs A. Ashkenazy E. McDonald K. Weiner M. Maslak J. Hunter M. Joyce A. (2019). The AASPIRE practice-based guidelines for the inclusion of autistic adults in research as co-researchers and study participants. Autism, 23(8), 2007–2019. https://doi.org/10.1177/1362361319830523

Pickard H. Pellicano E. den Houting J. Crane L. (2022). Participatory autism research: Early career and established researchers’ views and experiences. Autism, 26(1), 75–87. https://doi.org/10.1177/13623613211019594

Rai S. Gurung D. Kohrt B. (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. https://doi.org/10.1017/gmh.2023.73

Szlamka Z. Ahmed I. Genovesi E. Kinfe M. Hoekstra R. A. Hanlon C. (2023). Conceptualising the empowerment of caregivers raising children with developmental disabilities in Ethiopia: A qualitative study. BMC Health Services Research, 23(1), Article 1420. https://doi.org/10.1186/s12913-023-10428-4

Tan D. W. Crane L. Haar T. Heyworth M. Poulsen R. Pellicano E. (2024). Reporting community involvement in autism research: Findings from the journal Autism. Autism: The International Journal of Research and Practice. https://doi.org/10.1177/13623613241275263

Tekola B. Baheretibeb Y. Roth I. Tilahun D. Fekadu A. Hanlon C. Hoekstra R. A. (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. https://doi.org/10.1017/gmh.2016.17

Tekola B. Kinfe M. Girma F. Hanlon C. Hoekstra R. A. (2020). Perceptions and experiences of stigma among parents of children with developmental disorders in Ethiopia: A qualitative study. Social Science & Medicine (1982), 256, 113034. https://doi.org/10.1016/j.socscimed.2020.113034

Thornicroft G. Mehta N. Clement S. Evans-Lacko S. Doherty M. Rose D. Koschorke M. Shidhaye R. O’Reilly C. Henderson C. (2016). Evidence for effective interventions to reduce mental-health-related stigma and discrimination. The Lancet, 387(10023), 1123–1132. https://doi.org/10.1016/S0140-6736(15)00298-6