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Otizm Araştırmaları Perspektifinden Katılımlı Araştırma Yöntemleri

Year 2025, Volume: 9 Issue: 1, 83 - 95, 30.06.2025
https://doi.org/10.31461/ybpd.1679305

Abstract

ÖZ
Bu makalede, bilimsel araştırma sürecine katılımlı araştırma yöntemlerinin entegre edilmesinin öneminden bahsedilmektedir. Katılımlı araştırma yöntemi, araştırılan olguyla direkt veya dolaylı yönden ilişkili hedef kitlenin—bu, otizm araştırmaları özelinde, otistik topluluk anlamına gelmektedir—araştırma sürecine dahil edilmesi şeklinde tanımlanabilir. Bu makalede, katılımlı araştırma yaklaşımının temel unsurları ve bir araştırma sürecinde (araştırma sorusu belirleme, araştırmanın tasarlanması, veri toplama ve araştırma bulgularının yayımlanması gibi) nasıl uygulanabileceği adım adım anlatılmaktadır. Otistik topluluktan oluşan özne-danışma komiteleri ile bu olguyu bizzat deneyimleyenlerden danışmanlık alınması, katılımlı araştırma yöntemine örnek bir strateji olarak sunulmuştur. Katılımlı araştırma yönteminin, araştırmaların kalitesini artırarak araştırma bulgularının uygulamaya çevrilmesini kolaylaştırdığı, otizm topluluğuna anlamlı faydalar sağladığı ve araştırmacılar ile otistik topluluk arasındaki güç dengesizliğini azaltıp iş birliği, etkileşim ve güveni artırdığı vurgulanmaktadır.

Thanks

Bu makale üzerindeki yorum ve görüşleri için Otizm Çalışmaları Özne Danışma Komitesi’nden Hazan Özturan’a ve Didenur Boyacı’ya katkıları ve emeklerinden dolayı teşekkür ederiz.

References

  • Adams, D., Heussler, H., & Gray, K.M. (2018). Behavioural phenotypes: Working towards translational research through research partnerships. Journal of Intellectual Disability Research, 62(8), 661-663.
  • Arnstein, S.R. (1969). A ladder of citizen participation. Journal of the American Institute of Planners, 35(4), 216-224.
  • Atalay, S. (2010). ‘We don’t talk about Çatalhöyük, we live it’: Sustainable archaeological practice through community-based participatory research. World Archaeology, 42(3), 418-429.
  • Autistica. (2016). Top 10 research priorities. autistica.org.uk/our-research/your-research-priorities
  • Botha, M. (2021). Academic, activist, or advocate? Angry, entangled, and emerging: A critical reflection on autism knowledge production. Frontiers in Psychology, 12.
  • Cornwall, A., & Jewkes, R. (1995). What is participatory research? Social Science and Medicine, 41(12), 1667-1676.
  • Crane, L., Adams, F., Harper, G., Welch, J., & Pellicano, E. (2019). ‘Something needs to change’: Mental health experiences of young autistic adults in England. Autism, 23(2), 477-493.
  • Den Houting, J., Higgins, J., Isaacs, K., Mahony, J., & Pellicano, E. (2021). ‘I’m not just a guinea pig’: Academic and community perceptions of participatory autism research. Autism, 25(1), 148-163.
  • 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.
  • Gillespie-Lynch, K., Bisson, J.B., Saade, S., Obeid, R., Kofner, B., Harrison, A.J., Daou, N., Tricarico, N., Santos, J.D., Pinkava, W., & Jordan, A. (2022). If you want to develop an effective autism training, ask autistic students to help you. Autism, 26(5), 1082-1094.
  • Gillespie-Lynch, K., Kapp, S., Brooks, P., Pickens, J., & Schwartzman, B. (2017). Whose expertise is it? Evidence for autistic adults as critical autism experts. Frontiers in Psychology, 8.
  • Gowen, E., Taylor, R., Bleazard, T., Greenstein, A., Baimbridge, P., & Poole, D. (2019). Guidelines for conducting research studies with the autism community. Autism Policy & Practice, 2(1 A new beginning), 29-45.
  • Hobson, H., Linden, A., Crane, L., & Kalandadze, T. (2023). Towards reproducible and respectful autism research: Combining open and participatory autism research practices. Research in Autism Spectrum Disorders, 106, 102196.
  • Israel, B.A., Schulz, A.J., Parker, E.A., & Becker, A.B. (1998). Review of community-based research: Assessing partnership approaches to improve public health. Annual Review of Public Health, 19(1), 173-202.
  • Keating, C.T. (2021). Participatory autism research: How consultation benefits everyone. Frontiers in Psychology, 12, 713982.
  • Keating, C.T., Hickman, L., Leung, J., Monk, R., Montgomery, A., Heath, H., & Sowden, S. (2023). Autism‐related language preferences of English‐speaking individuals across the globe: A mixed methods investigation. Autism Research, 16(2), 406-428.
  • Kütük-Yılmaz, P. (2021). Gençlerle yürütülen PhotoVoice projeleri: Katılımlı bir araştırma yöntemi. OPUS Uluslararası Toplum Araştırmaları Dergisi, 17(33), 174-192.
  • Lincoln, Y.S., Lynham, S.A., & Guba, E.G. (2011). Paradigmatic controversies, contradictions, and emerging confluences, revisited. In: N.K. Denzin & Y.S. Lincoln (Ed.), The SAGE handbook of qualitative research (4. ed., pp.97-128).
  • Macaroğlu-Akgül, E. (2023). Toplum temelli katılımcı araştırma. İçinde S. Toraman-Türk (Ed.), Sosyal Bilimlerde nitel araştırmalar ve eylem araştırmaları (ss.121-143). Pegem Akademi.
  • Merter, S., & Hasırcı, D. (2018). A participatory product design process with children with autism spectrum disorder. CoDesign, 14(3), 170-187.
  • Milton, D.E. (2014). Autistic expertise: A critical reflection on the production of knowledge in autism studies. Autism, 18(7), 794-802.
  • Milton, D., Moore, A., & Martin, N. (2025). From humble beginnings: Reflections on 10 years of the Participatory Autism Research Collective. Autism, 29(4), 827-828.
  • 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.
  • Pavlopoulou, G. (2020). A good night’s sleep: Learning about sleep from autistic adolescents’ personal accounts. Frontiers in Psychology, 11, 583868.
  • Pellicano, E., Laura Crane, & Gaudion, K. (2017). Participatory autism research: A starter pack. London: UCL Institute of Education.
  • 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.
  • Raymaker, D., & Nicolaidis, C. (2013). Participatory research with autistic communities. Worlds of Autism: Across The Spectrum of Neurological Difference, 169-188.
  • Sage Journals. (2025). Submission guidelines: Autism. journals.sagepub.com /author-instructions/aut
  • Wallerstein, N.B., & Duran, B. (2006). Using community-based participatory research to address health disparities. Health Promotion Practice, 7(3), 312-323.

Participatory Research Methods from the Perspective of Autism Studies

Year 2025, Volume: 9 Issue: 1, 83 - 95, 30.06.2025
https://doi.org/10.31461/ybpd.1679305

Abstract

ABSTRACT
This article discusses the importance of integrating participatory research methods into scientific research process. Participatory research methods can be defined as involving the target group, which is directly or indirectly related to the phenomenon being studied—specifically, in autism research, this refers to the autistic community—in the research process. The article provides the key elements of the participatory research approach and how it can be applied in various stages of a research process (such as defining the research question, designing the research, data collection, and publishing research findings) step-by-step. Consulting with subject-advisory committees, consisting of members from the autistic community, meaning seeking advice from those who have personally experienced the phenomenon, is presented as an example strategy for participatory research methods. This article emphasizes that participatory research methods enhance the quality of research, facilitate the translation of research findings into practice, provide meaningful benefits to the autism community, and reduce the power imbalance between researchers and the autistic community while increasing collaboration, interaction, and trust.

References

  • Adams, D., Heussler, H., & Gray, K.M. (2018). Behavioural phenotypes: Working towards translational research through research partnerships. Journal of Intellectual Disability Research, 62(8), 661-663.
  • Arnstein, S.R. (1969). A ladder of citizen participation. Journal of the American Institute of Planners, 35(4), 216-224.
  • Atalay, S. (2010). ‘We don’t talk about Çatalhöyük, we live it’: Sustainable archaeological practice through community-based participatory research. World Archaeology, 42(3), 418-429.
  • Autistica. (2016). Top 10 research priorities. autistica.org.uk/our-research/your-research-priorities
  • Botha, M. (2021). Academic, activist, or advocate? Angry, entangled, and emerging: A critical reflection on autism knowledge production. Frontiers in Psychology, 12.
  • Cornwall, A., & Jewkes, R. (1995). What is participatory research? Social Science and Medicine, 41(12), 1667-1676.
  • Crane, L., Adams, F., Harper, G., Welch, J., & Pellicano, E. (2019). ‘Something needs to change’: Mental health experiences of young autistic adults in England. Autism, 23(2), 477-493.
  • Den Houting, J., Higgins, J., Isaacs, K., Mahony, J., & Pellicano, E. (2021). ‘I’m not just a guinea pig’: Academic and community perceptions of participatory autism research. Autism, 25(1), 148-163.
  • 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.
  • Gillespie-Lynch, K., Bisson, J.B., Saade, S., Obeid, R., Kofner, B., Harrison, A.J., Daou, N., Tricarico, N., Santos, J.D., Pinkava, W., & Jordan, A. (2022). If you want to develop an effective autism training, ask autistic students to help you. Autism, 26(5), 1082-1094.
  • Gillespie-Lynch, K., Kapp, S., Brooks, P., Pickens, J., & Schwartzman, B. (2017). Whose expertise is it? Evidence for autistic adults as critical autism experts. Frontiers in Psychology, 8.
  • Gowen, E., Taylor, R., Bleazard, T., Greenstein, A., Baimbridge, P., & Poole, D. (2019). Guidelines for conducting research studies with the autism community. Autism Policy & Practice, 2(1 A new beginning), 29-45.
  • Hobson, H., Linden, A., Crane, L., & Kalandadze, T. (2023). Towards reproducible and respectful autism research: Combining open and participatory autism research practices. Research in Autism Spectrum Disorders, 106, 102196.
  • Israel, B.A., Schulz, A.J., Parker, E.A., & Becker, A.B. (1998). Review of community-based research: Assessing partnership approaches to improve public health. Annual Review of Public Health, 19(1), 173-202.
  • Keating, C.T. (2021). Participatory autism research: How consultation benefits everyone. Frontiers in Psychology, 12, 713982.
  • Keating, C.T., Hickman, L., Leung, J., Monk, R., Montgomery, A., Heath, H., & Sowden, S. (2023). Autism‐related language preferences of English‐speaking individuals across the globe: A mixed methods investigation. Autism Research, 16(2), 406-428.
  • Kütük-Yılmaz, P. (2021). Gençlerle yürütülen PhotoVoice projeleri: Katılımlı bir araştırma yöntemi. OPUS Uluslararası Toplum Araştırmaları Dergisi, 17(33), 174-192.
  • Lincoln, Y.S., Lynham, S.A., & Guba, E.G. (2011). Paradigmatic controversies, contradictions, and emerging confluences, revisited. In: N.K. Denzin & Y.S. Lincoln (Ed.), The SAGE handbook of qualitative research (4. ed., pp.97-128).
  • Macaroğlu-Akgül, E. (2023). Toplum temelli katılımcı araştırma. İçinde S. Toraman-Türk (Ed.), Sosyal Bilimlerde nitel araştırmalar ve eylem araştırmaları (ss.121-143). Pegem Akademi.
  • Merter, S., & Hasırcı, D. (2018). A participatory product design process with children with autism spectrum disorder. CoDesign, 14(3), 170-187.
  • Milton, D.E. (2014). Autistic expertise: A critical reflection on the production of knowledge in autism studies. Autism, 18(7), 794-802.
  • Milton, D., Moore, A., & Martin, N. (2025). From humble beginnings: Reflections on 10 years of the Participatory Autism Research Collective. Autism, 29(4), 827-828.
  • 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.
  • Pavlopoulou, G. (2020). A good night’s sleep: Learning about sleep from autistic adolescents’ personal accounts. Frontiers in Psychology, 11, 583868.
  • Pellicano, E., Laura Crane, & Gaudion, K. (2017). Participatory autism research: A starter pack. London: UCL Institute of Education.
  • 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.
  • Raymaker, D., & Nicolaidis, C. (2013). Participatory research with autistic communities. Worlds of Autism: Across The Spectrum of Neurological Difference, 169-188.
  • Sage Journals. (2025). Submission guidelines: Autism. journals.sagepub.com /author-instructions/aut
  • Wallerstein, N.B., & Duran, B. (2006). Using community-based participatory research to address health disparities. Health Promotion Practice, 7(3), 312-323.
There are 29 citations in total.

Details

Primary Language Turkish
Subjects Psychological Methodology, Design and Analysis
Journal Section Review
Authors

Elif Baştan 0000-0002-7870-7933

Submission Date April 18, 2025
Acceptance Date June 21, 2025
Early Pub Date June 21, 2025
Publication Date June 30, 2025
Published in Issue Year 2025 Volume: 9 Issue: 1

Cite

APA Baştan, E. (2025). Otizm Araştırmaları Perspektifinden Katılımlı Araştırma Yöntemleri. Yaşam Becerileri Psikoloji Dergisi, 9(1), 83-95. https://doi.org/10.31461/ybpd.1679305