Publication Cover
Educational Action Research
Connecting Research and Practice for Professionals and Communities
Volume 32, 2024 - Issue 2
1,534
Views
1
CrossRef citations to date
0
Altmetric
Research Article

Working together as scientific and experiential experts: how do current ethical PAR-principles work in a research team with young adults with Developmental Language Disorder?

ORCID Icon, , & ORCID Icon
Pages 311-326 | Received 06 Apr 2022, Accepted 13 Jun 2022, Published online: 06 Oct 2022

References

  • Abma, T., S. Banks, T. Cook, S. Dias, W. Madsen, J. Springett, and M. T. Wright. 2019. Participatory Research for Health and Social well-being. Cham: Springer International Publishing.
  • Aussems, K., J. Isarin, A. Niemeijer, and C. Dedding “(Manuscript Submitted for Publication). Stumbling Towards Independent Living: Participatory Action Research with Young Adults with Developmental Language Disorder”.
  • Balcazar, F. E., C. B. Keys, D. L. Kaplan, and Y. Suarez-Balcazar. 1998. “Participatory Action Research and People with Disabilities: Principles and Challenges.” Canadian Journal of Rehabilitation 12 (2): 105–112.
  • Banks, S., A. Armstrong, K. Carter, H. Graham, P. Hayward, A. Henry, … A. Strachan. 2013. “Everyday Ethics in community-based Participatory Research.” Contemporary Social Science 8 (3): 263–277. doi:10.1080/21582041.2013.769618.
  • Banks, S., and M. Brydon-Miller. 2019. Ethics in Participatory Research for Health and Social well-being Cases and Commentaries. London: Routledge.
  • Boylan, A. M., L. Locock, R. Thomson, and S. Staniszewska. 2019. ““About Sixty per Cent I Want to Do It”: Health Researchers’ Attitudes To, and Experiences Of, Patient and Public Involvement (Ppi)—a Qualitative Interview Study.” Health Expectations 22 (4): 721–730. doi:10.1111/hex.12883.
  • Bradbury, H. 2015. The Sage Handbook of Action Research. 3rd ed. Sage.
  • Centre for Social Justice and Community Action; National Co-ordinating Centre for Public Engagement. 2012. Community-based Participatory Research. A Guide to Ethical Principles and Practice.
  • Conti‐Ramsden, G., K. Durkin, U. Toseeb, N. Botting, and A. Pickles. 2017. “Education and Employment Outcomes of Young Adults with a History of Developmental Language Disorder.” International Journal of Language & Communication Disorders 53 (2): 237–255. doi:10.1111/1460-6984.12338.
  • Dedding, C. 2013. Kinderen En Jongeren Actief in Wetenschappelijk Onderzoek: Ethiek, Methoden En Resultaten van Onderzoek Met En Door Jeugd. Houten: Lannoo Campus.
  • Dedding, C., N. S. Goedhart, J. E. Broerse, and T. A. Abma. 2020. “Exploring the Boundaries of ‘Good’ Participatory Action Research in Times of Increasing Popularity: Dealing with Constraints in Local Policy for Digital Inclusion.” Educational Action Research 29 (1): 20–36. doi:10.1080/09650792.2020.1743733.
  • Dedding, C., B. Groot, M. Slager, and T. Abma. 2022. “Building an Alternative Conceptualization of Participation: From Shared Decision-making to Acting and Work.” In Educational Action Research, 1–13.
  • Freire, P. 1982. “Creating Alternative Research Methods: Learning to Do It by Doing It.” In Creating Knowledge: A Monopoly? Participatory Research in Development, edited by B. Hall, A. Gillette, and R. Tandon, 29–37. Toronto: Participatory Research Network.
  • Gibbs, L, K Marinkovic, A.L Black, B Gladstone, C Dedding, A Dadich, S O’Higgins, et al. 2018. Kids in Action. Participatory Health Research with Children.
  • Greenwood, D. J., and M. Levin. 1998. Introduction to Action Research: Social Research for Social Change. SAGE.
  • Groot, B. C., M. Vink, A. Haveman, M. Huberts, G. Schout, and T. A. Abma. 2018. “Ethics of Care in Participatory Health Research: Mutual Responsibility in Collaboration with co-researchers.” Educational Action Research 27 (2): 286–302. doi:10.1080/09650792.2018.1450771.
  • Hersh, D., M. Israel, and C Shiggins. 2021. “The Ethics of Patient and Public Involvement across the Research Process: Towards Partnership with People with Aphasia.” In Aphasiology, 1–27. Taylor \& Francis.
  • International Collaboration for Participatory Health Research (ICPHR). 2013. Position Paper 2: Participatory Health Research. A Guide to Ethical Principles and Practices. Berlin: International Collaboration for Participatory Health Research.
  • Isarin, J. 2012. “SpraakSaam.” In Jongeren Met Een Taalstoornis Spreken Zich uit. Onderzoeksverslag van SpraakSaam-PAR: participatie, ervaringskennis, empowerment.
  • Isarin, J. 2021. “Wat En Wie: Over Classificatie.” Taal En Identiteit. Tijdschrift voor Neurosychologie. Jaargang 16 (2).
  • Keenan, J, F Poland, P Wilson, E Mathie, J Boote, A Varley, H Wythe, et al. 2017. “Research Design Boundaries for Qualitative Research and Patient and Public Involvement, and Why They Matter.” In Qualitative Health Research Network Symposium. 30 Guildford Street, London: UCL, Institute of Child Health WC1N 1EH.
  • Kember, D., T.-S. Ha, B.-H. Lam, A. Lee, J. C. K Yum, J. C. K Yum, and Jessie C.K. Yum. 1997. “The Diverse Role of the Critical Friend in Supporting Educational Action Research Projects.” Educational Action Research 5 (3): 463–481. doi:10.1080/09650799700200036.
  • Law, James Boyle, and A Frances Harris. 2000. “Prevalence and Natural History of Primary Speech and Language Delay: Findings from a Systematic Review of the Literature.” International Journal of Language & Communication Disorders 35 (2): 165–188. doi:10.1080/136828200247133.
  • Leget, C. 2013. “Analyzing Dignity: A Perspective from the Ethics of Care.” Medicine, Health Care and Philosophy 16 (4): 945–952. doi:10.1007/s11019-012-9427-3.
  • Leget, C., I. Van Nistelrooij, and M. Visse. 2017. “Beyond Demarcation: Care Ethics as an Interdisciplinary Field of Inquiry.” Nursing Ethics 26 (1): 17–25. doi:10.1177/0969733017707008.
  • MacFarlane, A., and B. Roche. 2019. “Blurring the Boundaries between Researcher and Researched, Academic and Activist.” In Ethics in Participatory Research for Health and Social well-being Cases and Commentaries, edited by S. Banks and M Brydon-Miller. London: Routledge.
  • Niemeijer, A. 2015. Exploring Good Care with Surveillance Technology in Residential Care for Vulnerable People. VU University Press.
  • Orne, J., and M. M. Bell. 2015. An Invitation to Qualitative Fieldwork: A Multilogical Approach. New York, NY: Routledge.
  • Pols, J. 2010. “The Heart of the Matter. about Good Nursing and Telecare.” Health Care Analysis 18 (4): 374–388. doi:10.1007/s10728-009-0140-1.
  • Reason, P., and H. Bradbury. 2008. The Sage Handbook of Action Research: Participative Inquiry and Practice. (2nd ed. SAGE.
  • Stapleton, A., and P. Mayock. 2022. “Structured Ethical Reflection as A Tool to Recognise and Address Power: A Participatory Action Research Study with Separated Young People in France.” In Educational Action Research, 1–21.
  • Tomblin, J. B., N. L. Records, P. Buckwalter, X. Zhang, E. Smith, and M. O’Brien. 1997. “Prevalence of Specific Language Impairment in Kindergarten Children.” Journal of Speech, Language, and Hearing Research 40 (6): 1245–1260. doi:10.1044/jslhr.4006.1245.
  • Tronto, J. C. 1993. Moral Boundaries: A Political Argument for an Ethic of Care. Routledge.
  • Tronto, J. C. 2013. Caring Democracy: Markets, Equality, and Justice. New York: New York University Press.
  • Vissers, C. T. W. M., J. Isarin, D. Hermans, and I. Jekeli. 2021. Taal in Het Kwadraat: Taalontwikkelingsstoornis: Kinderen Met Tos Beter Begrijpen. Huizen: Pica.
  • Walker, M. U. 2007. Moral Understandings: A Feminist Study in Ethics. Oxford University Press.
  • Willems, D., and J. Pols. 2010. “Goodness! The Empirical Turn in Health Care Ethics.” Medische Antropologie 22 (1): 161–170.