1,853
Views
14
CrossRef citations to date
0
Altmetric
Research Article

Working together: experiences of people with aphasia as co-researchers in participatory health research studies

ORCID Icon, , &
Received 25 Nov 2020, Accepted 15 Apr 2021, Published online: 25 Jun 2021

References

  • Ali, K., Roffe, C., & Crome, P. (2006). What patients want: Consumer involvement in the design of a randomized controlled trial of routine oxygen supplementation after acute stroke. Stroke, 37(3), 865–871. https://doi.org/10.1161/01.STR.0000204053.36966.80
  • Baum, F. (2006). Participatory action research. Journal of Epidemiology and Community Health, 60(10), 854–857. https://doi.org/10.1136/jech.2004.028662
  • Braun, V., & Clarke, V. (2013). Successful qualitative research: A practical guide for beginners. Sage.
  • Chambers, R. (1994a). Participatory Rural Appraisal (PRA): Challenges, potentials and paradigm. World Development, 22(10), 1437–1454. https://doi.org/10.1016/0305-750X(94)90030-2
  • Chambers, R. (2004). Participatory workshops: A sourcebook of 21 sets of ideas and activities. Earthscan.
  • Cornwall, A., & Jewkes, R. (1995). What is participatory research? Social Science & Medicine, 41(12), 1667–1676. https://doi.org/10.1016/0277-9536(95)00127-S
  • de Brún, T., O’reilly - de Brún, M., Van Weel-Baumgarten, E., Burns, N., Dowrick, C., Lionis, C., O’Donnell, C., Mair, F. S., Papadakaki, M., Saridaki, A., Spiegel, W., Van Weel, C., Van Den Muijsenbergh, M., & MacFarlane, A. (2017). Using Participatory Learning & Action (PLA) research techniques for inter-stakeholder dialogue in primary healthcare: An analysis of stakeholders’ experiences. Research Involvement and Engagement, 3(1), 28. https://doi.org/10.1186/s40900-017-0077-8
  • Domecq, J. P., Prutsky, G., Elraiyah, T., Wang, Z., Nabhan, M., Shippee, N., Brito, J. P., Boehmer, K., Hasan, R., Firwana, B., Erwin, P., Eton, D., Sloan, J., Montori, V., Asi, N., Dabrh, A. M., & Murad, M. H. (2014). Patient engagement in research: A systematic review. BMC Health Service Research, 14(1), 89. https://doi.org/10.1186/1472–6963–14–89
  • Freire, P. (1970). Pedagogy of the oppressed. Penguin Books.
  • Gaventa, J., & Cornwall, A. (2006). Challenging the boundaries of the possible: Participation, knowledge, and power. IDS Bulletin, 37(6), 122–128. https://doi.org/https://doi.org/10.1111/j.1759-5436.2006.tb00329.x
  • Hersh, D., Israel, M., & Shiggins, C. (2021). The ethics of patient and public involvement across the research process: towards partnership with people with aphasia. Aphasiology, 1–27. https://doi.org/https://doi.org/10.1080/02687038.2021
  • Horton, S., Barston, D., Barnston, J., Bell, C., Bell, J., Coath, C., Duffy, I., Isaksen, J., & Watson, L. (2021). In it for the long haul: A reflective account of collaborative involvement in aphasia research and education (in press). Aphasiology. doi:10.1080/02687038.2021.1907296
  • International Collaboration for Participatory Health Research (ICPHR). (2013). Position paper 1: What is participatory health research? Version: Mai2013. International Collaboration for Participatory Health Research.
  • Irish Health Research Forum. (2015). Public and patient involvement (PPI) in research. Retrieved 17th May 2021, https://859556ce-4d33-4b82-be63-d48940ba7029.filesusr.com/ugd/75eae6_5ee17a6102544c3c8119362d36bb751b.pdf
  • Jagosh, J., Macaulay, A. C., Pluye, P., Salsberg, J. O. N., Bush, P. L., Henderson, J., Sirett, E., Wong, G., Cargo, M., Herbert, C. P., Seifer, S. D., Green, L. W., & Greenhalgh, T. (2012). Uncovering the benefits of participatory research: Implications of a realist review for health research and practice. The Milbank Quarterly, 90(2), 311–346. https://doi.org/10.1111/j.1468-0009.2012.00665.x
  • Kagan, A., Black, S., Duchan, J., Simmons-Mackie, N., & Square, P. (2001). Training volunteers as conversation partners using supported conversation for adults with aphasia (SCA): A controlled trial. Journal of Speech, Language and Hearing Research, 44(3), 624–638. https://doi.org/10.1044/1092-4388(2001/051)
  • Koch, T., & Kralik, D. (2006). Participatory action research in health care. Blackwell Publishing.
  • Leung, M. W. (2004). Community based participatory research: A promising approach for increasing epidemiology’s relevance in the 21st century. International Journal of Epidemiology, 33(3), 499–506. https://doi.org/10.1093/ije/dyh010
  • Macaulay, A. C., Commanda, L. E., Freeman, W. L., Gibson, N., McCabe, M. L., Robbins, C. M., & Twohig, P. L. (1999). Participatory research maximises community and lay involvement. North American primary care research group. British Medical Journal, 319(7212), 774–778. https://doi.org/10.1136/bmj.319.7212.774
  • MacFarlane, A., de Brún, M., de Brún, T., Dowrick, C., O’Donnell, K., Mair, F., Spiegel, W., Muijsenbergh, M., Baumgarten, E., Lionis, C., & Clissmann, C. (2014). Healthcare for migrants, participatory health research and implementation science—better health policy and practice through inclusion. The RESTORE project. European Journal of General Practice, 20(2), 148–152. https://doi.org/10.3109/13814788.2013.868432
  • Mc Menamin, R. (2016). Evaluating conversation partner programmes: Perspectives of people with aphasia [Unpublished doctoral dissertation]. National University of Ireland.
  • Mc Menamin, R., & Pound, C. (2019). Participatory approaches in communication disorders research p175. In R. Lyons & L. McAllister (Eds.), Qualitative research in communication disorders: An introduction for students and clinicians. J & R Press.
  • Mc Menamin, R., Tierney, E., & Mac Farlane, A. (2015a). Who decides what criteria are important to consider in exploring the outcomes of Conversation approaches? A participatory health research study. Aphasiology, 29(8), 914–938. https://doi.org/10.1080/02687038.2015
  • McMenamin, R., Isaksen, J., Pound, C., Cruice, M., Dipper, L., Pearl, J., Horton, S., Palmer, R., & Shiggins, C. (in press). Researchers’ experiences of collaborative research with people with aphasia: An auto-ethnography. Aphasiology.
  • McMenamin, R., Tierney, E., & MacFarlane, A. (2015b). Addressing the long term impacts of aphasia: How far does the conversation partner programme go? Aphasiology, 29(8), 889–913. https://doi.org/10.1080/02687038.2015.1004155
  • Nind, M., & Vinha, H. (2016). Creative interactions with data: Using visual and metaphorical devices in repeated focus groups. Qualitative Research, 16(1), 9–26. https://doi.org/10.1177/1468794114557993
  • O’Reilly-de Brún, M., & de Brún, T. (2010). The use of Participatory Learning & Action (PLA) research in intercultural health: Some examples and some questions. Translocations: Migration & Social Change, 6(1), 1–10
  • O’Reilly-de Brún, M., de Brún, T., Okonkwo, E., Bonsenge-Bokanga, J. S., De Almeida Silva, M. M., Ogbebor, F., Mierzejewska, A., Nnadi, L., van Weel-baumgarten, E., van Weel, C., van den Muijsenbergh, M., & MacFarlane, A. (2016). Using participatory learning & action research to access and engage with ‘hard to reach’ migrants in primary healthcare research. BMC Health Services Research, 16(1), 25. https://doi.org/10.1186/s12913-015-1247-8
  • O’Reilly-de Brún, M., MacFarlane, A., de Brún, T., Okonkwo, E., Bonsenge Bokanga, J. S., Manuela De Almeida Silva, M., Ogbebor, F., Mierzejewska, A., Nnadi, L., van den Muijsenbergh, M., Van Weel-baumgarten, E., & van Weel, C. (2015). Involving migrants in the development of guidelines for communication in cross-cultural general practice consultations: A participatory learning and action research project. BMJ Open, 5(9), e007092. https://doi.org/10.1136/bmjopen–2014-007092
  • Parr, S. (2007). Living with severe aphasia: Tracking social exclusion. Aphasiology, 21(1), 98‒ 123. https://doi.org/10.1080/02687030600798337
  • Pound, C. (2013). An exploration of the friendship experiences of working-age adults with aphasia [Unpublished doctoral dissertation]. Brunel University.
  • Pound, C., Duchan, J., Penman, T., Hewitt, A., & Parr, S. (2007). Communication access to organisations: Inclusionary practices for people with aphasia. Aphasiology, 21(21), 23–38. https://doi.org/10.1080/02687030600798212
  • Rix, J., Carrizosa, H. G., Seale, J., Sheehy, K., & Hayhoe, S. (2020). The while of participation: A systematic review of participatory research involving people with sensory impairments and/or intellectual impairments. Disability & Society, 35(7), 1031–1057. https://doi.org/10.1080/09687599.2019.1669431
  • Rose, T. A., Worrall, L. E., Hickson, L. M., & Hoffmann, T. C. (2012). Guiding principles for printed education materials: Design preferences of people with aphasia. International Journal of Speech-Language Pathology, 14(1), 11–23. https://doi.org/10.3109/17549507.2011.631583
  • Schneider, B., Scissons, H., Arney, L., Benson, G., Derry, J., Lucas, K., Sunderland, M., Nickerson, D., & Sunderland, M. (2004). Communication between people with schizophrenia and their medical professionals: A participatory research project. Qualitative Health Research, 14(4), 562–577. https://doi.org/10.1177/1049732303262423
  • Seale, J., Nind, M., Tilley, L., & Chapman, R. (2015). Negotiating a third space for participatory research with people with learning disabilities: An examination of boundaries and spatial practices. Innovation: The European Journal of Social Science Research, 28(4), 483–497. https://doi.org/10.1080/13511610.2015.1081558
  • Shiggins, C., Doe, D., & Gilbert, L. (in press). The aphasia research collaboration & Mares, K. development of an ‘aphasia accessible patient research experience survey’ through co-production. Aphasiology.
  • Staniszewska, S. (2009). Patient and public involvement in health services and health research: A brief overview of evidence, policy and activity. Journal of Research in Nursing, 14(4), 295–298. https://doi.org/10.1177/1744987109106811
  • Teunissen, E., Gravenhorst, K., Dowrick, C., Van Weel-Baumgarten, E., Van den Driessen Mareeuw, F., de Brún, T., Burns, N., Lionis, C., Mair, F. S., O’Donnell, C., O’reilly-de Brún, M., Papadakaki, M., Saridaki, A., Spiegel, W., Van Weel, C., Van den Muijsenbergh, M., & MacFarlane, A. (2017). Implementing guidelines and training initiatives to improve cross-cultural communication in primary care consultations: A qualitative participatory European study. International Journal for Equity in Health, 16(1), 32. https://doi.org/10.1186/s12939-017-0525-y
  • Todres, L. (2007). Embodied enquiry: Phenomenological touchstones for research psychotherapy and spirituality. Palgrave Macmillan.