The ethics of patient and public involvement across the research process: towards partnership with people with aphasia

References

• Allen, G., & Ehrlich, C. (2019). We respect you we just don’t need to hear from you any more: Should the consumer and their community participate in research as partners instead of just being subjects? Research Ethics Monthly. 21 June. https://ahrecs.com/research-integrity/we-respect-you-we-just-dont-need-to-hear-from-you-any-more-should-the-consumer-and-their-community-participate-in-research-as-partners-instead-of-just-being-subjects
   Google Scholar
• Arnason, G., & Schroeder, D. (2013). Exploring Central Philosophical Concepts in Benefit Sharing: Vulnerability, Exploitation and Undue Inducement. In D. Schroeder & J. C. Lucas (Eds.), Benefit Sharing: From Biodiversity to Human Genetics (pp. 9–31). Springer.
   Google Scholar
• Australian Institute of Aboriginal and Torres Strait Islander Studies (AIATSIS) (2020). AIATSIS code of ethics for Aboriginal and Torres Strait Islander research. ISBN (ePDF): 9781925302363. https://aiatsis.gov.au/sites/default/files/2020-10/aiatsis-code-ethics.pdf
   Google Scholar
• Banas, J. R., Magasi, S., The, K., & Victorson, D. E. (2019). Recruiting and retaining people with disabilities for qualitative health research: challenges and solutions. Qualitative Health Research, 29(7), 1056–1064. https://doi.org/10.1177/1049732319833361
   PubMed Web of Science ®Google Scholar
• Barnes, C. (2009). An ethical agenda in disability research: Rhetoric or reality. In D. M. Mertens & P. E. Ginsberg (Eds.), Handbook of social research ethics (pp. 458–473). Sage.
   Google Scholar
• Beauchamp, T. L., & Childress, J. F. (2019). Principles of Biomedical Ethics (8th edition ed.). Oxford University Press.
   Google Scholar
• Borrett, S., & Gould, L. J. (2020). Mental capacity assessment with people with aphasia: Understanding the role of the speech and language therapist. Aphasiology, 1–19. https://doi.org/10.1080/02687038.2020.1819954
   Web of Science ®Google Scholar
• Boylan, A.-M., Locock, L., Thomson, R., & Staniszewska, S. (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. https://doi.org/10.1111/hex.12883
   PubMed Web of Science ®Google Scholar
• Brady, M., Fredrick, A., & Williams, B. (2013). People with aphasia: Capacity to consent, research participation and intervention inequalities. International Journal of Stroke, 8(3), 193–196. https://doi.org/10.1111/j.1747-4949.2012.00900.x
   PubMed Web of Science ®Google Scholar
• Braunack-Mayer, A., & Hersh, D. (2001). An ethical voice in the silence of aphasia: Judging understanding and consent in people with aphasia. The Journal of Clinical Ethics, 12 (4), 388–396. PMID: 12026745
   PubMed Web of Science ®Google Scholar
• Brewer, K., Lewis, T., Bond, C., Armstrong, E., Hill, A., Nelson, A., & Coffin, J. (2019). Maintaining cultural integrity in Australian Aboriginal and Māori qualitative research in communication disorder. In R. Lyons & L. McAllister (Eds.), Qualitative research in communication disorders: An introduction for students and clinicians (pp. 407–433). J & R Press Ltd.
   Google Scholar
• Cascella, P. W., & Aliotta, F. (2014). Strategies to enhance the informed consent process for communication disorders researchers. Communication Disorders Quarterly, 35(4), 248–251. https://doi.org/10.1177/1525740114524589
   Web of Science ®Google Scholar
• Castleden, H., Morgan, V. S., & Neimanis, A. (2010). Researchers‘ perspectives on collective/community co-authorship in community-based participatory indigenous research. Journal of Empirical Research on Human Research Ethics, 5(4), 23–32. https://doi.org/10.1525/jer.2010.5.4.23
   PubMed Web of Science ®Google Scholar
• Connell, R. (2011). Southern bodies and disability: Re-thinking concepts. Third World Quarterly, 32(8), 1369–1381. https://doi.org/10.1080/01436597.2011.614799
   Web of Science ®Google Scholar
• Cook, N., Siddiqi, N., Twiddy, M., & Kenyon, R. (2019). Patient and public involvement in health research in low and middle-income countries: A systematic review. BMJ Open, 9(5), e026514. http://dx.doi.org/10.1136/bmjopen-2018-026514
   PubMed Web of Science ®Google Scholar
• Cruice, M., Aujla, S., Bannister, J., Botting, N., Boyle, M., Charles, N., Dhaliwal, V., Grobler, S., Hersh, D., Marshall, J., Morris, S., Pritchard, M., Scarth, L., Talbot, R., & Dipper, L. (in press). Creating a novel approach to discourse treatment through coproduction with people with aphasia and speech and language therapists. Aphasiology.
   Google Scholar
• Dalemans, R., Wade, D. T., Van Den Heuvel, W., & De Witte, L. P. (2009). Facilitating the participation of people with aphasia in research: A description of strategies. Clinical Rehabilitation, 23(10), 948–959. https://doi.org/10.1177/0269215509337197
   PubMed Web of Science ®Google Scholar
• De Wit, M., Beurskens, A., Piskur, B., Stoffers, E., & Moser, A. (2018). Preparing researchers for patient and public involvement in scientific research: Development of a hands-on learning approach through action research. Health Expectations, 21(4), 752–763. https://doi.org/10.1111/hex.12671
   PubMed Web of Science ®Google Scholar
• Department of Health. (2006). Best research for best health: a new national health research strategy. Department of Health. https://www.gov.uk/government/publications/best-research-for-best-health-a-new-national-health-research-strategy
   Google Scholar
• Faden, R. R., & Beauchamp, T. L. (1986). A History and Theory of Informed Consent. Oxford University Press.
   Google Scholar
• Gillam, L., & Guillemin, M. (2018). Reflexivity: Overcoming mistrust between research ethics committees and researchers. In R. Iphofen & M. Tolich (Eds.), The SAGE Handbook of Qualitative Research Ethics (pp. 263–275). Sage.
   Google Scholar
• Gilroy, J., Dew, A., Lincoln, M., Ryall, L., Jensen, H., Taylor, K., Barton, R., McRae, K., & Flood, V. (2018). Indigenous persons with disability in remote Australia: Research methodology and Indigenous community control. Disability & Society, 33(7), 1025–1045. https://doi.org/10.1080/09687599.2018.1478802
   Web of Science ®Google Scholar
• Greenhalgh, T., Hinton, L., Finlay, T., Macfarlane, A., Fahy, N., Clyde, B., & Chant, A. (2019). Frameworks for supporting patient and public involvement in research: Systematic review and co-design pilot. Health Expectations: An International Journal of Public Participation in Health Care and Health Policy, 22(4), 785–801. https://doi.org/10.1111/hex.12888
   PubMed Web of Science ®Google Scholar
• Greenhalgh, T., Jackson, C., Shaw, S., & Janamian, T. (2016). Achieving research impact through co-creation in community-based health services: literature review and case study. The Milbank Quarterly, 94(2), 392–429. https://doi.org/10.1111/1468-0009.12197
   PubMed Web of Science ®Google Scholar
• Hannigan, A. (2018). Public and patient involvement in quantitative health research: A statistical perspective. Health Expectations, 21(6), 939–943. https://doi.org/10.1111/hex.12800
   PubMed Web of Science ®Google Scholar
• Harrison, M. & Palmer, R. (2015). Exploring patient and public involvement in stroke research: A qualitative study. Disability and Rehabilitation, 37(23), 2174–2183.
   PubMed Web of Science ®Google Scholar
• Health Research Authority (HRA). (2020). UK policy framework for health and social care research.Health Research Authority. https://www.hra.nhs.uk/planning-and-improving-research/policies-standards-legislation/uk-policy-framework-health-social-care-research/
   Google Scholar
• Health Research Authority/INVOLVE. (2016). Impact of public involvement on ethical aspects of research. https://www.invo.org.uk/posttypepublication/public-involvement-in-researchimpact-on-ethical-aspects-of-research
   Google Scholar
• Herbert, R., Gregory, E., & Haw, C. (2019). Collaborative design of accessible information with people with aphasia. Aphasiology, 33(12), 1504–1530. https://doi.org/10.1080/02687038.2018.1546822
   Web of Science ®Google Scholar
• Hersh, D. (2014). Participants, researchers and participatory research. Journal of Clinical Practice in Speech-Language Pathology, 16(3), 123–126.
   Google Scholar
• Hersh, D. (2018). From individual to global: Human rights and aphasia. International Journal of Speech-Language Pathology, 20(1), 39–43. https://doi.org/10.1080/17549507.2018.1397749
   PubMed Web of Science ®Google Scholar
• Hersh, D., Newitt, R., & Barnett, F. (2018). Change talk when talk has changed: Theoretical and practical insights into motivational interviewing in aphasia. Aphasiology, 32(sup1), 85–87. https://doi.org/10.1080/02687038.2018.1487003
   Google Scholar
• Hinckley, J., Boyle, E., Lombard, D., & Bartels-Tobin, L. (2014). Towards a consumer-informed research agenda for aphasia: Preliminary work. Disability and Rehabilitation, 36(12), 1042–1050. https://doi.org/10.3109/09638288.2013.829528
   PubMed Web of Science ®Google Scholar
• Horton, S., Barston, D., Barnston, J., Bell, C., Bell, J., Coath, C., Duffy, I., Isaksen, J., & Watson, L. (in press). In it for the long haul: A reflective account of collaborative involvement in aphasia research and education. Aphasiology.
   Google Scholar
• Hugman, R., Pittaway, E., & Bartolomei, L. (2011). When ‘do no harm’ is not enough: the ethics of research with refugees and other vulnerable groups. British Journal of Social Work, 41(7), 1271–1287. https://doi.org/10.1093/bjsw/bcr013
   Web of Science ®Google Scholar
• International Committee of Medical Journal Editors. (2019). Recommendations for the conduct, reporting, editing, and publication of scholarly work in medical journals. http://www.icmje.org/icmje-recommendations.pdf
   Google Scholar
• INVOLVE. (2010). Payment for involvement: A guide for making payments to members of the public actively involved in NHS.
   Google Scholar
• INVOLVE. (n.d.). Welcome to INVOLVE. National Institute for Health Research [NIHR] INVOLVE. Retrieved from November 13, 2020, https://www.invo.org.uk/
   Google Scholar
• Isaksen, J., Mc Menamin, R., Shiggins, C., Horton, S., & Pound, C. (in press). A scoping review of methods and outcomes of PPI in aphasia research, education and clinical development. Aphasiology.
   Google Scholar
• Israel, M. (2015). Research Ethics and Integrity for Social Scientists: Beyond Regulatory Compliance. Sage.
   Google Scholar
• Israel, M., & Fozdar, F. (2019). The ethics of the study of ‘Social Problems’. In A. Marvasti & J. Treviño (Eds.), Researching Social Problems (pp. 188–204). Routledge.
   Google Scholar
• Ives, J., Damery, S., & Redwod, S. (2013). PPI, paradoxes and Plato: Who’s sailing the ship? Journal of Medical Ethics, 39(3), 181–185. https://doi.org/10.1136/medethics-2011-100150
   PubMed Web of Science ®Google Scholar
• Jayes, M., & Palmer, R. (2014). Initial evaluation of the Consent Support Tool: A structured procedure to facilitate the inclusion and engagement of people with aphasia in the informed consent process. International Journal of Speech-Language Pathology, 16(2), 159–168. https://doi.org/10.3109/17549507.2013.795999
   PubMed Web of Science ®Google Scholar
• Jayes, M., Palmer, R., & Enderby, P. (2017). An exploration of mental capacity assessment within acute hospital and intermediate care settings in England: A focus group study. Disability and Rehabilitation, 39(21), 2148–2157. https://doi.org/10.1080/09638288.2016.1224275
   PubMed Web of Science ®Google Scholar
• Kagan, A. (1998). Supported conversation for adults with aphasia: Methods and resources for training conversation partners. Aphasiology, 12(9), 816–830. https://doi.org/10.1080/02687039808249575
   Web of Science ®Google Scholar
• Kagan, A., & Kimelman, M. (1995). Informed Consent in Aphasia Research: Myth or Reality. Clinical Aphasiology, 23, 65–75. http://aphasiology.pitt.edu/id/eprint/1304
   Google Scholar
• Kagan, A., Simmons-Mackie, N., Brenneman Gibson, J., Conklin, J., & Elman, R. J. (2010). Closing the evidence, research, and practice loop: Examples of knowledge transfer and exchange from the field of aphasia. Aphasiology, 24(4), 535–548. https://doi.org/10.1080/02687030902935959
   Web of Science ®Google Scholar
• Kane, I., Lindley, R., Lewis, S., & Sandercock, P. (2006). Impact of stroke syndrome and stroke severity on the process of consent in the Third International Stroke Trial. Cerebrovascular Diseases, 21(5–6), 348–352. https://doi.org/10.1159/000091541
   PubMed Web of Science ®Google Scholar
• Kearns, A., Kelly, H., & Pitt, I. (2020). Rating experience of ICT-delivered aphasia rehabilitation: Co-design of a feedback questionnaire. Aphasiology, 34(3), 319–342. https://doi.org/10.1080/02687038.2019.1649913
   Web of Science ®Google Scholar
• Keenan, J., Poland, F., Boote, J., Howe, A., Wythe, H., Varley, A., Vicary, P., Irvine, L., & Wellings, A. (2019). ‘We’re passengers sailing in the same ship, but we have our own berths to sleep in’: Evaluating patient and public involvement within a regional research programme: An action research project informed by Normalisation Process Theory. PLoS ONE, 14(5), e0215953. https://doi.org/10.1371/journal pone.0215953
   PubMed Web of Science ®Google Scholar
• Klingmann, I., Heckenberg, A., Warner, K., Haerry, D., Hunter, A., May, M., & See, W. (2018). EUPATI and patients in medicines research and development: guidance for patient involvement in ethical review of clinical trials. Frontiers in Medicine, 5, 251. https://doi.org/10.3389/fmed.2018.00251
   PubMed Web of Science ®Google Scholar
• Larsen, J., & McMillin, A. (2011). Ethical issues in the conduct of research at a multidisciplinary clinic. Seminars in Speech and Language, 32(4), 338–346. https://doi.org/10.1055/s-0031-1292759
   PubMedGoogle Scholar
• Liabo K., Boddy K., Burchmore H., Cockcroft, E., & Britten, N. (2018). Clarifying the roles of patients in research. British Journal of Sports Medicine, 53, 1324–1325.
   Google Scholar
• Macklin, R. (2004). Double Standards in Medical Research in Developing Countries. Cambridge University Press.
   Google Scholar
• Mathie, E., Wilson, P., Poland, F., McNeilly, E., Howe, A., Staniszewska, S., Cowe, M., Munday, D., & Goodman, C. (2014). Consumer involvement in health research: A UK scoping and survey. International Journal of Consumer Studies, 38(1), 35–44. https://doi.org/10.1111/ijcs.12072
   Web of Science ®Google Scholar
• Mathie, E., Wythe, H., Munday, D., Millac, P., Rhodes, G., Roberts, N., Smeeton, N., Poland, F., & Jones, F. (2018). Reciprocal relationships and the importance of feedback in patient and public involvement: A mixed methods study. Health Expectations, 21(5), 899–908. https://doi.org/10.1111/hex.12684
   PubMed Web of Science ®Google Scholar
• Mc Menamin, R., & Pound, C. (2019). Participatory approaches in communication disorders research. In: In McAllister, L. & Lyons, R. (Eds.), Qualitative Research in Communication Disorders: An Introduction for Students and Clinicians. (pp.167-191). J & R press. ISBN:978-1-907826-38-2.
   Google Scholar
• Mc Menamin, R., Isaksen, J., Shiggins, C., Horton, P. C., Cruice, S., Dipper, L., M., & Pearl, G. (in press). Working together: Experiences of people with aphasia as co-researchers in participatory health research studies. Aphasiology.
   Google Scholar
• Mc Menamin, R., Tierney, E., & MacFarlane, A. (2018). Using a participatory learning and action (PLA) research approach to involve people with aphasia as co-researchers in service evaluation: An analysis of co-researchers’ experiences. Aphasiology, 32(sup1), 142–144. https://doi.org/10.1080/02687038.2018.1486380
   Google Scholar
• McLaughlin, H. (2009). What’s in a Name: ‘Client’, ‘Patient’, ‘Customer’, ‘Consumer’, ‘Expert by Experience’, ‘Service User’—What’s Next? The British Journal of Social Work, 39(6), 1101–1117. https://doi.org/10.1093/bjsw/bcm155
   Web of Science ®Google Scholar
• Morrow, V., Boddy, J., & Lamb, R. (2014). The ethics of secondary data analysis: Learning from the experience of sharing qualitative data from young people and their families in an international study of childhood poverty. Working Paper. National Centre for Research Methods, Southampton. http://sro.sussex.ac.uk/id/eprint/49123/1/NOVELLA_NCRM_ethics_of_secondary_analysis.pdf
   Google Scholar
• National Health and Medical Research Council. (2007, updated 2018). National Statement on Ethical Conduct in Human Research. National Health and Medical Research Council. https://www.nhmrc.gov.au/about-us/publications/national-statement-ethical-conduct-human-research-2007-updated-2018
   Google Scholar
• National Health and Medical Research Council. (2016). Statement on consumer and community involvement in health and medical research. Consumers Health Forum of Australia. https://www.nhmrc.gov.au/about-us/publications/statement-consumer-and-community-involvement-health-and-medical-research
   Google Scholar
• National Health and Medical Research Council. (2018). Ethical conduct in research with Aboriginal and Torres Strait Islander Peoples and communities: Guidelines for researchers and stakeholders. https://www.nhmrc.gov.au/about-us/resources/ethical-conduct-research-aboriginal-and-torres-strait-islander-peoples-and-communities
   Google Scholar
• National Health and Medical Research Council, Australian Research Council and Universities Australia. (2019). Authorship: A guide supporting the Australian Code for the Responsible Conduct of Research. Commonwealth of Australia. https://www.nhmrc.gov.au/about-us/publications/australian-code-responsible-conduct-research-2018#download
   Google Scholar
• National Institute for Health Research (NIHR). (2015). Going the extra mile: Improving the nation’s health and wellbeing through public involvement in research. http://www.nihr.ac.uk/news/going-the-extra-mile-a-strategic-review-of-74/8*9-+public-involvement-in-the-nationalinstitute-for-health-research/2739
   Google Scholar
• Neate, T., Bourazeri, A., Roper, A., Stumpf, S., & Wilson, S. (2019). Co-created personas: Engaging and empowering users with diverse needs within the design process. In Proceedings of the 2019 CHI conference on human factors in computing systems (pp. 1–12)
   Google Scholar
• Neate, T., Roper, A., Wilson, S., Marshall, J., & Cruice, M. (2020). CreaTable content and tangible interaction in Aphasia. In Proceedings of the 2020 CHI Conference on Human Factors in Computing Systems (pp. 1–14)
   Google Scholar
• Ní Shé, É., Cassidy, J., Davies, C., De Brún, A., Donnelly, S., Dorris, E., Dunne, N., Egan, K., Foley, M., Galvin, M., Harkin, M., Killilea, M., Kroll, T., Lacey, V., Lambert, V., McLoughlin, S., Mitchell, D., Murphy, E., Mwendwa, P., Nicholson, E., & O’Philbin, L. (2020). Minding the gap: Identifying values to enable public and patient involvement at the pre-commencement stage of research projects. Research Involvement and Engagement, 6(1), 46. https://doi.org/10.1186/s40900-020-00220-7
   PubMedGoogle Scholar
• Ocloo, J., & Matthews, R. (2016). From tokenism to empowerment: Progressing patient and public involvement in healthcare improvement. BMJ Quality & Safety, 25(8), 626–632. http://dx.doi.org/10.1136/bmjqs-2015-004839
   PubMed Web of Science ®Google Scholar
• Oliver, M. (1992). Changing the social relations of research production. Disability, Handicap & Society, 7(2), 101–114. https://doi.org/10.1080/02674649266780141
   Google Scholar
• Øye, C., Øvre Sørensen, N., Dahl, H., & Glasdam, S. (2019). Tight ties in collaborative health research puts research ethics on trial? A discussion on autonomy, confidentiality, and integrity in qualitative research. Qualitative Health Research, 29(8), 1227–1235. https://doi.org/10.1177/1049732318822294
   PubMed Web of Science ®Google Scholar
• Pandya-Wood, R., Barron, D. S., & Elliott, J. (2017). A framework for public involvement at the design stage of NHS health and social care research: Time to develop ethically conscious standards. Research Involvement and Engagement, 3,6. https://doi.org/10.1186/s40900-017-0058-y
   Google Scholar
• Papathanasiou, I., & Coppens, P. (2017). Aphasia & Related Neurogenic Communication Disorders (2nd Ed ed.). Cengage.
   Google Scholar
• Pearl, G., & Cruice, M. (2017). Facilitating the involvement of people with aphasia in stroke research by developing communicatively accessible research resources. Topics in Language Disorders, 37(1), 67–84. https://doi.org/10.1097/TLD.0000000000000112
   Web of Science ®Google Scholar
• Penn, C., Armstrong, E., Brewer, K., Purves, B., McAllister, M., Hersh, D., … Lewis, A. (2017). Decolonizing speech-language pathology practice in acquired neurogenic disorders. Perspectives of the ASHA Special Interest Groups, 2(2), 91–99. https://doi.org/10.1044/persp2.SIG2.91
   Google Scholar
• Penn, C., Frankel, T., Watermeyer, J., & Müller, M. (2009). Informed consent and aphasia: Evidence of pitfalls in the process. Aphasiology, 23(1), 3–32. https://doi.org/10.1080/02687030701521786
   Web of Science ®Google Scholar
• Phipps, D., Cummins, J., Pepler, D. J., Craig, W., & Cardinal, S. (2016). The co-produced pathway to impact describes knowledge mobilization processes. Journal of Community Engagement and Scholarship, 9(1). Article 5 https://digitalcommons.northgeorgia.edu/jces/vol9/iss1/5
   Google Scholar
• Price, A., Albarqouni, L., Kirkpatrick, J., Clarke, M., Liew, S. M., Roberts, N., & Burls, A. (2018). Patient and public involvement in the design of clinical trials: An overview of systematic reviews. Journal of Evaluation in Clinical Practice, 24(1), 240–253. https://doi.org/10.1111/jep.12805
   PubMed Web of Science ®Google Scholar
• Rennie, D., & Flanagin, A. (1994). Authorship! Guests, Ghosts, Grafters, and the Two-Sided Coin. JAMA, 271(6), 469–471. https://doi.org/10.1001/jama.271.6.469
   PubMed Web of Science ®Google Scholar
• Rose, T. A., Worrall, L. E., Hickson, L. M., & Hoffmann, T. C. (2011). Aphasia friendly written health information: Content and design characteristics. International Journal of Speech-language Pathology, 13(4), 335–347. https://doi.org/10.3109/17549507.2011.560396
   PubMed Web of Science ®Google Scholar
• Salway, S., Chowbey, P., Such, E., & Ferguson, B. (2015). Researching health inequalities with Community Researchers: Practical, methodological and ethical challenges of an ‘inclusive’ research approach. Research Involvement and Engagement, 1(1), 1–21. https://doi.org/10.1186/s40900-015-0009-4
   PubMedGoogle Scholar
• Scheper-Hughes, N. (2000). Ire in Ireland. Ethnography, 1(1), 117–140. https://doi.org/10.1177/14661380022230660
   Google Scholar
• Scottish Dementia Working Group Research Sub-Group, UK. (2014). Core principles for involving people with dementia in research: Innovative practice. Dementia, 13(5), 680–685. https://doi.org/10.1177/1471301214533255
   PubMedGoogle Scholar
• Shiggins, C., Soskolne, V., Olenik, D., Pearl, G., Haaland-Johansen, L., Isaksen, J., & Horton, S. (2020). Towards an asset-based approach to promoting and sustaining well-being for people with aphasia and their families: An international exploratory study. Aphasiology, 34(1), 70–101. https://doi.org/10.1080/02687038.2018.1548690
   Web of Science ®Google Scholar
• Shiggins, C., Coe, D., Gilbert, L., The Aphasia Research Collaboration & Mares, K. (in press). Development of an ‘Aphasia Accessible Patient Research Experience Survey’ through co-production. Aphasiology.
   Google Scholar
• Shrubsole, K., Worrall, L., & Power, E. (2019). Closing the evidence-practice gaps in aphasia management: Are we there yet? Where has a decade of implementation research taken us? A review and guide for clinicians. Aphasiology, 33(8), 970–995. https://doi.org/10.1080/02687038.2018.1510112
   Web of Science ®Google Scholar
• Sieber, J. E., & Tolich, M. B. (2013). Planning ethically responsible research (2nd ed.). Sage.
   Google Scholar
• Silka, L. (2009). Partnership ethics. In D. M. Mertens & P. E. Ginsberg (Eds.), Handbook of Social Research Ethics (pp. 337–352). Sage.
   Google Scholar
• Simmons-Mackie, N., Worrall, L., Shiggins, C., Isaksen, J., McMenamin, R., Rose, T., Guo, Y. E., & Wallace, S. J. (2020). Beyond the statistics: A research agenda in aphasia awareness. Aphasiology, 34(4), 458–471. https://doi.org/10.1080/02687038.2019.1702847
   Web of Science ®Google Scholar
• Smith, L. T. (2012). Decolonizing methodologies. Research and indigenous peoples (2nd ed.). Zed Books.
   Google Scholar
• Smits, D. W., Van Meeteren, K., Klem, M., Alsem, M., & Ketelaar, M. (2020). Designing a tool to support patient and public involvement in research projects: The Involvement Matrix. Research Involvement and Engagement, 6(1), 30. https://doi.org/10.1186/s40900-020-00188-4
   PubMedGoogle Scholar
• Staley, K. (2013). There is no paradox with PPI in research. Journal of Medical Ethics, 39(3), 186–187. https://doi.org/10.1136/medethics-2012-100512
   PubMed Web of Science ®Google Scholar
• Swaffer, K. (2016). Co-production and engagement of people with dementia: The issue of ethics and creative or intellectual copyright. Dementia (London, England), 15(6), 1319–1325. https://doi.org/10.1177/1471301216659213
   PubMedGoogle Scholar
• Swinburn, K., Parr, S., & Pound, C. (2007). Including people with communication disability in stroke research and consultation. Connect.
   Google Scholar
• Taylor, S., & Balandin, S. (2020). The ethics of inclusion in AAC research of participants with complex communication needs. Scandinavian Journal of Disability Research, 22(1), 108–115. https://doi.org/10.16993/sjdr.637
   Web of Science ®Google Scholar
• Tembo, D., Morrow, E., Worswick, L., & Lennard, D. (2019). Is co-production just a pipe dream for applied health research commissioning? An exploratory literature review. Frontiers in Sociology, 4, 50. https://doi.org/10.3389/fsoc.2019.00050
   PubMedGoogle Scholar
• Tolich, M. (2004). Internal confidentiality: When confidentiality assurances fail relational informants. Qualitative Sociology, 27(1), 101–106. https://doi.org/10.1023/B:QUAS.0000015546.20441.4a
   Google Scholar
• Townend, E., Brady, M., & McLaughlan, K. (2007). Exclusion and inclusion criteria for people with aphasia in studies of depression following stroke: A systematic review and future recommendations. Neuroepidemiology, 29(1–2), 1–17. https://doi.org/10.1159/000108913
   PubMed Web of Science ®Google Scholar
• Tri-Council (Canadian Institutes of Health Research, National Science and Engineering Research Council of Canada, Social Sciences and Humanities Research Council of Canada). (2018). Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans. Public Works and Government Services. https://ethics.gc.ca/eng/policy-politique_tcps2-eptc2_2018.html
   Google Scholar
• United Nations (2007). United Nations declaration on the rights of indigenous peoples. https://www.un.org/development/desa/indigenouspeoples/wp-content/uploads/sites/19/2019/01/UNDRIP_E_web.pdf
   Google Scholar
• Wager, E., & Kleinert, S. (2011). Responsible research publication: International standards for authors. A position statement developed at the 2nd World Conference on Research Integrity, Singapore. T. Mayer & N. Steneck Eds., July 22–24, 2010. Promoting Research Integrity in a Global Environment. Imperial College Press/World Scientific Publishing (pp. 309–316).
   Google Scholar
• Wilson, S., Roper, A., Marshall, J., Galliers, J. R., Devane, N., Booth, T., & Woolf, C. (2015). Codesign for people with aphasia through tangible design languages. CoDesign, 11(1), 21–34. https://doi.org/10.1080/15710882.2014.997744
   Web of Science ®Google Scholar
• World Medical Association (WMA) (2013) Declaration of Helsinki: ethical principles for medical research involving human subjects, as amended by the 64th WMA General Assembly, Fortaleza, Brazil. http://www.wma.net/en/30publications/10policies/b3/
   Google Scholar
• Worrall, L., Sherratt, S., Rogers, P., Howe, T., Hersh, D., Ferguson, A., & Davidson, B. (2011). What people with aphasia want: Their goals according to the ICF. Aphasiology, 25(3), 309–322. https://doi.org/10.1080/02687038.2010.508530
   Web of Science ®Google Scholar
• Wynn, L. L., & Israel, M. (2018). The fetishes of consent: signatures, paper and writing in research ethics review. American Anthropologist, 120(4), 795–806. https://doi.org/10.1111/aman.13148
   Web of Science ®Google Scholar
• Zarb, G. (1992). On the road to Damascus: First steps towards changing the relations of disability research production. Disability, Handicap & Society, 7(2), 125–138. https://doi.org/10.1080/02674649266780161
   Google Scholar