509
Views
0
CrossRef citations to date
0
Altmetric
Articles

Lived experiences of participation in mental health research in Canada: breaking the glass wall

, &
Pages 591-611 | Received 10 Apr 2020, Accepted 03 Oct 2020, Published online: 14 Oct 2020

References

  • Andriessen, Karl, Karolina Krysinska, Brian Draper, Michael Dudley, and Philip B. Mitchell. 2018. “Harmful or Helpful? A Systematic Review of How Those Bereaved through Suicide Experience Research Participation.” Crisis 39 (5): 364–376. doi:10.1027/0227-5910/a000515.
  • Andrighetti, Heather J., Alicia Semaka, and Jehannine C. Austin. 2017. “Women's Experiences of Participating in a Prospective, Longitudinal Postpartum Depression Study: Insights for Perinatal Mental Health Researchers.” Archives of Women's Mental Health 20 (4): 547–559. doi:10.1007/s00737-017-0744-7.
  • Banfield, Michelle, Rebecca Randall, Mearon O'Brien, Sophie Hope, Amelia Gulliver, Owen Forbes, Alyssa R. Morse, and Kathleen Griffiths. 2018. “Lived Experience Researchers Partnering with Consumers and Carers to Improve Mental Health Research: Reflections from an Australian initiative.” International Journal of Mental Health Nursing 27 (4): 1219–1229. doi:10.1111/inm.12482.
  • Batterham, Philip J., Alison L. Calear, Natacha Carragher, and Matthew Sunderland. 2018. “Prevalence and Predictors of Distress Associated with Completion of an Online Survey Assessing Mental Health and Suicidality in the Community.” Psychiatry Research 262: 348–350. doi:10.1016/j.psychres.2017.08.048.
  • Beauchamp, Tom L., and James F. Childress. 2013. Principles of Biomedical Ethics. 7th. New York: Oxford University Press.
  • Bell, Emily, Eric Racine, Paula Chiasson, Maya Dufourcq-Brana, Laura B. Dunn, Joseph J. Fins, Paul J. Ford, et al. 2014. “Beyond Consent in Research. Revisiting Vulnerability in Deep Brain Stimulation for Psychiatric Disorders.” Cambridge Quarterly of Healthcare Ethics : CQ : The International Journal of Healthcare Ethics Committees 23 (3): 361–368. doi:10.1017/S0963180113000984.
  • Boothroyd, Roger A. 2000. “The Impact of Research Participation on Adults with Severe Mental Illness.” Mental Health Services Research 2 (4): 213–221. doi:10.1023/A:1010112503631.
  • Bracken-Roche, Dearbhail, Emily Bell, Mary Ellen MacDonald, and Eric Racine. 2017. “The Concept of 'Vulnerability' in Research Ethics: An In-Depth Analysis of Policies and Guidelines .” Health Research Policy and Systems 15 (1): 8. doi:10.1186/s12961-016-0164-6.
  • Bracken-Roche, Dearbhail, Emily Bell, and Eric Racine. 2016. “The ‘Vulnerability’ of Psychiatric Research Participants: Why This Research Ethics Concept Needs to Be Revisited.” The Canadian Journal of Psychiatry 61 (6): 335–339. doi:10.1177/0706743716633422.
  • Carel, Havi. 2016. Phenomenology of Illness. New York: Oxford University Press.
  • Carel, Havi, and Ian James Kidd. 2014. “Epistemic Injustice in Healthcare: A Philosophial Analysis.” Medicine, Health Care, and Philosophy 17 (4): 529–540. doi:10.1007/s11019-014-9560-2.
  • Carr, Sarah. 2019. “I Am Not Your Nutter’: A Personal Reflection on Commodification and Comradeship in Service User and Survivor Research.” Disability & Society 34 (7–8): 1140–1153. doi:10.1080/09687599.2019.1608424.
  • Carter, Sarah P., Brooke A. Ammerman, Heather M. Gebhardt, Jonathan Buchholz, and Mark A. Reger. 2020. Crisis: The Journal of Crisis Intervention and Suicide Prevention, 41(5), 367–374.
  • Cascio, M. A., and Eric Racine. 2018. “Person-Oriented Research Ethics: Integrating Relational and Everyday Ethics in Research.” Accountability in Research 25 (3): 170–197. doi:10.1080/08989621.2018.1442218.
  • Cascio, M. Ariel, Jonathan A. Weiss, and Eric Racine. 2020. “Empowerment in Decision-Making for Autistic People in Research.” Disability & Society. https://doi.org/10.1080/09687599.2020.1712189
  • Collins, Pamela Y., Hella von Unger, and Adria Armbrister. 2008. “Church Ladies, Good Girls, and Locas: Stigma and the Intersection of Gender, Ethnicity, Mental Illness, and Sexuality in Relation to HIV Risk.” Social Science & Medicine (1982) 67 (3): 389–397. doi:10.1016/j.socscimed.2008.03.013.
  • Corrigan, Patrick W. 2002. “Empowerment and Serious Mental Illness: Treatment Partnerships and Community Opportunities.” The Psychiatric Quarterly 73 (3): 217–228. doi:10.1023/a:1016040805432.
  • Corrigan, Patrick. 2004. “How Stigma Interferes with Mental Health Care.” The American Psychologist 59 (7): 614–625. doi:10.1037/0003-066X.59.7.614.
  • Crowther, Susan, Pam Ironside, Deb Spence, and Liz Smythe. 2017. “Crafting Stories in Hermeneutic Phenomenology Research: A Methodological Device.” Qualitative Health Research 27 (6): 826–835. doi:10.1177/1049732316656161.
  • Dee-Price, Betty-Jean M., Lorna Hallahan, Diane Nelson Bryen, and Joanne M. Watson. 2020. “Every Voice Counts: Exploring Communication Accessible Research Methods.” Disability & Society : 1–25. https://doi.org/10.1080/09687599.2020.1715924
  • Dresser, Rebecca. 2006. Silent Partners: Human Subjects and Research Ethics. Oxford: Oxford University Press.
  • DuBois, James, M., Beskow, Laura Jean Campbell, Karen Dugosh, David Festinger, Sarah Hartz, Rosalina James, and Charles Lidz. 2012. “Restoring Balance: A Consensus Statement on the Protection of Vulnerable Research Participants.” American Journal of Public Health 102 (12): 2220–2225. doi:10.2105/AJPH.2012.300757.
  • Emanuel, Ezekiel J., David Wendler, and Christine Grady. 2000. “What Makes Clinical Research Ethical?” JAMA 283 (20): 2701–2711. doi:10.1001/jama.283.20.2701.
  • Faulkner, Alison. 2017. “Survivor Research and Mad Studies: The Role and Value of Experiential Knowledge in Mental Health Research.” Disability & Society 32 (4): 500–520.
  • Fisher, Pamela, and Dawn Freshwater. 2014. “Methodology and Mental Illness: Resistance and Restorying.” Journal of Psychiatric and Mental Health Nursing 21 (3): 197–205. doi:10.1111/jpm.12073.
  • Goldstein, Shari E. 2017. “Reflexivity in Narrative Research: Accessing Meaning through the Participant-Researcher Relationship.” Qualitative Psychology 4 (2): 149–164. doi:10.1037/qup0000035.
  • Hasan, Abdalhadi, and Mahmoud Musleh. 2017. “The Impact of an Empowerment Intervention on People with Schizophrenia: Results of a Randomized Controlled Trial.” International Journal of Social Psychiatry 63 (3): 212–223. doi:10.1177/0020764017693652.
  • Jaffe, Anna E., David DiLillo, Lesa Hoffman, Michelle Haikalis, and Rita E. Dykstra. 2015. “Does It Hurt to Ask? A Meta-Analysis of Participant Reactions to Trauma Research.” Clinical Psychology Review 40: 40–56. doi:10.1016/j.cpr.2015.05.004.
  • Johnston, Matthew S. 2020. “‘He Sees Patients as Lesser People’: Exploring Mental Health Service Users' Critiques and Appraisals of Psychiatrists in Canada.” Disability & Society 35 (2): 258–279.
  • Jorm, Anthony F., Claire M. Kelly, and Amy J. Morgan. 2007. “Participant Distress in Psychiatric Research: A Systematic Review.” Psychological Medicine 37 (7): 917–926. doi:10.1017/S0033291706009779.
  • Kidd, Ian James, and Havi Carel. 2017. “Epistemic Injustice and Illness.” Journal of Applied Philosophy 34 (2): 172–190. doi:10.1111/japp.12172.
  • Lajoie, Corinne. 2019. “Being at Home: A Feminist Phenomenology of Disorientation in Illness.” Hypatia 34 (3): 546–569. doi:10.1111/hypa.12476.
  • Lajoie, Corinne, Justine Fortin, and Eric Racine. 2019. “Enriching Our Understanding of Vulnerability through the Experiences and Perspectives of Individuals Living with Mental Illness.” Accountability in Research 26 (7): 439–459. doi:10.1080/08989621.2019.1679121.
  • Lajoie, Corinne, Jelena Poleksic, Dearbhail Bracken-Roche, Mary Ellen MacDonald, and Eric Racine. 2020. “The Concept of Vulnerability in Mental Health Research: A Mixed Methods Study on Researcher Perspectives.” Journal of Empirical Research on Human Research Ethics : JERHRE 15 (3): 128–142. doi:10.1177/1556264620902657.
  • Lakeman, Richard, Sue McAndrew, Liam MacGabhann, Tony Warne. 2013. “‘That Was Helpful … No One Has Talked to Me about That Before’: Research Participation as a Therapeutic Activity.” International Journal of Mental Health Nursing 22 (1): 76–84. doi:10.1111/j.1447-0349.2012.00842.x.
  • Owen, Rebecca, Patricia Gooding, Robert Dempsey, and Steven Jones. 2016. “The Experience of Participation in Suicide Research from the Perspectives of Individuals with Bipolar Disorder.” The Journal of Nervous and Mental Disease. 204(11):840–844.
  • Price, Margaret. 2011. Mad at School: Rhetorics of Mental Disability and Academic Life. Ann Arbor, MI: The University of Michian Press.
  • Racine, Eric, and Dearbhail Bracken-Roche. 2019. “Enriching the Concept of Vulnerability in Research Ethics: An Integrative and Functional account.” Bioethics 33 (1): 19–34. doi:10.1111/bioe.12471.
  • Russo, Jasna, and Peter Beresford. 2015. “Between Exclusion and Colonisation: Seeking a Place for Mad People's Knowledge in Academia.” Disability & Society 30 (1): 153–157. doi:10.1080/09687599.2014.957925.
  • Sankary, Lauren R., and Paul J. Ford. 2019. “Ongoing Consent in Situations of Cognitive Vulnerability: Special Considerations in Implanted Neural Device Trials.” In Research Involving Participants with Cognitive Disability and Difference: Ethics, Autonomy, Inclusion, and Innovation, edited by M. Ariel Cascio and Eric Racine, 3–13. New York: Oxford University Press.
  • Sengupta, Sohini, Bernard Lo, Ronald P. Strauss, Joseph Eron, and Allen L. Gifford. 2010. “How Researchers Define Vulnerable Populations in HIV/AIDS Clinical Trials.” AIDS and Behavior 14 (6): 1313–1319. doi:10.1007/s10461-010-9785-x.
  • Slatman, Jenny. 2014a. “Multiple Dimensions of Embodiment in Medical Practices.” Medicine, Health Care, and Philosophy 17 (4): 549–557. doi:10.1007/s11019-014-9544-2.
  • Slatman, Jenny. 2014b. Our Strange Body: Philosophical Reflections on Identity and Medical Interventions. Amsterdam: Amsterdam University Press.
  • Taylor, Peter James, Yvonne Awenat, Patricia Gooding, Judith Johnson, Daniel Pratt, Alex Wood, and Nicholas Tarrier. 2010. “The Subjective Experience of Participation in Schizophrenia Research: A Practical and Ethical Issue.” The Journal of Nervous and Mental Disease 198 (5): 343–348. doi:10.1097/NMD.0b013e3181da8545.
  • Tee, Stephen R., and Judith A. Lathlean. 2004. “The Ethics of Conducting a co-Operative Inquiry with Vulnerable People.” Journal of Advanced Nursing 47 (5): 536–543. doi:10.1111/j.1365-2648.2004.03130.x.
  • West, Michelle L., Philip T. Yanos, and Abby L. Mulay. 2014. “Triple Stigma of Forensic Psychiatric Patients: Mental Illness, Race, and Criminal History.” International Journal of Forensic Mental Health 13 (1): 75–90. doi:10.1080/14999013.2014.885471.
  • Wong, Eunice C., Rebecca L. Collins, Jennifer Cerully, Rachana Seelam, and Beth Roth. 2017. “Racial and Ethnic Differences in Mental Illness Stigma and Discrimination among Californians Experiencing Mental Health Challenges.” Rand Health Quarterly 6 (2): 6.
  • Zahavi, Dan, and Kristian M. M. Martiny. 2019. “Phenomenology in Nursing Studies: New Perspectives.” International Journal of Nursing Studies 93: 155–162. doi:10.1016/j.ijnurstu.2019.01.014.

Reprints and Corporate Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

To request a reprint or corporate permissions for this article, please click on the relevant link below:

Academic Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

Obtain permissions instantly via Rightslink by clicking on the button below:

If you are unable to obtain permissions via Rightslink, please complete and submit this Permissions form. For more information, please visit our Permissions help page.