Exploring Empathy and Compassion Using Digital Narratives (the Learning to Care Project): Protocol for a Multiphase Mixed Methods Study

Manuela Ferrari, Sahar Fazeli, Claudia Mitchell, Jai Shah, Srividya N Iyer, Manuela Ferrari, Sahar Fazeli, Claudia Mitchell, Jai Shah, Srividya N Iyer

Abstract

Background: Digital stories-first-person, self-made, 2- to 3-minute videos-generate awareness, impart knowledge, and promote understanding on topics such as mental illness. Digital stories are a narrative-based art form often created by individuals without formal training in filmmaking to relate personal experiences. Somewhat like digital narratives, video testimonies created within the social marketing or fundraising campaigns of government agencies and private or public corporations aim to reduce the stigma of mental illness while supporting research and services. In video testimonies, personal stories are captured on camera by professional filmmakers. Sharing critical life events greatly benefits tellers and listeners alike, supporting catharsis, healing, connectiveness, and citizenship.

Objective: This study explores digital stories and video testimonies featuring mental illness and recovery in their ability to elicit empathy and compassion while reducing stigma among viewers.

Methods: Using mixed methods, phase 1 will involve a search of Canadian social marketing activities and fundraising campaigns concerning mental illness and recovery. Phase 2 will involve the organization of digital storytelling workshops in which participants will create digital stories about their own experiences of mental illness and recovery. In phase 3, a pilot randomized controlled trial will be undertaken to compare marketing and fundraising campaigns with digital stories for their impact on viewers, whereas phase 4 will focus on knowledge dissemination.

Results: Ethics approval for this study was received in March 2021. Data on the feasibility of the study design and the results of the controlled trial will be generated. This study will produce new knowledge on effective ways of promoting mental health awareness and decreasing stigma, with practical importance for future social marketing and fundraising campaigns. The anticipated time for completion within the 2-year study period includes 9 months for phase 1 (knowledge synthesis activities identifying social marketing and fundraising campaigns) and phase 2 (storytelling workshops), 11 months for phase 3 (feasibility assessment and data collection: randomized controlled trial), and 2 months for phase 4 (knowledge dissemination).

Conclusions: The knowledge generated will have practical implications for the public and for future social marketing and fundraising campaigns promoted by government agencies as well as nonprofit and for-profit organizations by enhancing our understanding of how individuals and societies respond to stories of mental distress and what prompts citizens to help others.

Trial registration: ClinicalTrials.gov NCT04881084; https://ichgcp.net/clinical-trials-registry/NCT04881084.

International registered report identifier (irrid): PRR1-10.2196/33525.

Keywords: digital narratives; fundraising campaigns; mixed methods; randomized controlled trial; stigma and discrimination.

Conflict of interest statement

Conflicts of Interest: None declared.

©Manuela Ferrari, Sahar Fazeli, Claudia Mitchell, Jai Shah, Srividya N Iyer. Originally published in JMIR Research Protocols (https://www.researchprotocols.org), 13.01.2022.

Figures

Figure 1
Figure 1
Learning to care project logic model.

References

    1. Boltanski L, Burchell G. Distant Suffering Morality, Media and Politics. Cambridge: Cambridge University Press; 1999.
    1. Höijer B. The discosurse of global compassion and the media. Nordicom Rev. 2003;24(2):19–29. doi: 10.1515/nor-2017-0305.
    1. Baldwin C. Storycatcher Making Sense of Our Lives Through the Power and Practice of Story. Novato, CA: New World Library; 2005.
    1. Wahl OF. Mass media images of mental illness: a review of the literature. J Community Psychol. 1992 Oct;20(4):343–52. doi: 10.1002/1520-6629(199210)20:4<343::aid-jcop2290200408>;2-2.
    1. Wahl OF, Kaye AL. Mental illness topics in popular periodicals. Community Ment Health J. 1992 Feb;28(1):21–8. doi: 10.1007/bf00756699.
    1. Wahl O. Media Madness Public Images of Mental Illness. New Brunswick, NJ: Rutgers University Press; 1997.
    1. Wahl OF, Roth R. Television images of mental illness: results of a metropolitan Washington media watch. J Broadcast. 2009 May 22;26(2):599–605. doi: 10.1080/08838158209364028.
    1. Allen R, Nairn RG. Media depictions of mental illness: an analysis of the use of dangerousness. Aust N Z J Psychiatry. 1997 Jun 26;31(3):375–81. doi: 10.3109/00048679709073847.
    1. Borinstein AB. Public attitudes toward persons with mental illness. Health Aff (Millwood) 1992;11(3):186–96. doi: 10.1377/hlthaff.11.3.186.
    1. Coverdale J, Nairn R, Claasen D. Depictions of mental illness in print media: a prospective national sample. Aust N Z J Psychiatry. 2002 Oct 17;36(5):697–700. doi: 10.1046/j.1440-1614.2002.00998.x.998
    1. Cutcliffe J, Hannigan B. Mass media, 'monsters' and mental health clients: the need for increased lobbying. J Psychiatr Ment Health Nurs. 2001 Aug;8(4):315–21. doi: 10.1046/j.1365-2850.2001.00394.x.394
    1. Day DM, Page S. Portrayal of mental illness in Canadian newspapers. Can J Psychiatry. 1986 Dec;31(9):813–7. doi: 10.1177/070674378603100904.
    1. Lopez LR. Adolescents' attitudes toward mental illness and perceived sources of their attitudes: an examination of pilot data. Archives Psychiatric Nurs. 1991 Oct;5(5):271–80. doi: 10.1016/0883-9417(91)90025-z.
    1. Matas M, el-Guebaly N, Peterkin A, Green M, Harper D. Mental illness and the media: an assessment of attitudes and communication. Can J Psychiatry. 1985 Feb;30(1):12–7. doi: 10.1177/070674378403000103.
    1. Philo G. Mass Media Representations of Mental Health and Illness: Study of Media Content for the Health Education Board for Scotland. Glasgow: Glasgow University Media Group; 1993.
    1. Rose D. Television, madness and community care. J Community Appl Soc Psychol. 1998 May;8(3):213–28. doi: 10.1002/(sici)1099-1298(199805/06)8:3<213::aid-casp449>;2-c.
    1. Signorielli N. The stigma of mental illness on television. J Broadcast Elec Media. 1989 Jun;33(3):325–31. doi: 10.1080/08838158909364085.
    1. Reporting on mental health. Mental Health Commission of Canada. [2021-12-28].
    1. Srivastava K, Chaudhury S, Bhat P, Mujawar S. Media and mental health. Ind Psychiatry J. 2018;27(1):1–5. doi: 10.4103/ipj.ipj_73_18. IPJ-27-1
    1. Carmichael V, Adamson G, Sitter KC, Whitley R. Media coverage of mental illness: a comparison of citizen journalism vs. professional journalism portrayals. J Ment Health. 2019 Oct;28(5):520–6. doi: 10.1080/09638237.2019.1608934.
    1. Karaian J. We now spend more than eight hours a day consuming media. Quartz Media. 2015. [2021-12-24].
    1. Canadian Media Usage Trends (CMUST) IAB Canada Research. 2020. [2021-12-24].
    1. Evans-Lacko S, London J, Little K, Henderson C, Thornicroft G. Evaluation of a brief anti-stigma campaign in Cambridge: do short-term campaigns work? BMC Public Health. 2010 Jun 14;10:339. doi: 10.1186/1471-2458-10-339. 1471-2458-10-339
    1. Fung E, Lo TL, Chan RW, Woo FC, Ma CW, Mak BS. Outcome of a knowledge contact-based anti-stigma programme in adolescents and adults in the Chinese population. East Asian Arch Psychiatry. 2016 Dec;26(4):129–36.
    1. Koike S, Yamaguchi S, Ohta K, Ojio Y, Watanabe K, Ando S. Mental-health-related stigma among Japanese children and their parents and impact of renaming of schizophrenia. Psychiatry Clin Neurosci. 2017 Mar;71(3):170–9. doi: 10.1111/pcn.12423. doi: 10.1111/pcn.12423.
    1. Pietrus M. Opening Minds Interim Report. Mental Health Commission of Canada. 2013. [2021-12-24]. .
    1. Sampogna G, Bakolis I, Evans-Lacko S, Robinson E, Thornicroft G, Henderson C. The impact of social marketing campaigns on reducing mental health stigma: results from the 2009-2014 Time to Change programme. Eur Psychiatry. 2017 Feb;40:116–22. doi: 10.1016/j.eurpsy.2016.08.008. S0924-9338(16)30110-9
    1. Wright A, McGorry PD, Harris MG, Jorm AF, Pennell K. Development and evaluation of a youth mental health community awareness campaign - The Compass Strategy. BMC Public Health. 2006 Aug 22;6:215. doi: 10.1186/1471-2458-6-215. 1471-2458-6-215
    1. Henderson C, Stuart H, Hansson L. Lessons from the results of three national antistigma programmes. Acta Psychiatr Scand. 2016 Aug;134 Suppl 446:3–5. doi: 10.1111/acps.12605.
    1. Patten SB, Williams JV, Lavorato DH, Bulloch AG, Charbonneau M, Gautam M, Moss P, Abbey S, Stuart H. Perceived stigma among recipients of mental health care in the general Canadian population. Can J Psychiatry. 2016 Aug;61(8):480–8. doi: 10.1177/0706743716639928. 0706743716639928
    1. Maulik PK, Devarapalli S, Kallakuri S, Tewari A, Chilappagari S, Koschorke M, Thornicroft G. Evaluation of an anti-stigma campaign related to common mental disorders in rural India: a mixed methods approach. Psychol Med. 2016 Nov 02;47(3):565–75. doi: 10.1017/s0033291716002804.
    1. Stuart H, Chen S, Christie R, Dobson K, Kirsh B, Knaak S, Koller M, Krupa T, Lauria-Horner B, Luong D, Modgill G, Patten SB, Pietrus M, Szeto A, Whitley R. Opening minds in Canada: targeting change. Can J Psychiatry. 2014 Oct;59(10 Suppl 1):13–8. doi: 10.1177/070674371405901s05.
    1. Guruge S, Wang AZ, Jayasuriya-Illesinghe V, Sidani S. Knowing so much, yet knowing so little: a scoping review of interventions that address the stigma of mental illness in the Canadian context. Psychol Health Med. 2017 Jun;22(5):507–23. doi: 10.1080/13548506.2016.1191655.
    1. Booth RG, Allen BN, Jenkyn KM, Li L, Shariff SZ. Youth mental health services utilization rates after a large-scale social media campaign: population-based interrupted time-series analysis. JMIR Ment Health. 2018 Apr 06;5(2):e27. doi: 10.2196/mental.8808. v5i2e27
    1. Gerster J. Bell Let’s Talk Day sparked a conversation around mental health stigma. Is that still enough? Global News. 2020. [2021-12-24].
    1. Vido J. A critical investigation of Bell Let’s Talk. University of Windsor. 2019. [2021-12-24].
    1. Hartley J, McWilliam K. Story Circle: Digital Storytelling Around the World. Hoboken, New Jersey: John Wiley & Sons; 2009.
    1. Lambert J, Hessler B. Digital Storytelling: Capturing Lives, Creating Community. United Kingdom: Taylor & Francis; 2013.
    1. Rice C. The Routledge Companion to Health Humanities. Abingdon: Routledge; 2020. Digital storytelling; pp. 341–5.
    1. Sage M, Singer J, LaMarre A, Rice C. Digital Social Work. Oxford, UK: Oxford University Press; 2018. Digital storytelling: tools, techniques, and traditions.
    1. Janoušková M, Tušková E, Weissová A, Trančík P, Pasz J, Evans-Lacko S, Winkler P. Can video interventions be used to effectively destigmatize mental illness among young people? A systematic review. Eur Psychiatry. 2017 Mar;41:1–9. doi: 10.1016/j.eurpsy.2016.09.008.S0924-9338(16)30154-7
    1. Costa L, Voronka J, Landry D, Reid J, Mcfarlane B, Reville D, Church K. “Recovering our Stories”: a small act of resistance. Stud Soc Justice. 2012 Oct;6(1):85–101. doi: 10.26522/ssj.v6i1.1070.
    1. Tester K. Media, Culture and Morality. London: Routeledge; 1994.
    1. Tester K. Compassion, Morality and the Media. Buckingham: Open University Press; 2008.
    1. Stein W. On the Problem of Empathy. Netherlands: Springer; 2013.
    1. Merleau-Ponty M. Phenomenology of Perception. United Kingdom: Taylor & Francis; 2013.
    1. Sznaider N. The sociology of compassion: a study in the sociology of morals. Cultur Values. 1998 Jan;2(1):117–39. doi: 10.1080/14797589809359290.
    1. Neff K. Self-compassion: an alternative conceptualization of a healthy attitude toward oneself. Self Ident. 2003 Apr;2(2):85–101. doi: 10.1080/15298860309032.
    1. Neff KD. The development and validation of a scale to measure self-compassion. Self Ident. 2003 Jul;2(3):223–50. doi: 10.1080/15298860309027.
    1. Gilbert P. The nature and basis for compassion focused therapy. Hellenic J Psychol. 2009;6:273–91. doi: 10.4324/9780203851197.
    1. Thabane L, Ma J, Chu R, Cheng J, Ismaila A, Rios LP, Robson R, Thabane M, Giangregorio L, Goldsmith CH. A tutorial on pilot studies: the what, why and how. BMC Med Res Methodol. 2010 Jan 06;10:1. doi: 10.1186/1471-2288-10-1. 1471-2288-10-1
    1. Spreng RN, McKinnon MC, Mar RA, Levine B. The Toronto Empathy Questionnaire: scale development and initial validation of a factor-analytic solution to multiple empathy measures. J Pers Assess. 2009 Jan;91(1):62–71. doi: 10.1080/00223890802484381. 906598365
    1. Sprecher S, Fehr B. Compassionate love for close others and humanity. J Soc Pers Relat. 2016 Jun 30;22(5):629–51. doi: 10.1177/0265407505056439.
    1. Shiota MN, Keltner D, John OP. Positive emotion dispositions differentially associated with Big Five personality and attachment style. J Posit Psychol. 2006 Apr;1(2):61–71. doi: 10.1080/17439760500510833.
    1. King N. Using templates in the thematic analysis of text. In: Cassell C, Symon G, editors. Essential Guide to Qualitative Methods in Organizational Research. London, UK: SAGE Publications; 2004.
    1. Leeuwen T, Jewitt C. The Handbook of Visual Analysis. New York: SAGE Publications; 2004.
    1. Rose G. Visual Methodologies: An Introduction to the Interpretation of Visual Materials. New York: SAGE Publications; 2001.
    1. O'Keefe A. The Routeledge Handbook of Discourse Analysis. London: Routeledge; 2012. Mediadiscourse analysis.
    1. Barker C, Galasinski D. Cultural Studies and Discourse Analysis. London: SAGE Publications; 2001.
    1. Caron C, Raby R, Mitchell C, Théwissen-LeBlanc S, Prioletta J. From concept to data: sleuthing social change-oriented youth voices on YouTube. J Youth Stud. 2016 May 10;20(1):47–62. doi: 10.1080/13676261.2016.1184242.
    1. Caron C, Raby R, Mitchell C, Théwissen-LeBlanc S, Prioletta J. How are civic cultures achieved through youth social-change-oriented vlogging? A multimodal case study. Convergence. 2018 Aug 22;25(4):694–713. doi: 10.1177/1354856518795094.
    1. Raby R, Caron C, Théwissen-LeBlanc S, Prioletta J, Mitchell C. Vlogging on YouTube: the online, political engagement of young Canadians advocating for social change. J Youth Stud. 2017 Oct 26;21(4):495–512. doi: 10.1080/13676261.2017.1394995.
    1. Palinkas LA, Horwitz SM, Green CA, Wisdom JP, Duan N, Hoagwood K. Purposeful sampling for qualitative data collection and analysis in mixed method implementation research. Adm Policy Ment Health. 2015 Sep;42(5):533–44. doi: 10.1007/s10488-013-0528-y.
    1. Patton M. Qualitative Research and Evaluation Methods. London: Sage Publications; 2002.
    1. Ethical practice. Storycenter. [2021-12-24]. .
    1. Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol. 2006 Jan;3(2):77–101. doi: 10.1191/1478088706qp063oa.
    1. Guest G, MacQueen K, Namey E. Applied Thematic Analysis. New York: SAGE Publications; 2012.
    1. Corrigan PW, Green A, Lundin R, Kubiak MA, Penn DL. Familiarity with and social distance from people who have serious mental illness. Psychiatr Serv. 2001 Jul;52(7):953–8. doi: 10.1176/appi.ps.52.7.953.
    1. Corrigan PW, Michaels PJ, Vega E, Gause M, Watson AC, Rüsch N. Self-stigma of mental illness scale--short form: reliability and validity. Psychiatry Res. 2012 Aug 30;199(1):65–9. doi: 10.1016/j.psychres.2012.04.009. S0165-1781(12)00194-1
    1. Corrigan PW, Bink AB, Fokuo JK, Schmidt A. The public stigma of mental illness means a difference between you and me. Psychiatry Res. 2015 Mar 30;226(1):186–91. doi: 10.1016/j.psychres.2014.12.047.S0165-1781(15)00007-4
    1. Lincoln Y, Guba E. Naturalistic Inquiry. Newbury Park, CA: SAGE Publications; 1985.
    1. Tobin GA, Begley CM. Methodological rigour within a qualitative framework. J Adv Nurs. 2004 Nov;48(4):388–96. doi: 10.1111/j.1365-2648.2004.03207.x.JAN3207
    1. Guba E, Lincoln Y. Fourth Generation Evaluation. Newbury Park, CA: SAGE Publications; 1989.
    1. Thabane L, Hopewell S, Lancaster GA, Bond CM, Coleman CL, Campbell MJ, Eldridge SM. Methods and processes for development of a CONSORT extension for reporting pilot randomized controlled trials. Pilot Feasibility Stud. 2016 May 20;2(1):25. doi: 10.1186/s40814-016-0065-z.
    1. Eldridge SM, Chan CL, Campbell MJ, Bond CM, Hopewell S, Thabane L, Lancaster GA, PAFS Consensus Group CONSORT 2010 statement: extension to randomised pilot and feasibility trials. Br Med J. 2016 Oct 24;355:i5239. doi: 10.1136/bmj.i5239.

Source: PubMed

Sponsorzy i współpracownicy

Warunki medyczne

Interwencje lekowe

3
Subskrybuj