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Using Photovoice to Document the Experiences of Individuals with Aphasia – A Pilot Project

Caroline Auclair1, Marie-Ange Lataille1, Laura Laird2, 3, Roanne Thomas1, Elizabeth Rochon2, 3 and Carol Leonard1, 2*
  • 1 University of Ottawa, School of Rehabilitation Sciences, Canada
  • 2 University of Toronto, Speech-Language Pathology, Canada
  • 3 Toronto Rehabilitation Institute, University Health Network, Canada

Background: Presently there are over 100,000 Canadians living with aphasia and this number is expected to increase with the aging population (Dickey et al., 2010). Although the prevalence of this disorder is relatively high, surveys conducted around the world (including Canada, Australia, United States, England) suggest that awareness and understanding of the disorder are limited (Code et al., 2016; 2001). Simmons-Mackie and Kagan (2007) examined the potential impact of aphasia on an individual’s quality of life and suggested that, among other things, social isolation, difficulty participating in leisure activities, and difficulty maintaining employment may result. They suggested that raising the level of awareness of aphasia among the public in the form of sensitivity training and education is important to better the lives of individuals with aphasia. A recent study (Le Dorze et al., 2014) examining the factors affecting participation in activities by individuals with aphasia identified barriers such as limited services post-stroke, communication problems and physical limitations. Factors found to facilitate participation included aphasia community organizations, supportive family members and positive personal characteristics. The purpose of the present investigation was to have a better understanding of the challenges and successes encountered by people living with aphasia. Methods: This project used a participatory action research (PAR) art-based strategy – that of photovoice. Photovoice is described as "...a PAR method by which people create and discuss photographs as a means of catalyzing personal and community change. Using cameras, participants document the reality of their lives" (p. 75, Wang et al., 1998). Participants included 3 English-speaking women (ages, 50, 82, 69 years) and one man (age 69). Participants took photos over a 3-week period addressing the question “What are your communication issues, challenges, and successes in living with aphasia?” At a second session, participants shared information about the meaning of their four most significant photographs (See Figure 1). Data were transcribed and analyzed using a “Constant Comparative” framework (Kruger & Casey, 2009) whereby key themes and quotes were identified and coded according to major concepts. Results: Frustration, discouragement, and isolation were concepts used to describe the challenges of barriers to social participation (“For a moment, I can’t talk at all. I was stuck); and loss of independence and abilities (“You have to wait, depend on people”). Hope, happiness and support were concepts related to the successes of perseverance (“[…] The doctor said, ‘It’s not possible’ and then I said, ‘I try it anyway’”.) and reminiscence (“I trailed her around, my sister. Yes”). Discussion/Conclusion: Aphasia is a communication problem that can be associated with many challenges as well as individual success. Increasing awareness of aphasia in our society may contribute to decreasing barriers to participation by adjusting one’s communication strategies and/or modifying services. Recognizing the amount of perseverance needed in rehabilitation can help better understand the strengths of and efforts expended by people with aphasia who are aiming to improve their quality of life. While aphasia represents many challenges, success may be reflected in the spirit of hope, happiness, and the support of others.

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Acknowledgements

We wish to thank the participants and the staff at the Aphasia Centre of Ottawa for their enthusiasm and support of this project.

References

Code, C., Papathanasiou, I., Rubio-Bruno, S., de la Paz Cabana, M., Villanueva, M.M., Haaland- Johansen, L., Prizl-Jakovac, T., Leko, A., Zemva, N., Patterson, R., Berry, R., Rochon, E., Leonard, C., Robert, A. (2016). International patterns of the public awareness of aphasia. International Journal of Language and Communication Disorders, 51(3), 276-284.

Code, C., Simmons-Mackie, N., Armstrong, E., Stiegler, L., Armstrong, J., Bushby, E., Carew-Price, P., Curtis, H., Haynes, P., McLeod, E., Muhleisen, V., Neate, J., Nikolas, A., Rolfe, D., Rubly, C., Simpson, R., Webber, A. (2001). The public awareness of aphasia: An international survey. International Journal of Language and Communication Disorders, 36 (supplement), 1-6.

Dickey, L., Kagan, A., Lindsay, P., Fang, J., Rowland, A., & Black, S. (2010). Incidence and profile of inpatient stroke-induced aphasia in Ontario, Canada. Archives of Physical Medicine and Rehabilitation, 91, 196-202.

Kruger, R.A., & Casey, M.A. (2009). Focus groups: A practical guide for applied research (4th ed.). California: Sage Publications

Le Dorze, G., Salois-Bellerose, É., Alepins, M. Croteau, C., & Hallé, M-C. (2014). A description of the personal and environmental determinants of participation several years post-stroke according to views of people who have aphasia. Aphasiology, 28(4), 421-439.

Simmons-Mackie, N., Kagan, A. (2007). Application of the ICF in aphasia. Seminars in Speech and Language, 28(4), 244-253.

Wang, C.C., Yi, W.K., Tao, Z.W., & Carovano, K. (1998). Photovoice as a participatory health promotion strategy. Health Promotion International, 13(1), 75-86.

Keywords: Aphasia, Communication, Photovoice, Participatory Action Research, public awareness

Conference: Academy of Aphasia 56th Annual Meeting, Montreal, Canada, 21 Oct - 23 Oct, 2018.

Presentation Type: poster presentation

Topic: not eligible for a student prize

Citation: Auclair C, Lataille M, Laird L, Thomas R, Rochon E and Leonard C (2019). Using Photovoice to Document the Experiences of Individuals with Aphasia – A Pilot Project. Conference Abstract: Academy of Aphasia 56th Annual Meeting. doi: 10.3389/conf.fnhum.2018.228.00065

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Received: 26 Apr 2018; Published Online: 22 Jan 2019.

* Correspondence: Dr. Carol Leonard, University of Ottawa, School of Rehabilitation Sciences, Ottawa, Ontario, Canada, carol.leonard@uottawa.ca