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Living with Parkinson's disease – perceptions of invisibility in a photovoice study

Published online by Cambridge University Press:  30 January 2017

KERSTIN ROGER ,
MONIKA WETZEL  and
LESLIE PENNER
KERSTIN ROGER*
Affiliation:
Community Health Sciences, University of Manitoba, Winnipeg, Canada.
MONIKA WETZEL
Affiliation:
Policy Analyst, Manitoba Health Care Branch, Winnipeg, Canada.
LESLIE PENNER
Affiliation:
Clinical Coordinator, Sumac Place, Gibsons, Canada.
*
Address for correspondence: Kerstin Roger, Community Health Sciences, University of Manitoba, 220-35 Chancellor Circle, Winnipeg, Manitoba R3 T 2N2, Canada E-mail: [email protected]
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Abstract

Based on previous community research, we prioritise the need to understand better how experiences and feelings of invisibility could be shaped by relational dynamics, interfacing with service provision, and social forces, with the overarching view of understanding better the experiences of participants living with Parkinson's disease. A photovoice methodology was employed. A discussion of one case study of Bindy and Volta leads to a better understanding of how strong spousal support can significantly alter how one individual experiences and defines living with Parkinson's.

Keywords

Parkinson'squalitativespouse/familyphotovoice
Type
Article
Information
Ageing & Society , Volume 38 , Issue 5 , May 2018 , pp. 1041 - 1062
Copyright
Copyright © Cambridge University Press 2017 

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References

Baker, N. 1998. Coping with Parkinson's disease in the marital dyad. Doctoral dissertation, Clinical Psychology, ProQuest LLC, Ann Arbor, Michigan.Google Scholar
Braun, V. and Clarke, V. 2013. Successful Qualitative Research: A Practical Guide for Beginners. Sage, Thousand Oaks, California.Google Scholar
Burns, K. and Jensen, P. July 20, 2012. Health and support services access and use by persons with Parkinson disease: an Alberta, Canada case study. Paper presented at the 16th World Multi-Conference on Systemics, Cybernetics and Informatics, Orlando, Florida.Google Scholar
Catalani, C. and Minkler, M. 2010. Photovoice: a review of the literature in health and public health. Health Education and Behavior, 37, 3, 424–51.CrossRefGoogle ScholarPubMed
Gofton, T. E. and Jog, M. 2008. Diagnosis Parkinson's disease: the patient perspective. Canadian Journal of Neurological Sciences, 35, 4, 510–2.CrossRefGoogle ScholarPubMed
Hermanns, M. 2013. The visible and invisible stigmatization of Parkinson's disease. Journal of the American Association of Nurse Practitioners, 25, 10, 563–6.Google ScholarPubMed
Karner, T. X. and Bobbitt-Zeher, D. 2005. Losing selves: dementia care as disruption and transformation. Symbolic Interaction, 28, 4, 549–70.CrossRefGoogle Scholar
Nolden, L. F., Tartavoulle, T. and Porche, D. J. 2014. Parkinson's disease: assessment, diagnosis, and management. Journal for Nurse Practitioners, 10, 7, 500–6.CrossRefGoogle Scholar
Nykiforuk, C. I. J., Vallianatos, H. and Nieuwendyk, L. M. 2011. Photovoice as a method for revealing community perceptions of the built and social environment. International Journal of Qualitative Methods, 10, 2, 103–23.CrossRefGoogle ScholarPubMed
Parkinson Society Canada 2012. 2012 Annual Report. Parkinson Society Canada, Toronto.Google Scholar
Penner, L. and Roger, K. 2012. The person in the room: how relating holistically contributes to an effective patient–care provider alliance. Communication and Medicine, 9, 1, 49–58.CrossRefGoogle Scholar
Rhoades, D. R., McFarland, K. E., Finch, W. H. and Johnson, A. D. 2001. Speaking and interruptions during primary care office visits. Family Medicine, 33, 7, 528–32.Google ScholarPubMed
Roger, K. and Medved, M. 2010. Living with Parkinson's disease – managing identity together. International Journal of Qualitative Studies on Health and Wellbeing, 5, 2, 1–8.Google ScholarPubMed
Roger, K., Medved, M. and Mary-Quigley, L. 2010. Perceptions of healthcare and familial communications in the context of Parkinson's disease and multiple sclerosis. Journal in Healthcare Communication, 3, 2, 124–37.CrossRefGoogle Scholar
Roger, K. and Penner, L. 2012. Risk and resilience: living with a neurological condition. In Tunali, N. (ed.), Huntington's Disease: Core Concepts and Current Advances. InTech, Rijeka, Croatia, 509–30.Google Scholar
Roger, K., Wetzel, M., Hutchinson, S., Packer, T. and Versnel, J. 2014. How can I still be me? Strategies to maintain a sense of self in the context of a neurological condition. International Journal of Qualitative Studies on Health and Well-being, 9.CrossRefGoogle ScholarPubMed
Statistics Canada 2012. Neurological conditions, by age group and sex, household population aged 0 and over, 2010/2011. CANSIM Table 105–1300, Statistics Canada, Ottawa. doi: https://dx.doi.org/10.3402%2Fqhw.v9.2353Google Scholar
Statistics Canada 2013. Neurological conditions in institutions, by age, sex, and number of residents, Canada, provinces and territories, 2011/2012. CANSIM Table 105–1305, Statistics Canada, Ottawa.Google Scholar
Thorne, S., Con, A., McGuinness, L., McPherson, G. and Harris, S. R. 2004. Health care communication issues in multiple sclerosis: an interpretive description. Qualitative Health Research, 14, 1, 5–22.CrossRefGoogle ScholarPubMed
Tickle-Degnen, L. and Lyons, K. D. 2004. Practitioners’ impressions of patients with Parkinson's disease: the social ecology of the expressive mask. Social Science and Medicine, 58, 3, 603–14.CrossRefGoogle ScholarPubMed
Tsang, B. K. and Macdonell, R. 2011. Multiple sclerosis – diagnosis, management and prognosis. Australian Family Physician, 40, 12, 948–55.Google ScholarPubMed
Versnel, J., Packer, T., Brown, J., Godwin, M., Hutchinson, S., Kephart, G., MacKenzie, D., Roger, K., Stadnyk, R., Villeneuve, M., Warner, G. and Weeks, L. E. 2013. The everyday experience of living with and managing a neurological condition. Final report, Public Health Agency Canada, Ottawa.CrossRefGoogle Scholar
Wang, C. 1999. Photovoice: a participatory action research strategy applied to women's health. Journal of Women's Health, 8, 2, 185–92.CrossRefGoogle ScholarPubMed
Wang, C. and Burris, M. 1997. Photovoice: concept, methodology, and use for participatory needs assessment. Health Education and Behavior: The Official Publication of the Society for Public Health Education, 24, 3, 369–87.CrossRefGoogle ScholarPubMed
Wang, C., Yi, W., Tao, Z. and Carovano, K. 1998. Photovoice as a participatory health promotion strategy. Health Promotion International, 13, 1, 75–86.CrossRefGoogle Scholar
White, C. P., White, M. B. and Russell, C. S. 2008. Invisible and visible symptoms of multiple sclerosis: which are more predictive of health distress? Journal of Neuroscience Nursing, 40, 2, 85–95.CrossRefGoogle ScholarPubMed
World Health Organization 2006. Neurological Disorders: Public Health Challenges. World Health Organization, Geneva.Google Scholar