Understanding Parkinson’s through visual narratives: “I’m not Mrs. Parkinson’s”

Abstract

Introduction

Although it is accepted that individuals with Parkinson’s disease must navigate challenges such as receiving their diagnosis and changing daily occupations, little is known about how they navigate. The purpose of this study is to deepen the current understanding of the experience of living with Parkinson’s disease and its implications for occupation through a narrative visual methodology (photo-elicitation).

Method

Six individuals with Parkinson’s disease were asked to take photographs and share verbal narrative accounts to illustrate their experience of living with Parkinson’s disease.

Findings

Results highlight the interrelationship between occupation and identity, as many of the participants’ stories were interpreted as foregrounding the negotiation of occupation, and how such negotiation shaped their sense of identity. Overall, three major themes were identified: (1) Framing the meaning of Parkinson’s disease (accepting the disease as part of who they were); (2) Negotiating engagement in occupation (ongoing deliberation over whether to continue engaging in certain aspects of life as Parkinson’s disease progressed); and (3) Being ready to accept changes that impact personal or social identity (readiness to accept help and to identify as someone with Parkinson’s disease).

Conclusion

Attending to insights regarding the lived experience of Parkinson’s disease will enhance quality of care through informing an enriched client-centered, occupation-based approach.

Keywords

Parkinson’s disease identity lived experience

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References

Bach

(2008) Visual narrative inquiry. In: Givens

(ed.) The Sage Encyclopedia of Qualitative Research Methods, Thousand Oaks, CA: SAGE, pp. 939–941.

Benharoch

Wiseman

(2004) Participation in occupations: Some experiences of people with Parkinson’s disease. British Journal of Occupational Therapy 67(9): 380–387.

Braun

Clarke

(2006) Using thematic analysis in psychology. Qualitative Research in Psychology 3(2): 77–101.

Bryson-Campbell

Shaw

O’Brien

et al. (2016) Exploring the transformation in occupational identity: Perspectives from brain injury survivors. Journal of Occupational Science 23(2): 208–216.

Bukhave

Huniche

(2016) Photo-interviewing to explore everyday occupation: Benefits and issues. Journal of Occupational Science 23(1): 96–107.

Bury

(1982) Chronic illness as biographical disruption. Sociology of Health & Illness 4(2): 167–182.

Clandinin

Huber

(2010) Narrative inquiry. In: McGaw

Baker

Peterson

(eds) International Encyclopedia of Education, 3rd ed. New York: Elsevier, pp. 436–441.

Clark-Ibanez

(2004) Framing the social world with photo-elicitation interviews. American Behavioral Scientist 47(12): 1507–1527.

Connelly

Clandinin

(1990) Stories of experience and narrative inquiry. Educational Researcher 19(5): 2–14.

10.

Crotty

(1998) Constructionism: The Making of Meaning. The Foundations of Social Research: Meaning and Perspective in the Research Process, London, Los Angeles: SAGE.

11.

Eccles

Murray

Simpson

(2011) Perceptions of cause and control in people with Parkinson’s disease. Disability and Rehabilitation 33(15–16): 1409–1420.

12.

Haahr

Kirkevold

Hall

EOC

et al. (2011) Living with advanced Parkinson’s disease: A constant struggle with unpredictability. Journal of Advanced Nursing 67(2): 408–417.

13.

Habermann

(1999) Continuity challenges of Parkinson’s disease in middle life. Journal of Neuroscience Nursing 31(4): 200–212.

14.

Harper

(2002) Talking about pictures: A case for photo elicitation. Visual Studies 17(1): 13–26.

15.

Harrison

(2002) Photographic visions and narrative inquiry. Narrative Inquiry 12(1): 87–111.

16.

Hartley

McArthur

Coenen

et al. (2014) Narratives reflecting the lived experiences of people with brain disorders: Common psychosocial difficulties and determinants. PLoS One 9: e96890.

17.

Holmes

Lutz

Ravenek

et al. (2013) Enhancing client-centeredness in Parkinson’s disease care: Attending to the psychosocial implications of lived experience. The Open Journal of Occupational Therapy 1(4): 1–9.

18.

Hyden

(1997) Illness and narrative. Sociology of Health & Illness 19(1): 48–69.

19.

Jankovic

(2008) Parkinson’s disease: Clinical features and diagnosis. Journal of Neurology, Neurosurgery & Psychiatry 79(4): 368–376.

20.

Josephsson

Asaba

Jonsson

et al. (2009) Creativity and order in communication: Implications from philosophy to narrative research concerning human occupation. Scandinavian Journal of Occupational Therapy 13(2): 86–93.

21.

Kielhofner

(2004) Conceptual Foundations of Occupational Therapy, Philadelphia: F.A. Davis.

22.

Klinger

(2005) Occupational adaptation: Perspectives of people with traumatic brain injury. Journal of Occupational Science 12(1): 9–16.

23.

Laliberte-Rudman

(2002) Linking occupation and identity: Lessons learned through qualitative exploration. Journal of Occupational Science 9(1): 12–19.

24.

Lewis

Foltynie

Blackwell

et al. (2005) Heterogeneity of Parkinson’s disease in the early clinical stages using a data driven approach. Journal of Neurology, Neurosurgery & Psychiatry 76(3): 343–348.

25.

Macphee

GJA

Stewart

(2012) Parkinson’s disease: Treatment and non-motor features. Reviews in Clinical Gerontology 22(4): 243–260.

26.

Molineux

Richard

(2003) Storied approaches to understanding occupation. Journal of Occupational Science 10(1): 52–60.

27.

Murdock

Cousins

Kernohan

(2015) “Running water won’t freeze”: How people with advanced Parkinson’s disease experience occupation. Palliative & Supportive Care 13(5): 1363–1372.

28.

Phillips

(2006) Dropping the bomb: The experience of being diagnosed with Parkinson’s disease. Geriatric Nursing 27(6): 362–369.

29.

Reese

(2007) Psychosocial factors in Parkinson’s disease. Disease Month 53(5): 291–295.

30.

Riessman

(2008) Narrative Methods for the Human Sciences, Thousand Oaks, CA: SAGE.

31.

Roussi

Avidi

(2008) Meaning-making and chronic illness: Cognitive and narrative approaches. Hellenic Journal of Psychology 5(2): 147–178.

32.

Smith

Shaw

(2017) Learning to live with Parkinson’s disease in the family unit: An interpretive phenomenological analysis of well being. Medicine Health Care and Philosophy 20(1): 13–21.

33.

Smith

Sparkes

(2008) Narrative and its potential contribution to disability studies. Disability & Society 23(1): 17–28.

34.

Soundy

Stubbs

Roskell

(2014) The experience of Parkinson’s disease: A systematic review and meta-ethnography. Scientific World Journal. 2014: 613592.

35.

Unruh

(2004) Reflections on: “So … what do you do?” Occupation and the construction of identity. Canadian Journal of Occupational Therapy 71(5): 290–295.

36.

Vrkljan

Polgar

(2007) Linking occupational participation and occupational identity: An exploratory study of the transition from driving to driving cessation in older adulthood. Journal of Occupational Science 14(1): 30–39.

37.

Wicks

Whiteford

(2003) Value of life stories in occupation-based research. Australian Occupational Therapy Journal 50(2): 86–91.

38.

Wressle

Engstrand

Granérus

A-K

(2007) Living with Parkinson’s disease: Elderly patients’ and relatives’ perspective on daily living. Australian Occupational Therapy Journal 54(2): 131–139.