Academic journal article The Qualitative Report

Visions of Living with Parkinson's Disease: A Photovoice Study

Academic journal article The Qualitative Report

Visions of Living with Parkinson's Disease: A Photovoice Study

Article excerpt

"Whatever is real has a meaning."

Michael Oakeshott ([1933] 1978, p. 52)

Parkinson's disease (PD) is one of the most common chronically disabling disorders of the nervous system (Parkinson's Disease Foundation [PDF], 2014). PD is a result of widespread destruction of dopamine in the substantia nigra, the primary area of the brain that is responsible for the production of dopamine (Guyton & Hall, 2006). From a biomedical perspective, the nature and treatment of Parkinson's is well-documented throughout the literature. However, little is known about what it is like to live with PD. While the symptoms of PD differ from person to person, the cardinal symptoms are uncontrollable tremors, muscle rigidity, and difficulty initiating movement. As the disease progresses, difficulty walking, talking, writing, and performing other actions that require a high degree of muscular coordination may ensue. The unknown etiology of PD raises many questions, but what is known is that there is a deficiency of dopamine in the brain. How or why certain neurons die remains a mystery. Hypotheses include exposure to unknown viral agent(s) and environmental toxins, breakdown of the body's protective mechanism with advancing age, and unexplained acceleration of the normal aging process (Rajput, Rajput, & Rajput, 2008). Currently, there is no cure, but symptoms may be managed through medications and/or surgical treatments. Current drug therapy is symptomatic and aimed at restoring dopaminergic function in the brain (Brooks, 2000).

According to current disease incidence data, approximately 60,000 Americans are diagnosed with PD annually and approximately 7 to 10 million individuals living around the globe are afflicted with the disease (Parkinson's Disease Foundation, 2014). Given that Parkinson's disease is a chronic, progressive disorder, imagine, for a moment, that you were told that you have PD. What would this mean to you? How would this affect your daily life? The way in which an individual copes with PD or any other chronic illness is personal. For many, the physical and psychological changes may not be obvious or bothersome while for others, visible manifestations are more apparent and worrisome. Several researchers have found that living with a degenerative disorder such as advanced PD, affects one's daily life in a variety of ways (Haahr, Kirkevold, Hall, & Ostergaard, 2010). Depression (Yamanishi et al., 2013), anxiety (Hanna & Cronin-Golomg, 2012), loss of control (Van Der Bruggen & Widdershoven, 2004), and decreased self-esteem (Caap-Ahlgren, Lannerheim, & Dehlin, 2002) have all been reported in the literature. While there is limited qualitative research on what it is like to live with PD, this manuscript provides a unique glimpse of PD through the participants' lens. The purpose of this study is to describe the experience of living with PD through the participants' capture of photographic images, using the Photovoice method. The research question that guided the study was: What insights might we gain about the lived experiences of persons with PD through participant generated photographs?

Review of the Literature

We were unable to locate studies that specifically addressed the holistic/whole-body approach: physiological, psychological, social, and spiritual characteristics of persons with PD from the patient's perspective. Florence Nightingale, known as the "mother of modern nursing," recognized that people are multifaceted individuals and stressed the importance of employing a holistic approach when caring for the "whole person": one's physical, psychological, social, and spiritual well-being (O'Brien King & Gates, 2007). Based on this fundamental belief, it is important to conduct a holistic assessment in an effort to fully understand a person. As nurses, the authors subscribe to the theoretical orientation of the holistic/whole body approach and feel that a qualitative means of exploration helps convey the individual introspective/perspective of life with a chronic illness. …

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