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Document Typology: Research
Methodology addressed by the publication:Narrative medicine
Title of document: Sustaining quality in life: Common practices among those with Parkinson's disease.
Name of author(s): Whitney CM
Name of publisher: Rush University, College of Nursing, 1998; D.N.Sc. (178 p)
Language of the publication: English
Language of the review: English
Parkinson's disease (PD) is a chronic, progressive neurological illness. While pharmacological and surgical treatments often improve symptoms there is, to date, no known way to arrest disease progression. Throughout the course of their illness, persons with PD must continually make adjustments in their daily lives. Their relationship with the world is dramatically altered as they experience changes in their ability to move, speak, and possibly think. What promotes quality in the lives of those with PD has not been well explored. Therefore, the purpose of this study was to explore the practices that individuals with Parkinson's disease have incorporated into their everyday lives to help them sustain quality in their lives. The premise of this study was that those who are "successfully" living with PD have learned how to sustain quality in their lives, and this learning, or "know-how," was acquired through their experience of living with PD (Benner, 1994).
Twelve participants, identified through purposeful sampling at an urban, midwestern movement disorder center, were interviewed about their experience with PD and what they are doing to enhance their lives. Interpretive phenomenology was the method used to uncover and make explicit the common practices of those with PD that help them sustain quality in their lives. The audio-recorded interviews were transcribed and interpreted using a modification of the method described by Diekelmann, Allen, and Tanner (1989).
One pattern and five themes emerged from the interviews. The pattern was Maintaining the Square. An indication that the participants are successful at maintaining the square is their ability to maintain continuity in their lives. This pattern reflects their determination to remain connected to their familiar world. The themes are: Learning How, Accepting Limitations, Seeking Knowledge, Engaging in Meaningful Experiences, and Living for Today.
Results of this study will begin to bridge the gap in our knowledge so that we can move beyond focusing on what individuals with PD cannot do but on how they sustain quality in their lives.
Reviewer's comments on the document:
This study will provide us with direction so that interventions to improve the quality of Parkinson Disease patients lives can be developed and tested.
Where to find it: PsycINFO Database

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