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Impacts of Uncertainty of Progressive Disability on Life Perspectives

Published online by Cambridge University Press:  15 October 2015

Roy K. Chen*
Affiliation:
The University of Texas-Pan American, United States of America. rchen@utpa.edu
Eva Miller
Affiliation:
The University of Texas-Pan American, United States of America.
Wonsun (Sunny) Seo
Affiliation:
Michigan State University, United States of America.
Eliana Mendoza
Affiliation:
The University of Texas-Pan American, United States of America.
*
*Address for correspondence: Roy K. Chen, Ph.D., CRC, Assistant Professor, Department of Rehabilitation, The University of Texas-Pan American, 1201 W. University Drive, HSW 1.302, Edinburg, Texas 78539, USA
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Abstract

The present study examined ways in which progressive disability affects the pursuit of personal goals and how the uncertainty of progressive disability influences life perspectives. A total of 117 individuals with muscular dystrophy responded to two open-ended questions designed to elicit their views on the psychological and behavioural manifestations of progressive disability. Specifically, the study used a three-step phenomenological existential approach to analyse the written responses by the participants (Creswell, 2009). The results indicated that factors such as involuntary early retirement, problems establishing and maintaining romantic relationships; changing personal and career goals, fear of uncertainties, feeling undesirable and unattractive, lack of accessible transportation, and fear of passing on hereditary diseases affect an individual's psychological well-being. The need for around-the-clock care can present a burden that leads to caregiver burnout and resentment. Implications for rehabilitation professionals are provided based upon review of the literature and qualitative data analysis.

Type
Articles
Copyright
Copyright © Cambridge University Press 2010

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