Impacts of Uncertainty of Progressive Disability on Life Perspectives

Abstract

T he 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.