Impacts of Uncertainty of Progressive Disability on Life Perspectives

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.