While optimizing quality of life (QOL) is a key goal of rehabilitation care, no\nprevious study has reported on what ââ?¬Ë?QOLââ?¬â?¢ means to youth with chronic health\nconditions. In addition, no qualitative studies have explored the relationship between\nQOL and self-determination (SD). Objectives of this qualitative study were to examine:\nwhat the terms ââ?¬Ë?quality of lifeââ?¬â?¢ and ââ?¬Ë?self-determinationââ?¬â?¢ mean to youth with chronic\nconditions; the factors these youth think are linked with these concepts; the relationship\nthey see between concepts, the types of future goals youth have and how they view the\nconnection between their SD and these goals. A descriptive methodology was used. A\npurposive sample of 15 youth aged 15 to 20 years was obtained. Youth had cerebral\npalsy, a central nervous system disorder, or autism spectrum disorder. Semi-structured\ninterviews were conducted first, followed by a focus group. Line-by-line coding of\ntranscripts was completed, codes were collapsed into categories, and themes identified.\nParticipants viewed QOL as an overarching personal evaluation of their life, and used\nterms such as satisfaction and happiness to describe the concept. Factors related to\nQOL included: ââ?¬Ë?relationshipsââ?¬â?¢, ââ?¬Ë?supportive environmentsââ?¬â?¢, ââ?¬Ë?doing thingsââ?¬â?¢, ââ?¬Ë?personal\ngrowth and moving forwardââ?¬â?¢, and ââ?¬Ë?understanding of self/acceptance of disabilityââ?¬â?¢.\nParticipants described SD in such terms as confidence and motivation. Contributors\nto SD were: ââ?¬Ë?personal strengthsââ?¬â?¢, ââ?¬Ë?interdependenceââ?¬â?¢, and ââ?¬Ë?functional independenceââ?¬â?¢. SD\nwas considered important to QOL. Youth goals were reflective of the goals of most\nadolescents. They identified the importance of having key goals that were of personal\ninterest to them. This study adds consumer-based information to the debate over the\nmeaning of QOL. Service providers and decision makers should be aware of the factors\nthat youth feel impact their QOL and SD, the importance of SD to youth QOL, and of\nSD to future goals, and consider this information when tailoring therapeutic\ninterventions.
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