Quality of Life and Self-Determination: Youth with Chronic Health Conditions Make the Connection

While optimizing quality of life (QOL) is a key goal of rehabilitation care, no previous study has reported on what 'QOL' means to youth with chronic health conditions. In addition, no qualitative studies have explored the relationship between QOL and self-determination (SD). Objectives of this qualitative study were to examine: what the terms 'quality of life' and 'self-determination' mean to youth with chronic conditions; the factors these youth think are linked with these concepts; the relationship they see between concepts, the types of future goals youth have and how they view the connection between their SD and these goals. A descriptive methodology was used. A purposive sample of 15 youth aged 15 to 20 years was obtained. Youth had cerebral palsy, a central nervous system disorder, or autism spectrum disorder. Semi-structured interviews were conducted first, followed by a focus group. Line-by-line coding of transcripts was completed, codes were collapsed into categories, and themes identified. Participants viewed QOL as an overarching personal evaluation of their life, and used terms such as satisfaction and happiness to describe the concept. Factors related to QOL included: 'relationships', 'supportive environments', 'doing things', 'personal growth and moving forward', and 'understanding of self/acceptance of disability'. Participants described SD in such terms as confidence and motivation. Contributors to SD were: 'personal strengths', 'interdependence', and 'functional independence'. SD was considered important to QOL. Youth goals were reflective of the goals of most adolescents. They identified the importance of having key goals that were of personal interest to them. This study adds consumer-based information to the debate over the meaning of QOL. Service providers and decision makers should be aware of the factors that youth feel impact their QOL and SD, the importance of SD to youth QOL, and of SD to future goals, and consider this information when tailoring therapeutic interventions.