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

Abstract

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.

Three-year trajectories of global perceived quality of life for youth with chronic health conditions

“…All trajectories appeared stable over 3 years of follow-up. This is notable since study participants were passing through early to late adolescence where they would be thought to be experiencing multiple transitions, such as transferring to another school level, desiring greater independence from family, connecting more with peers, and looking to venture out into the community [12, 59]. It might be anticipated this would lead to formation of groups with changing trajectories of QOL, either increasing for those who are successfully dealing with transitions, or shifting negatively for those who are not.…”

“…Similarly, youth with a greater sense of school belongingness and safety and higher self-determination in terms of goal orientation were less likely to be in the ‘moderate/low and stable’ group in the youth analysis. Other research indicates an important link between self-determination and QOL for youth with chronic conditions [12, 79, 80]. Universal prevention programs may be important for promoting inclusive school cultures and for maintaining high QOL for youth who are doing well at school, while those who are experiencing difficulties with learning, motivation, and being accepted at school may benefit most from targeted best practice interventions that are available from early childhood.…”

“…A number of qualitative studies in the past 15 years have gathered perspectives of children and youth with chronic conditions about what is important to their QOL (see for a review [12]). Only one [12], however, asked youth what QOL meant to them.…”

“…Only one [12], however, asked youth what QOL meant to them. They overwhelmingly defined QOL as an overall sense of life satisfaction or enjoyment.…”

You never transition alone! Exploring the experiences of youth with chronic health conditions, parents and healthcare providers on self‐management

“…; McDoungall et al . ). The importance of self‐management for chronic conditions and illnesses has garnered attention from researchers and clinicians, which has promoted for a re‐examination of current views of health and well‐being to extend beyond medical diagnosis (Sattoe et al .…”