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

Author

Listed:
  • Janette McDougall

    (Thames Valley Children’s Centre)

  • Patricia Baldwin

    (Thames Valley Children’s Centre)

  • Jan Evans

    (Thames Valley Children’s Centre)

  • Megan Nichols

    (Thames Valley Children’s Centre)

  • Cole Etherington

    (Western University)

  • Virginia Wright

    (Bloorview Research Institute)

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.

Suggested Citation

  • Janette McDougall & Patricia Baldwin & Jan Evans & Megan Nichols & Cole Etherington & Virginia Wright, 2016. "Quality of Life and Self-Determination: Youth with Chronic Health Conditions Make the Connection," Applied Research in Quality of Life, Springer;International Society for Quality-of-Life Studies, vol. 11(2), pages 571-599, June.
    • Handle: RePEc:spr:ariqol:v:11:y:2016:i:2:d:10.1007_s11482-014-9382-7
    DOI: 10.1007/s11482-014-9382-7
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    References listed on IDEAS

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    1. Laura Nota & Salvatore Soresi & Lea Ferrari & Micheal Wehmeyer, 2011. "A Multivariate Analysis of the Self-Determination of Adolescents," Journal of Happiness Studies, Springer, vol. 12(2), pages 245-266, April.
    2. Sølvi Helseth & Nina Misvær, 2010. "Adolescents’ perceptions of quality of life: what it is and what matters," Journal of Clinical Nursing, John Wiley & Sons, vol. 19(9‐10), pages 1454-1461, May.
    3. Theresa Beckie & Leslie Hayduk, 1997. "Measuring Quality of Life," Social Indicators Research: An International and Interdisciplinary Journal for Quality-of-Life Measurement, Springer, vol. 42(1), pages 21-39, September.
    4. Janette McDougall & Virginia Wright & Megan Nichols & Linda Miller, 2013. "Assessing the Psychometric Properties of Both a Global and a Domain-Specific Perceived Quality of Life Measure When Used with Youth Who Have Chronic Conditions," Social Indicators Research: An International and Interdisciplinary Journal for Quality-of-Life Measurement, Springer, vol. 114(3), pages 1243-1257, December.
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    Cited by:

    1. Marie Blížkovská & Vicente Martínez-Tur & Luminita Pătras & Carolina Moliner & Esther Gracia & José Ramos, 2022. "Using Autonomous Teams to Improve Quality of Life of People with Intellectual Disabilities," Applied Research in Quality of Life, Springer;International Society for Quality-of-Life Studies, vol. 17(4), pages 2387-2403, August.
    2. Blakeslee, Jennifer E. & Powers, Laurie E. & Geenen, Sarah & Schmidt, Jessica & Nelson, May & Fullerton, Ann & George, Kevin & McHugh, Elizabeth & Bryant, Mary, 2020. "Evaluating the My Life self-determination model for older youth in foster care: Establishing efficacy and exploring moderation of response to intervention," Children and Youth Services Review, Elsevier, vol. 119(C).
    3. Olsson, Tina M & Blakeslee, Jennifer & Bergström, Martin & Skoog, Therése, 2020. "Exploring fit for the cultural adaptation of a self-determination model for youth transitioning from out-of-home care: A comparison of a sample of Swedish youth with two samples of American youth in o," Children and Youth Services Review, Elsevier, vol. 119(C).
    4. Lee, Junghee & Powers, Laurie & Geenen, Sarah & Schmidt, Jessica & Blakeslee, Jennifer & Hwang, Insik, 2018. "Mental health outcomes among youth in foster care with disabilities," Children and Youth Services Review, Elsevier, vol. 94(C), pages 27-34.

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