Quality of Life and SelfDetermination Youth with

Authors: Janette McDougall Patricia Baldwin Jan Evans Megan Nichols Nicole Etherington Virginia Wright

Publish Date: 2015/01/07

Volume: 11, Issue: 2, Pages: 571-599

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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 selfdetermination SD Objectives of this qualitative study were to examine what the terms ‘quality of life’ and ‘selfdetermination’ 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 Semistructured interviews were conducted first followed by a focus group Linebyline 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 consumerbased 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 interventionsThe number of children and youth living with a chronic condition has increased over the last decades with advances in medical treatments Newacheck et al 2006 Yet few cures for these conditions have been found often leaving individuals with condition treatment or environmentallyrelated disabilities van der Lee et al 2007 Over the past 30 years quality of life QOL has increasingly become a key focus of health and rehabilitation care and research Moons 2006 This enhanced emphasis has been attributed to a shift away from a medical model that expects that scientific biomedical and technological advances will directly lead to cures and extended life years towards a biopsychosocial or holistic model that also emphasizes additional influences on life quality such as personal family and community factors and recognizes the complex interrelationship among all of these factors Verdugo et al 2005 The increased interest in QOL has also been linked with the rise of the consumer empowerment movement with its emphasis on personcentered service delivery valued outcomes and selfdetermination Verdugo et al 2005However the study of QOL in the area of health and rehabilitation has not been without challenges A primary concern has been the lack of clarity about what the concept means No consensus has emerged regarding its definition conceptualization or measurement Some argue that QOL is an entirely subjective and holistic assessment of life overall Moons 2006 while others see it as multidimensional and comprised of numerous subjective and objective domains of life Verdugo et al 2005 QOL is often used interchangeably with other concepts such as healthrelated QOL HRQOL happiness life satisfaction or wellbeing Opinions about the worth of the QOL concept range from the standpoint that it is equivocal Gutenbrunner et al 2011 extends beyond the realm of what health and rehabilitation services should be expected to address Meyer et al 2011 and may not be measureable Tesio 2009 to the view that it is a primary goal and outcome of health and rehabilitation services Anderson and Burckhardt 1998 King et al 2002 Despite ongoing debate focus on QOL is now widely present in the literature and is generally accepted as a legitimate area of health and rehabilitation research and an important outcome of clinical practice Consequently continued study of how to define and measure this concept has strong relevance with regard to helping to move the field forwardQOL conceptual frameworks and measurement tools used within health and rehabilitation may contain any number of indicators or distinct domains An analysis of the literature on individualreferenced QOL by Schalock 2004 yielded 125 indicators that could be subsumed under eight core QOL domains physical wellbeing emotional wellbeing personal development selfdetermination interpersonal relations social inclusion material wellbeing and rights While most QOL/HRQOL questionnaires have been developed for adults with chronic conditions a number have also been created for children and youth with chronic conditions Detmar et al 2006 However most of these pediatric QOL measures have been developed based on “expert” and/or parental opinion with little to no input from children and youth Detmar et al 2006 This is unfortunate as research has indicated that children as young as 5 years can competently report on their health and disability Rebok et al 2001 Young et al 1996 Thus rather than relying on expert opinion or proxy reports it is both possible and essential that QOL/HRQOL questionnaires and studies focus on personal definitions and descriptions of QOL generated by children and youth themselves McEwan et al 2004

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