The most important aspects of quality of life for New Zealand adolescents with physical disabilities
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Background Improving quality of life (QoL) is increasingly identified as an important outcome of health and social care. Accurate measurement of QoL is important for young people because it can be used to help understand their needs, to evaluate interventions, to identify at risk adolescents and to enable education and health organisations to plan and monitor programs. Research exploring QoL from the perspective of adolescents with physical disabilities is limited, particularly from a New Zealand perspective. Aims The purpose of this qualitative study was: (i) To explore the most important aspects of quality of life (QoL) for New Zealand adolescents with physical disabilities, from the perspective of the adolescents themselves, their families, teachers and therapists. (ii) To compare findings with existing measures of adolescent QoL. Methods The study utilised a methodology as approved by the WHOQOL group (Geneva), and derived by the DIS-QOL Project, 2005, (Lead centre: The University of Edinburgh). Six focus groups were held: two with adolescents (including one group of Maori and Pasifika adolescents), two with parents and one group each of teachers and therapists. The recruitment process used purposeful sampling aiming to get variation in age, gender, ethnicity, type and severity of disability. The focus groups were tape recorded and transcribed verbatim. Data was analysed manually using content analysis, constant comparison and negative case analysis to establish themes and categories. Findings Four key themes emerged from the data regarding the most important aspects of QoL for adolescents with physical disabilities: (1) to be recognised as an individual; (2) to have autonomy; (3) to have meaningful relationships; and (4) to have purposeful opportunities (to contribute and achieve in society). When compared to existing adolescent QoL measures, some aspects of these themes were supported. However, several fundamental components of QoL highlighted by the participants were not considered in these measures including: to be seen as an individual and have an identity outside that of being a person with a disability, to have the opportunity to make choices and be supported in those choices, to have a voice in the community and to have privacy. Significance This study contributes to the body of knowledge regarding what New Zealand adolescents with physical disabilities consider to be important in terms of QoL. It also contributes to the body of knowledge regarding the perspective of Maori and Pasifika adolescents with physical disabilities. The findings have identified areas not addressed in current adolescent measures of QoL and can be used to contribute towards developing a conceptual framework for QoL for adolescents with physical disabilities. This framework could then be used to develop measures which can then be validated in this population. This study also shows the importance of working in partnership with young people. Research that does not include adolescents in the generation of ideas has the potential to miss concerns critical to their development.