Desired outcomes for children and young people with complex health care needs, and children who do not use speech for communication

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Abstract
Within recent policies and initiatives, there is a growing emphasis on outcomes-focused practice and user-defined outcomes to ensure that the children and families most at risk of social exclusion have every opportunity to build successful and independent lives. However, we still know little about what children and young people with disabilities consider constitutes a good quality of life. The present paper reports the findings of a qualitative research project that aimed to identify the desires and aspirations of children and young people with complex health care needs (CHNs), as well as those who do not use speech for communication (NS) and their parents. Fifty families participated in this study; 26 families had a child with CHNs and 24 had a child with NS. Semistructured interviews were carried out with 50 parents, 18 children and 17 other informants (teachers and other non-parent carers who knew the child well). A range of visual or non-verbal techniques were used to facilitate interviews with children. The research found that, while children and their parents aspired to the same sort of outcomes as those of non-disabled children, such as to have friends, interests and future independence, the specific meaning they attached to certain outcomes and the way they prioritised aspirations differed. These findings have implications for the ways in which outcomes are defined and measured, and the role of services in achieving these outcomes.