Making choices in my life: Listening to the ideas and experiences of young people in the UK who communicate non-verbally

Abstract

Service user participation and making choices are frequently advocated, however, they are complex concepts and how they are translated and/or experienced in everyday life can vary amongst different groups of service users. Recognising the importance of participation in current international guidance and UK government policy this paper seeks to explore how research can include a frequently marginalised group of disabled young people, in particular young people with learning disabilities and/or who communicate non-verbally. The paper discusses the use of non-traditional research methods, especially symbol based interviews developed in an ongoing English longitudinal study exploring choices and decision-making processes for young people with life-limiting conditions. The paper then presents some research findings and concludes by discussing their implications. In particular, it demonstrates how the use of symbol based interviews can inform policy makers about how these young people can be included in research and that listening to them can inform our understanding of decision-making processes.