'I know how I feel': listening to young people with life-limiting conditions who have learning and communication impairments

Abstract

UK government policy advocates involving children in decisions about their lives. However, disabled children are often marginalized and not consulted, especially those with learning and communication impairments. Drawing on an ongoing English Government funded longitudinal study exploring different groups of service users' choices, this article demonstrates the important contribution that qualitative research methods, especially non-traditional methods, can procure when working with young people who are non-verbal or have limited speech. Working with young people with life-limiting conditions raises some specific challenges for researchers. Here, adapting project wide materials and research methods in order to gain some thematic continuity across different service user groups. Some of these considerations and challenges will be discussed, especially the development of non-verbal forms of communication (talking matsTM). Practical experiences, both positive and negative will be examined. The article concludes by considering some wider implications of using symbols based methods for future research and how these methods can be used across disciplines and by practitioners in their everyday work