Children with speech, language and communication needs their perceptions of their quality of life

Background This study is part of a programme of research aiming to develop a quantitative measure of quality of life for children with communication needs. It builds on the preliminary findings of Markham and Dean 2006, which described some of the perception's parents and carers of children with speech language and communication needs had regarding children's experience of quality of life. However, this earlier study did not observe and evaluate the perceptions of children themselves and consequently left a vital gap in the evidence. The study reported here seeks to address this by describing the quality of life experiences reported by children and young people themselves. Aims The study aimed to provide a qualitative, childcentred, description of the quality of life experiences of children and young people with speech language and communication needs. Methods & Procedures The study used a qualitative methodology to provide a credible and thick description of the quality of life experiences of children and young people with speech language and communication needs. Children and young people participating in the study were selected to represent a range of speech and language pathologies, according to their capacity to comprehend and participate within the datacollection activities. A modified focus group technique was used as a method of data collection and data were analysed according to the principles of Grounded Theory and Framework analysis. Outcomes & Results Seven focus group interviews were conducted with a range of children and young people in fulltime education and in receipt of speech and language therapy. The data showed a number of key themes regarding children's quality of life experiences. These themes ranged from the participant's perceptions of what improves their daily lives to the difficulties they experience and consequently the negative impacts perceived on their quality of life. Conclusions & Implications This study illuminates the quality of life experiences of children with speech language and communication needs. The findings are of direct benefit to clinicians, researchers, and policymakers alike as they broaden the understanding of children's speech and language difficulties. Despite the potential bias inherent in qualitative research with children, the findings provide support for the development of a quality of life scale for children with speech language and communication needs. Such an outcome measure would enable clinicians and researchers to quantify children's quality of life, thereby broadening the range of clinical outcomes available.