Parents' and professionals' perceptions of Quality of Life in children with speech and language difficulty

Background: The true impact of speech and language difficulties (SaLD) on children's lives and the effectiveness of intervention is unknown. Within other fields of paediatric healthcare, clinicians and policy‐makers are increasingly emphasizing the utility of Health‐Related Quality of Life (HRQoL) studies and measures. SaLT has a variety of measures to assess and treat children's ‘quantity’ of life, but also requires measures that allow it to measure and even target their Quality of Life. Aims: To provide novel, primary data on the HRQoL of children with speech and/or language difficulties. Methods & Procedures: The study used a qualitative methodology to begin the process of developing knowledge about HRQoL in children with SaLD. Focus group interviews were held with parents and professional carers of children with SaLD, and participants were encouraged to reflect on their experiences and beliefs around HRQoL issues for these children. The discussions within these groups were tape‐recorded and analysed using the principles of grounded theory and content analysis. Outcomes & Results: Analysis of tape‐recorded data identified ten descriptive themes related to children with SaLDs HRQoL. These themes were labelled: Inclusion; Behaviour and reactions of others; Education and awareness; Friendships and family relations; Schooling; The child's needs; Dependence/independence; Quality of care; Choice and potential; and Variability. The results can be seen as lying on a spectrum, with factors outside of the child at one pole, the individual child's characteristics at the other, and the interaction between the child and significant others in the middle. A number of the themes reflected a common belief, across all groups, that the HRQoL of children with SaLD is influenced by the behaviours, attitudes and beliefs of people surrounding them. In addition, participants' beliefs that the quality of a child's social integration, relationships and care are also related to their HRQoL. Conclusions: These are encouraging results, indicating that children with SaLD experience HRQoL issues associated with their communication impairments. The results support the suggestion that speech and language therapists should ensure that their assessments and interventions account for both a child's impairment and also factors related to well‐being reflected in the themes presented here. However, this was also a small‐scale study and consequently further research of this type, with a larger and more varied population, is necessary so that HRQoL issues for all clinical sub‐groups of children with SaLD can be explored.