Chris Markham

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 perceptions parents and carers of children with speech language and communication needs had regarding childrens 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, child-centred, 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 data-collection 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 full-time education and in receipt of speech and language therapy. The data showed a number of key themes regarding childrens quality of life experiences. These themes ranged from the participants 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 policy-makers alike as they broaden the understanding of childrens 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 childrens quality of life, thereby broadening the range of clinical outcomes available.

Development of a quality of life measure for children and young people with speech, language, and communication needs

Childrens speech and language difficulties affect more than their communication skills, impacting on their experience at school, relationships, and later employment opportunities. These wider sequelae, arguably, contribute to a childs quality of life (QoL), which is routinely measured in the care and research of other childhood conditions, but no measures exist for childrens communication needs. Using a psychometric approach, a new QoL measure for children with speech, language, and communication needs was developed. Pretesting produced a clinically acceptable measure, which was then completed by 303 children and young people with speech, language, and communication needs (SLCNs) in a field test. This field test provided a psychometric basis for the reduction of items in the measure into statistically coherent subscales. The “Paediatric Speech and Language QoL” Scale (Ped SaL QoL) appears to be an acceptable, reliable, and valid measure of condition specific QoL for children with SLCNs. It would seem to have potential for use in both clinical practice and investigations of treatments in speech and language therapy. Further testing in larger, more representative samples of children with SLCNs is needed to further establish its reliability and validity and its potential for use as an outcome measure in clinical trials. Source of funding: The research was funded by the National Institute for Health Research Grant RDA 01/05. The research was conducted according to the Declaration of Helsinki and received a favorable opinion from a National Health Service Research Committee (Rec. No. Q1701/47).

A pilot study to evaluate the effectiveness of an individualized and cognitive behavioural communication intervention for informal carers of people with dementia: The Talking Sense programme: Individualized communication CBT for dementia carers

BACKGROUND People with dementia and family carers often experience difficulties communicating together. These difficulties are considered to contribute significantly to the depression, anxiety and negative feelings such as guilt often reported by dementia family carers. AIMS To develop and contribute to the theory and evidence base for single-component, psychosocial interventions that address these difficulties by evaluating the effectiveness of the Talking Sense programme which was designed to reflect existing best evidence. METHODS & PROCEDURES Talking Sense was delivered as an individualized, one to one, cognitive behavioural approach for developing knowledge, skills, thinking and behaviour of dementia family carers in managing communication difficulties. In this study, a randomized controlled trial compared 27 carers who completed three one-to-one individualized sessions using Talking Sense with 25 carers who received a single, knowledge-only, control discussion. OUTCOMES & RESULTS There were no significant differences for the primary outcome measure of carer anxiety and depression as well as carer quality of life and general self-efficacy. Statistically significant results suggested carers receiving the Talking Sense intervention had fewer communication difficulties happening (p = 0.046) and felt more valued by their relatives (p = 0.046). A score close to significance (p = 0.052) suggested they perceived their relatives to be more communicatively competent. CONCLUSIONS & IMPLICATIONS The intervention and research design were shown to be effective with low attrition and high adherence to treatment. A non-significant finding for the primary outcome measure does not support the potential for this intervention to effect carer anxiety and depression. The potential for perceived change in the person with dementia, with statistically fewer communication difficulties happening and the carer feeling more valued by their relative, was the most significant finding from this programme of research. Recommendations for further research are made.