Parents’ views on important outcomes for children with SLCN

Interventions for children with SLCN have tended to be evaluated based primarily on language outcomes. However, practitioners often have broader aims, such as to improve children’s independence or participation. The study aimed to listen to the views of parents about outcomes that they value for their children with a broad range of speech, language and communication needs (SLCN). It will inform evaluation of interventions for children with SLCN. The study was part of the Better Communication Research Programme, commissioned by the Department for Education in the UK to investigate best practice and cost effectiveness of services for children with SLCN. Methods Phase 1: Five focus groups were held in different regions of the UK. Parents were recruited through national and local support groups. The fifth focus group was conducted after analysis of the first four and was designed to verify findings from previous groups. Groups were audio recorded, transcribed and analysed thematically. Emerging codes and themes were checked and agreed by the second and third authors. Phase 2: Findings from phase 1 informed the development of a questionnaire that investigated parents’ views on a larger scale and any hierarchy in the outcomes that parents valued. Parents were also asked about timescales they find useful for goal setting with their children. An online questionnaire was piloted and distributed by national and local support groups and contacts in special schools. Results Phase 1: Twenty one parents of children with SLCN between 4 and 18 years (mean age 12 years) took part in focus groups. Two key themes emerged: to be included and to be independent. The goal of functional communication underpinned these two themes in that parents saw improvement in children’s communication skills as the means to achieve the other two. Phase 2: Ninety parents completed the survey. Respondents’ children ranged between 4 months and 18 years;11 months, mean age 10 years;4 months, and had a variety of SLCN with the majority of children having more than one difficulty or diagnosis. Most common SLCN included autistic spectrum disorder (ASD, 57%), learning difficulties (44%), expressive difficulties (40%), receptive difficulties (32%), dyspraxia (23%), specific language impairment (SLI) (20%) and speech sound disorder (SSD, 18%). In terms of outcomes that parents valued for their children, independence (83%) and staying safe (82%) were most frequently rated as very important. Communication (77%), inclusion (71%), coping with change (67%), friendships (66%) and being socially confident (60%) were rated as very important by the majority of parents. Academic achievement was only rated as very important by 22% and other achievements in school, such as art or sports was rated as very important by 10%. Outcomes valued by parents varied depending on the nature of the child’s difficulties. For example, parents of children with ASD rated coping with change as a more important outcome for their child than parents of children with other SLCN (F=5.58, p=0.02). Parents of children with receptive difficulties rated the outcomes of communication (F=6.92, p=0.01), friendships (F=4.23, p=0.04) and being socially confident (F=4.081, p=0.05) with higher importance than parents with other SLCN. Conclusions Independence, staying safe and communication skills are very important outcomes for their children according to most parents of children with a variety of SLCN. Whilst communication skills are routinely evaluated within intervention studies and services, independence and staying safe are not. Conversely, academic and school achievements are often evaluated, but these are less important to parents than other outcomes, such as friendships, social confidence and coping with change. Interventions and evaluation frameworks should take into consideration outcomes valued by parents.