'Sometimes I feel sad': A qualitative study on children's perceptions with cleft palate speech and language therapy.

Abstract

Evidence-based speech therapy involves the integration of (1) the scientific evidence for therapy with (2) the perspectives of clinicians concerning therapy and (3) the perspectives of patients about therapy. The cleft literature has already paid attention to the first two cornerstones of evidence-based speech therapy. Much less is known about how children perceive cleft speech therapy. The purpose of the current qualitative study was to investigate the perceptions, emotions and expectations of Flemish-speaking Dutch children with a cleft (lip and) palate (CP ± L), aged 5-12 years, with regard to the speech therapy they receive. In this study, a focus was made on speech therapy to eliminate compensatory cleft speech errors. Six children with a CP ± L, aged between 5 and 12 years, were included in this study. Child-friendly semi-structured interviews were conducted using a participatory, art-based qualitative approach. This means that the 'play and puppets technique' and 'draw-write and photo-elicitation technique' were used to guide the children through the interviews. Data derived from these interviews were analysed using an inductive thematic approach. Trustworthiness of the data was achieved by applying researcher triangulation, negative case analysis and an audit trail. Analyses of the interviews revealed three major themes of importance to the children: (1) treatment values, (2) treatment practices and (3) treatment outcomes. Each theme was divided into different subthemes. The theme 'treatment values' consisted of the subthemes expectations and emotions around therapy and interference with daily living. Information flow, therapy content, confirmation and rewards, parents' attendance, therapy intensity, and homework were subthemes of the major theme 'treatment practices'. The theme 'treatment outcomes' was divided into two subthemes, namely speech improvement and peers' reactions. Most children had positive attitudes towards speech therapy: it was 'something they liked' and 'something fun'. If children had negative attitudes they were related to having a fear of making mistakes during therapy. Children had clear expectations of the purpose of speech therapy. Speech therapy should 'help' improve their speech and make it more understandable to others. The children in this sample made some suggestions to decrease the experienced burden related to speech therapy. The results of this study will help to better tailor speech therapy programmes to the needs and experiences of children with a CP ± L. What is already known on the subject Evidence-based speech therapy involves the integration of (1) the scientific evidence for therapy with (2) the perspectives of clinicians concerning therapy and (3) the perspectives of patients and their families about therapy. The cleft literature has already paid attention to the first two cornerstones of evidence-based speech therapy. Different studies investigated the perspectives of SLPs and parents with regard to cleft palate speech therapy. However, much less is known about the children's own experiences with and perceptions around this speech therapy. What this study adds to existing knowledge This study used a qualitative research design to investigate the perceptions, emotions and expectations of children with a cleft (lip and) palate, aged 5-12 years, with regard to the speech therapy they receive. Speech therapy needed to focus on the elimination of compensatory speech errors. This study provides knowledge on the speech therapy-related experiences of children with a cleft palate. What are the potential or actual clinical implications of this work? Children in this sample made some concrete suggestions to decrease the experienced burden related to cleft speech therapy, for example, integration of school work during therapy sessions and practising on the level of spontaneous speech. The results of this study help us to better tailor speech therapy programmes to the needs and experiences of children with a CP ± L.