Self-Experienced Difficulties in Communicative Participation in Children With Speech, Language and Communication Needs—A Concept Elicitation Study

Background: Communicative participation is the most important outcome of speech and language therapy. A patient-reported outcome measure (PROM) for children would help capture this outcome. Before this PROM can be developed, it is important to find out what situations children themselves find difficult because of their communication problem. Aims: The aim of the study was to identify relevant aspects of self-reported communicative participation in children with communication disorders. Method and Procedures: Thirteen children (5–12 years old) with speech disorders, developmental language disorders (DLDs), voice disorders and/or hearing loss were interviewed with semi-structured interviews. Before the interview they kept a diary for 1 week, documenting participation situations that were difficult because of their communication problem. Within 1 week after completing the diaries, the children were interviewed. In addition, children's ability to recall situations and reflect upon communicative participation was observed. The data analysis was conducted using directed content analysis, drawing on an existing theoretical framework. Outcomes and Results: A total of 171 situations were discussed, leading to the identification of 44 concepts, categorized into the following six categories: person, topic, pace, location, moment and mode. Some of the participants had difficulty recalling situations, and reflecting upon communicative participation. This was particularly true for children under 8 years of age (all with DLD) and two children over 8 years of age with DLD and an indication for a school for children with special needs. Conclusions and Implications: The 44 concepts provide insight into the difficulties in communicative participation experienced by children themselves. These concepts will be used to develop a PROM to assess children's communicative participation. WHAT THIS PAPER ADDS: What is already known on this subject Communicative participation is the key outcome of speech and language therapy. However, there is a lack of measurement instruments (preferably patient-reported outcome measures, PROMs) to assess communicative participation of children. Additionally, children's own perspectives on their communicative participation, which could inform the development of such an instrument, have not yet been explored. What this paper adds to existing knowledge This study focuses on communicative participation situations as described by children with speech, language and communication needs (SLCN). Based on children's own experiences, 44 concepts describing communicative participation were identified. What are the potential or actual clinical implications of this work? This study enhances a comprehensive understanding of communicative participation from the perspective of children. The identified concepts can already be used in conversations with children about their communicative participation. Additionally, the findings will contribute to the development of an item bank for measuring communicative participation in children with speech, language and communication needs.