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. Apatient-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.