Child, family and professional views on valued communication outcomes for non-verbal children with neurodisability: A qualitative meta-synthesis

Background: There are many children with neurodisability who are unable to rely on speech to communicate and so use a range of augmentative and alternative communication (AAC) methods and strategies to get their message across. Current instruments designed to measure the outcomes of speech and languagetherapy interventions lack specific attention to communication outcomes that are valued by non-verbal children with neurodisability, their families and support networks. This qualitative meta-synthesis was conducted to identify valued communication outcomes to inform the next stage of developing a novel outcome measure.

Aims: To systematically identify and synthesise the qualitative evidence aboutwhich communication outcomes non-verbal children with neurodisability, their family members, healthcare professionals and educators think are important toachieve, specifically which communication outcomes are most valued by: (1)non-verbal children with neurodisability; (2) parents or other family members ofnon-verbal children with neurodisability; and (3) professionals who work withnon-verbal children with neurodisability.

Methods & Procedures: A systematic search of bibliographic databases and the grey literature was undertaken to identify qualitative studies that included evidence of views expressed by children, family members, healthcare professionalsand educators on outcomes in relation to the communication of non-verbal children with neurodisability. All papers meeting the inclusion criteria were quality appraised using the Critical Appraisal Skills Programme Qualitative checklist,although none were excluded on this basis. The data synthesis involved organising coded data into descriptive themes which were then synthesised into analytical themes.

Main Contribution: We found 47 papers containing qualitative data meeting the inclusion criteria from research situated in 14 countries. The views of 35 children, 183 parents, six other family members, 42 healthcare professionals and 18 educators are represented in the review. The included studies contained very few data reported by children themselves; most data were provided by adults, especially parents. Three main analytical themes were identified: Experiences of communication and expectations; adapting to and acceptance of AAC; and becoming an autonomous communicator.

Conclusions & Implications: This meta-synthesis brings together the limited qualitative research findings about what parents, professionals and children consider are important communication outcomes for non-verbal children with neurodisability. The synthesis identifies key gaps in our knowledge about the perspectives of children and their siblings. This synthesis will inform primary research to understand valued communication outcomes in this group, and ultimately the development of a patient-reported outcome measure (PROM) that can be used to demonstrate the effect of interventions, at both clinical and service levels.