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

Abstract

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 language therapy 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 about which communication outcomes non-verbal children with neurodisability, their family members, healthcare professionals and educators think are important to achieve, specifically which communication outcomes are most valued by: (1) non-verbal children with neurodisability; (2) parents or other family members of non-verbal children with neurodisability; and (3) professionals who work with non-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 professionals and 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.

WHAT THIS PAPER ADDS

What is already known on the subject

• Studies of children with cerebral palsy and autism spectrum disorder indicate that at least 25% of children with these conditions are non-verbal. Studies on the health outcomes of children with neurodisability have identified that communication is rated as important by parents and health professionals. There is an evidence gap about which communication outcomes are important to non-verbal children, their families and the people who work with them.

What this paper adds to the existing knowledge

• This is the first synthesis of data that relates to communication outcomes for non-verbal children with neurodisability. This qualitative meta-synthesis identifies from previous research studies the communication outcomes valued by children who are non-verbal, their parents or other family members, and the professionals who work with them. The findings will be used to shape further primary research and the development of a novel patient-reported communication outcome measure for non-verbal children with neurodisability. It is anticipated that this will be used by clinicians to measure the effect of their interventions.

What are the practical and clinical implications of this work?

• Clinicians should reflect on parents’ experiences of communication with their child before discussing potential outcomes with them. Gaining insight into the lived experience of communication for non-verbal children and their families will help healthcare professionals to understand which goals are important to them and why. Few studies have specifically asked which communication outcomes are important for non-verbal children with neurodisability. Further exploration is needed to determine which communication outcomes non-verbal children and their families would like to see included in outcome measures used by clinicians.