A methodological reflection on investigating children’s voice in qualitative research involving children with severe speech and physical impairments

Abstract

A methodological reflection on investigating children's voice in qualitative research involving children with severe speech and physical impairments, Disability & Society,

The involvement matrix as a framework for involving youth with severe communication disabilities in developing health education materials

“…In alignment with a participatory and inclusive research agenda, we have described one example of an alternative tool that researchers could apply to involve youth with disabilities in research. As such, our findings situate themselves within a greater body of current research focused on applying frameworks and tools to involve youth with disabilities in codeveloping health interventions 3,15,17,34,41 …”

“…Previous literature has highlighted that often health materials, tools, and technologies for youth and children with disabilities are developed by researchers without consideration of the unique role and perspectives of youth 14–16,20 . In alignment with a participatory and inclusive research agenda, we have described one example of an alternative tool that researchers could apply to involve youth with disabilities in research.…”

“…12,14 Rarely are they brought to the centre of the research process where they are valued for their expertise and their involvement in health research. [15][16][17] Three factors may contribute to their exclusion in health research involvement: First, severe disabilities manifest during the developmental years, and may be expressed as permanent, life-long intellectual disability with associated physical impairment (e.g., quadriplegia), sensory impairment (e.g., loss of vision) or other chronic health conditions (e.g., epilepsy). 18,19 Due to the presence of developmental disabilities, researchers may have negative assumptions of the capability of youth with severe disabilities to be involved in research in a meaningful way.…”

“…Moreover, when they are consulted about their opinions, they are usually recruited as research participants on whom research is conducted 12,14 . Rarely are they brought to the centre of the research process where they are valued for their expertise and their involvement in health research 15–17 . Three factors may contribute to their exclusion in health research involvement:…”

Minority language education: Reconciling the tensions of language revitalisation and the benefits of bilingualism

“…However, it is crucial not to position children's views and experiences as less authentic or untruthful, but instead position their views as multi‐layered (Spyrou, 2011). Further, the concern of bias can be somewhat alleviated by the utilisation of multiple methods which has allowed for the triangulation of the multidimensional understandings of children's experiences (Ibrahim et al, 2021).…”