Making Public Involvement in Research More Inclusive of People With Complex Speech and Motor Disorders: The I-ASC Project

Abstract

In this study, we aimed to identify processes that enabled the involvement of a person with complex speech and motor disorders and the parent of a young person with these disorders as co-researchers in a U.K. research project. Semi-structured individual and focus group interviews explored participants’ experiences and perceptions of public involvement (PI). Sixteen participants were recruited, with representation from (a) the interdisciplinary project team; (b) academics engaged in discrete project activities; (c) individuals providing organizational and operational project support; and (d) the project’s two advisory groups. Data were analyzed using Framework Analysis. Five themes were generated: (a) the challenge of defining the co-researcher role; (b) power relations in PI; (c) resources used to enable PI; (d) perceived benefits of PI; and (e) facilitators of successful PI. Our findings provide new evidence about how inclusive research teams can support people with complex speech and motor disorders to contribute meaningfully to co-produced research.

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 …”

“…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:…”

“…AAC may include electronic devices (e.g., speech‐generating devices), tools (e.g., picture communication symbols on paper‐based boards), or strategies (e.g., gestures, head nods) to involve youth with severe communication disabilities to participate more productively in expressing their healthcare needs 22,23 . Because youth who use AAC require a greater level of communication support to facilitate their involvement in research, researchers may perceive this as requiring extra time and effort 17,24 …”

“…Implicit to these rights is the acknowledgement of their agency to express themselves, to have autonomy over their bodies, and to engage in decision‐making over their healthcare needs 33 . In fact, health interventions such as health‐related materials are more likely to be relevant and impactful when youth with severe communication disabilities are involved in the development process with researchers 17,34 …”

The Views of People Living with Chronic Stroke and Aphasia on Their Potential Involvement as Research Partners: A Thematic Analysis

“…They highlighted individualism, the uniqueness of each person with stroke-induced aphasia, and the need to share personal perspectives and experiences about the impact of the loss of communication within the research team, as these are topics often ignored by researchers [40]. The results are in line with the evidence from other clinical populations that have communication impairment and difficulties with access to research involvement, for example, people with complex speech and motor disorders [41]. Discussion on motivation also emerged from the PWA group.…”