Participant permanence: Exploring and enhancing experiences of research involvement in UK adults with vision impairment through an Online Participant Engagement Network (OPEN)

For individuals with vision impairment (VI), there can be physical and technical barriers to participating in research and accessing research outputs. As a result, researchers often target smaller VI samples and individuals with VI are left under-involved and underrepresented in the VI research discourse. This study aimed to evaluate the accessibility and utility of the Online Participant Engagement Network for Vision Impairment Research (OPEN VI Research) and explore the broader experiences of research involvement in individuals with VI to develop guidelines for researchers studying this area. Qualitative data were collected through a semi-structured focus group with seven adults with VI, and analysed using a dual inductive reflexive thematic analysis approach. Three overarching meta-themes emerged through the analysis: ‘access’, ‘participant permanence’ and ‘motivation’. It was identified that preferences for being reached to take part in research and optimisation for accessible web-design differed based on individual needs associated with varying levels of VI. The importance of researchers recognising participants with VI as active contributors, before, during and after participation, was also outlined. In addition, despite some participants expressing negative experiences of researchers failing to follow-up post-participation, it was found that focus group members remained highly motivated to continue to take part in research. To address these findings, guidelines for researchers were developed based on participant suggestions and discussed in relation to relevant literature. This study fills the gap in the literature on individuals with VI’s views and experiences of research involvement and the suggested guidelines have the potential to improve the accessibility and effectiveness of the practice of researchers of VI.