Abstract

Many researchers want to include seldom involved groups, such as refugees and youth, in patient and public involvement (PPI), but experience a number of barriers. The PPI research community calls for critical evaluations that are prospective, data-based and conducted by researchers and public contributors together. In this study, we conducted a longitudinal evaluation of a core activity in all collaborations: communication strategies. The aim was to evaluate the communication strategies adopted throughout a research project with refugee youth coresearchers. This article is based on the evaluation of a project where refugee youth were involved in the online adaptation of a group-based programme for youth with posttraumatic stress. Behavioural observations and field notes collected during the project were analysed with qualitative content analysis and a readability index, and discussed through the lens of epistemic injustice. The article was cowritten by researchers and refugee youth. Four manifest categories were identified: Facilitating engagement through coplanning and circumstantial flexibility; Different needs require different channels; It's not just about the channel-facilitation skills matter; Finding a common language opens a communicative flow. In addition, a latent underlying theme reflecting the role of trust was identified: Interactive moments facilitate trust-trust facilitates richer involvement. At the core of the identified communication strategies were strengthening relationship-building and actively facilitating involvement. Establishing trusting relationships enabled refugee youth to share input. The communication strategies increased hermeneutical justice by contributing to a common understanding; thus, taking a step towards ameliorating epistemic injustice. This article is a participatory analysis of a PPI process; it was written in collaboration between researchers and refugee youth coauthors, who were all previously involved in the evaluated project.

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