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Purpose

Patient and public involvement (PPI) is becoming more common in research, but has been problematized for lack of diversity. While PPI literature increasingly focuses on assessment of PPI on research, a focus on the contributors is less common. This study tracked the experiences of involvement among four refugee parents involved as public contributors in a child mental health trial, over three years.

Methods

The study used a longitudinal qualitative design with focus group discussions. Data were analysed using thematic analysis combined with a longitudinal analysis approach.

Results

The refugee parents' motivations for being involved changed from focusing on individual benefits to societal change. They initially viewed themselves as guests, which transformed into utilizing the group for social support. Time impacted trust-building positively, with continued collaboration strengthening trust. Practical aspects were dominant in the beginning, which shifted over time to allow more focus on research. They identified several learnings they gained from involvement. A discrepancy in how parents and researchers viewed involvement was identified, where parents saw researchers as owners of the research.

Conclusions

To sustain successful PPI collaboration over time, researchers need to prioritize investment in time and resources, in communication, including working with interpreters, and in continued adjustments.

Although participatory approaches in health research are increasingly used, critical voices are being raised around lack of diversity among the public contributors involved. This article explores enabling and hindering factors in participatory meetings with forced migrants involved as public contributors in health research, using a convergent parallel mixed methods design including behavioural observations and questionnaires, with the aim of contributing to practices of meaningful and inclusive involvement in research. Our findings indicated that relationship-building and adapting to team development over time were key. Additionally, researcher responsivity and transparency enabled relevant contributions, but few decisions were taken. Although linguistic barriers existed and were rated higher by the researchers, engaging interpreters as co-facilitators of the meetings enabled nuanced discussions. In addition to following PPI recommendations, involving public contributors with experience of forced migration requires considering relationship-focused factors; inclusive communication, relationships and trust, and process-focused factors: where and how decisions are taken.

IntroductionMany 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.MethodsThis 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.FindingsFour 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.ConclusionAt 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.

In this article, we applied empirical ethics to the topic of patient and public involvement (PPI) with forced migrants. We know that PPI has positive impact on research, but the empirical knowledge around the ethical aspects of PPI with forced migrants is largely unknown. We analysed empirical material to identify ethical issues, using thematic analysis, and discussed these in relation to research ethics principles as well as relational ethics.