Elin Inge: Patient and public involvement with forced migrants: Exploring communication, ethics and public contributor experiences

Abstract

The topic of this thesis is patient and public involvement (PPI) in health research. Here, PPI is defined as the active involvement in key research decisions of people whose lives are at the centre of the research. Currently, there is an increased interest in and development of participatory methods. In Sweden, PPI has acquired growing attention in health research. However, the use of PPI in Sweden, as well as the structures supporting researchers and public contributors, are not yet established. The PPI field has been criticised for lacking diversity and fair representation of the researched groups. One group rarely involved as public contributors in PPI is forced migrants. Doing research with rather than about forced migrants, has the potential to alleviate asymmetries of power and knowledge, and reduce health inequities – if conducted in a meaningful way. 

The overall aim was to explore patient and public involvement with forced migrants in health research. Four studies were conducted. The study designs built on and complemented each other in terms of data, analysis methods and level of detail. Study I used a longitudinal qualitative approach to track the experiences of refugee parents during their involvement in a three-year child mental health trial. In Study II, enablers and barriers to PPI meetings with forced migrant public contributors were identified using a mixed methods approach. Study III evaluated the communication strategies in a research project with refugee youth coresearchers, with a focus on epistemic injustice. In Study IV, ethical issues in PPI with forced migrants were empirically investigated and analysed using relational ethics.

The findings show similar patterns from different perspectives. PPI with forced migrants required considerations around inclusive communication, relationship-building and trust, as well as considerations around where and how decisions were made. For these processes to develop, time and a focus on relationships is required. Using relational ethics and a reflexive approach can help researchers navigate ethical PPI with forced migrants. In the Swedish setting, PPI needs to be acknowledged on an institutional level, to create conditions to work with PPI in meaningful and ethical ways.