Developing visual communication tools to navigate the ethical complexity of co-creating research and development with refugees

What is the project about?

In this project we develop a guide for involving refugees as co-researchers in research and development projects. The guide will be communicated in the form of a handbook, an art exhibition and training materials.

Our interest in public involvement started during a previous VR-funded project concerning a group intervention for refugee children and youth with post-traumatic stress. In that project, we collaborated with refugee children and youth, as well as refugee parents – so called public involvement in research. To assess and improve this collaboration, we collected observation and focus group data. The results were so interesting that we now have a PhD student focusing solely on public involvement processes with refugees.

The aim of this project is to summarise and communicate the practical and ethical issues that may arise in the context of public involvement with refugees with the aim of promoting good and ethical practice when researchers involve refugees in collaborations.

In this project, researchers, public contributors with a refugee background, a communicator, an art curator and an artist collaborate on how to do meaningful and ethical user involvement with refugees. Together we create three platforms:

• A handbook with a practical guide to ethical public involvement with people with refugee experience.
• An experiential art exhibition based on the experiences of user involvement.
• Training material for researchers and organisations wanting to work with public involvement

The project's research questions

In this project, we develop an ethical guide for involving refugees in research. The ethical guide, which underpins our three communication interventions, is based on data from behavioural observations and focus group discussions, and analyses of involvement processes. Based on this, the team develops a handbook and training materials. The art exhibition will reflect the lived experiences of public involvement, interpreted by a professional artist.

Participating institutions/universities

The project is run by the CHAP research group at Uppsala University, and is co-created with professionals and target group representatives. From CHAP, Elin Lampa, Georgina Warner and Anna Sarkadi participate. As target group representatives, with experience of migration and working in research, Nimo Elmi and Yasmin Cumar participate. In addition, the team consists of a communicator, Helena Conning, who also has experience as a patient representative in research, and art curator Anette Andersson, who has worked with research-based art projects, as well as a professional artist.

Links to the websites of the project participants:

CHAP - Child Health and Parenting, Uppsala University External link.

https://www.pubcare.uu.se/research/socialmedicine/ External link.

Care of Conning External link.

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