This case study is taken from the 'Ethics in community-based participatory research: Case studies, case examples and commentaries' publication produced by Durham University. This document supports the 'Community-based participatory research: A guide to ethical principles and practice'. Both of these documents can be found in full here here.
What: A co-inquiry action research group
Why: To consider themes generated by a literature review
Where: Durham University
A co-inquiry action research (CAR) group comprising community partners and university researchers was established as part of a small research project funded by a UK research council. The research was a scoping study to be undertaken over eight months on the theme of ethics in community-based participatory research. The project as a whole involved reviewing relevant academic literature on this topic (largely undertaken by an academic researcher) and the formation of a CAR group, which would meet three times to consider the themes generated by the literature review in the light of participants’ own experience of ethical issues in community-based participatory research. The group comprised five community participants who had been involved with academics in various research projects; five academics from Durham and Newcastle Universities who had experience of community-based participatory research; and two administrative/development staff from a public engagement initiative that covered both universities. This group built on an earlier CAR group that had been convened to study the process of co-inquiry itself, and the first meeting of the new group was also the last meeting of the previous group. Three of the community partners were new members, whilst all the other participants had been in the previous group. The meetings took place at Durham University and were facilitated by an academic. The meetings were jointly planned by three core academics: the facilitator (responsible for the CAR group); the research associate (responsible for the literature review); and the principal investigator (who coordinated the whole project). These three academics were also part of a wider research team of Durham University academics and international advisors that focused mainly on the literature review.
Ethical issues anticipated in planning the group
Co-inquiry is an approach to research that involves a group of people working cooperatively to explore a topic or question. Whilst participants make different contributions, these are of equal value and it is vitally important that all participants show each other respect, are prepared to listen, build on the ideas of others and learn from each other. Part of the reason for forming such a group in this case was precisely to hear a range of perspectives and to value experiential knowledge (knowledge gained from doing) as much as theoretical knowledge. However, unlike the previous CAR group where the agenda was more open and group members could agree on how the work of the group developed, this group had a predefined purpose and needed to fit the prescribed timescale and outputs promised to the funding body. This invested more power and responsibility in the three core academics, as although all members had been consulted about the original funding application, it was the university staff who had written the funding bid and the university had gained the funding. For the core academics it was important to be clear about their responsibilities to the university and the funder, whilst at the same time maximising ownership and control by group members.
In order to create a participatory and respectful ethos, a number of preparations were made by the facilitator and principal investigator, examples of which are given below.
At the first meeting the group discussed and agreed some ground rules for how to work together. One learning point from the first CAR group was that it was easy for the university participants to use academic language or jargon, which community participants found off-putting and could exclude them from discussions. There was also an awareness that whilst it was desirable for all participants to talk freely, it would be important that information that people wished to remain confidential within the group should not be revealed outside or written about without permission. These points formed the basis of two ground rules for the series of workshops, which involved an agreement from everyone to do the following:
- Always use clear language – in particular, not to exclude anyone, especially non-academics, from conversations by using technical concepts or relying on expressions or idioms whose meaning would not be obvious to people unfamiliar with academic language.
- Respect confidentiality, both in how we share experiences and in discussing any aspect of the workshops elsewhere.
Payment of honoraria and provision of refreshments
In recognition of the contribution of the community partners, funding for honoraria, travel expenses and lunches at meetings was built into the budget.
Participatory framework for meetings
In order to maximise participation a range of methods was used, including work in pairs and small groups. The facilitator and principal investigator attempted to model and develop an ethos of listening, questioning, reflecting and genuine interest in each person’s contributions.
Acknowledging the contributions of all in publications
It was agreed that the report produced for the funder would acknowledge all participants, but given the group had only three meetings, it would be the core academics who took a lead in the writing up process.
Ethical issues emerging and developing
Several ethical issues emerged during the course of the project and were tackled as they occurred.
Balancing experiential with presentational and theoretical knowledge
At the first meeting community partners from the previous CAR group presented details of the toolkit they were developing for community partners engaging in co-inquiry research with universities. The research associate, who was not present, had also sent a paper outlining a draft search framework for the literature review. This resulted in a great deal of information being presented, and due to shortage of time the small group exercises planned were not undertaken. This was discussed by the group at the end of the first meeting and the two subsequent meetings were deliberately planned to be as participatory as possible.
Inclusion of new members
It was also clear at the end of the first meeting that some new members who had not been part of the first CAR group were confused about the process and purpose of the group. If less time had been spent on presentations and more on getting to know each other and sharing experiences those feelings might have been reduced. It was also recognised that first meetings are often difficult and it takes time for people to feel comfortable and for mutual trust to develop.
Whether and how to include community partners in the academic elements of the project
A literature review on ethics in community-based participatory research was a major part of the whole project and the funding bid stated that the CAR group would be involved in developing the themes to guide the search framework and in commenting on the findings. Therefore the core academics felt it was important to share the process of the literature review with the CAR group. However, not only was the process of how to do a literature review using electronic databases of journal articles rather difficult to understand, but also the identification of key themes as search terms was not something to which non-academics, or even academics who were not social scientists or specialists in community-based research, felt they could contribute. Had there been more time, this might have been addressed over several meetings. But in the short timescale available, it was clear after the first meeting that it made sense for the research associate and academic team to take responsibility for framing and conducting the literature review. At the subsequent two meetings, some of ethical issues that were emerging from the review were discussed in the CAR group and linked to members’ identification of key ethical issues based on their own experiences.
‘Academic’ ways of working
Whilst the group had identified the avoidance of academic jargon as an important ground rule, this was only one part of the story about how academics could dominate the proceedings. Academics are also very used to analysing, critiquing, summarising and interpreting the comments of others. This was highlighted in an exchange between a community partner (Carol) and academic (Alan) at the third meeting, when Alan was feeding back to the whole group what Carol and Alan had been discussing in a pair relating to details of an ethical dilemma told by Carol to Alan. Carol commented: ‘that is not what I told you!’ Alan explained he was trying to summarise, to which Carol responded:
Carol: This is what we’re getting down to: the judgement that you made upon my speech was not [my] judgement.
Alan: Probably not, I interpreted what you said.
Carol: Interpreted … you interpreted my speech with your values, your speak, your understanding of the world.
This gave an opportunity for all members of the group to acknowledge what had happened and what they could learn from it. The fact that it was handled amicably and discussed openly by Carol, Alan and the other participants was testimony to the levels of trust in the group by this point. Reflecting on this exchange later, Carol commented that the issue for her was that Alan took her story and ‘made it his own’.
Learning from the experience of working with these ethical issues
Some of the key learning points in relation to anticipating ethical issues, creating an ethical climate and tackling ethical problems and dilemmas as they arise include:
- Clarity about power and responsibility - It is important to be clear about where power and responsibility lie in relation to different aspects of a research project. If there are parts that require specific academic skills or certain outputs for funders then this should be acknowledged. Equally, thought should be given as to whether some academic processes can be demystified or adapted for use by community participants (e.g. a participatory literature review).
- Questioning and adapting traditional research methods - Translation, sharing and reworking of academic purposes and processes (such as a literature review) take time and effort. If more thought had been given at stage of designing the research, perhaps a different type of scoping study could have been undertaken without an academic literature review.
- Setting the tone at the first meeting - The first meeting of a collaborative research group is important in setting a non-threatening tone and participatory ethos. It is vital to hear from everyone, allowing people to start from their own experiences and to feel respected and valued.
- Questioning traditional academic ways of working - Academics need not only to avoid academic jargon, but also to modify their styles of critical analysis and interpretation.
- Time for building trust - It takes time to build a group and generate good working relationships. In this group, by the third meeting people were more relaxed and able to speak out and challenge each other.
- Reimbursement – Payment of honoraria as well as travel expenses for community partners is important, especially in the current economic climate. Participants valued this and one of the community partners commented: ‘I found the first meeting quite daunting. I might not have come back if there had not been an honorarium. Payment indicated that my participation was valued by the group’.
- Writing up as a learning process - Even if a few people take a lead in writing up, the iterative process of developing drafts, incorporating new insights and amendments from all participants is an important part of the learning experience. Writing up may continue after a research project has ended and it is important to allow time to continue to involve people in the process. The authorship of the final report was attributed to ‘Durham Community Research Team’, with all participants listed at the start of the report.
- Genuine co-production is time-consuming and challenging - In an ideal world, community partners would co-design the research project; the CAR group would be co-facilitated by an academic and community partner; and more work would be done by the group on creating the agenda and co-writing the outputs. For this particular research project, that ideal was not possible. But in future projects, with the levels of confidence, expertise and trust developed by community partners from working in this CAR group and an increasing awareness on the part of funders of the crucial role of community co-researchers, some further steps might be taken towards this ideal. But the time and commitment this would take should not be under-estimated.
Questions for discussion
- One of the issues raised in this case study is the inaccessibility of academic literature reviews. How might it be possible to conduct more participatory reviews, whilst still covering academic journal articles?
- Under the heading ‘academic ways of working’, Carol objects to Alan taking her story and making it his own. What do you think is going on here and how would you carry on the conversation if you were either Carol or Alan?
- What is the most important lesson for you from this case study?
Contributed and written by Sarah Banks, Andrea Armstrong, Kath Carter, Tessa Holland and Ann McNulty.
For further details of this project see:
Durham Community Research Team (2011) Community-based participatory research: ethical challenges: www.dur.ac.uk/resources/beacon/CCDiscussionPapertemplateCBPRBanksetal7Nov2011.pdf
Contact Sarah Banks email@example.com