Community-based participatory research: ethics and outcomes
Lead Research Organisation:
Durham University
Department Name: School of Applied Social Sciences
Abstract
This paper outlines the findings of a scoping study examining ethical issues in community-based participatory research (CBPR), based on a literature search and the deliberations of a co-inquiry action research group. The search indicated a range of research approaches claiming to be participatory and community-based, showing significant variation in degrees of participation and community control. Ethical challenges in CBPR include matters relating to: partnership, collaboration and power; community rights, conflict and representation; ownership and dissemination of data, findings and publications; anonymity, privacy and confidentiality; institutional ethical review processes; and blurred boundaries between researcher and researched, academic and activist. While many of these issues are common in qualitative social research, what is distinctive about CBPR is the openness, fluidity and unpredictability of the research process. It is often complicated by multi-layered partnerships based on the negotiation of power relations between diverse groups (with specific histories, politics, cultures and personalities), whilst also being constrained by rigid structures of research governance. Recommendations include: the adoption of specific ethical guidelines for CBPR by UK researchers, funders and sponsors; ethnographic research on the CBPR process; a search of grey literature for accounts of CBPR from community perspectives; and further longitudinal research on outcomes of CBPR.
Organisations
Publications
Banks S
(2013)
Everyday ethics in community-based participatory research
in Contemporary Social Science
Centre For Social Justice And Community Action
(2013)
Tackling Ethical Challenges in Community-based Participatory Research
Centre For Social Justice And Community Action, Durham University
(2012)
Community-based participatory research. A guide to ethical principles and practice
Centre For Social Justice And Community Action, Durham University
(2014)
Gwneud ymchwil ar cyd:Sut i wneud yn siwr bod pethau'n deg ac nad oes neb yn cael niwed
Centre For Social Justice And Community Action, Durham University
(2014)
Beth yw gwyneud ymchwil ar y cyd?
Centre For Social Justice And Community Action, Durham University
(2013)
Doing research together: How to make sure things are fair and no one is harmed
Centre For Social Justice And Community Action, Durham University
(2013)
What is doing research together?
| Title | Forum Theatre: Participatory ethics through participatory theatre |
| Description | An 8-minute film produced by the Centre for Social Justice and Community Action, Durham University, UK and LGBT Youth NW, Manchester, about communities and universities working together to develop ethical research to accompany the booklet, Performing ethics. |
| Type Of Art | Film/Video/Animation |
| Year Produced | 2014 |
| Impact | The film has been used in running training workshops on participatory theatre through participatory ethics - contributing towards developing the awareness and understanding of ethical issues of workshop participants, who may be community partners, postgraduate students, and academic researchers. The film has also been placed on the National Coordinating Centre for Public Engagement website, used by NCCPE to raise ethical awareness and illustrate the use of participatory theatre. |
| URL | http://www.youtube.com/watch?v=nzzl60EihC4 |
| Title | Four short films relating to ethics in community-based participatory research |
| Description | Four films 1. A coinquiry group - relating to a group of academics and community partners studying research ethics together 2. Growing ethics - relating to a community-university research partnership focusing on a young women's allotment project 3. Breaking down barriers - covering the work of Lawnmowers Theatre group (people with leanrig disabilities) and its partnership with an academic 4. Durham Conference, Feb 2013 - an overview of highlights from a conference focusssing on ethical challenges in CBPR |
| Type Of Art | Film/Video/Animation |
| Year Produced | 2012 |
| Impact | The films are used in running training workshops on ethics in CBPR, and contribute towards developing the awareness and understanding of ethical issues of workshop participants, who may be community partners, postgraduate students, and academic researchers. The films have also been placed on the National Coordinating Centre for Public Engagement website, used by NCCPE to raise ethical awareness. |
| URL | https://www.dur.ac.uk/beacon/socialjustice/ethics_consultation/films/ |
| Description | This project was developed as a result of the findings of a previous Connected Communities research project that there were many complex ethical challenges in community-based participatory research; and that there was a need for ethical guidance and further resources to support community partners and academics in planning and doing this kind of research. The final version of the ethics guide is based on these principles: Ethical principles 1. Mutual respect 2. Equality and inclusion 3. Democratic participation 4. Active learning 5. Making a difference 6. Collective action 7. Personal integrity Practice principles and guidelines 1. Preparing and planning 2. Doing the research 3. Sharing and learning from the research |
| Exploitation Route | The ethics guide and accompanying case materials, films, and podcasts will be useful to community-based organisations planning and delivering participatory research. It will also be of use to research funders and research ethics committees in helpiong them tailor their research guidance and procedures to fit CBPR. |
| Sectors | Communities and Social Services/Policy,Education,Energy,Environment,Healthcare,Culture, Heritage, Museums and Collections |
| URL | http://www.publicengagement.ac.uk/about/ethics |
| Description | AHRC has used the ethics guide in Connected Communities funding calls. Many community and voluntary sector organisations are using the ethics guidelines The ethics guide was used as the basis for a statement of principles for the International Collaboration on Participatory Health Research |
| First Year Of Impact | 2013 |
| Sector | Communities and Social Services/Policy,Education,Environment,Healthcare,Leisure Activities, including Sports, Recreation and Tourism |
| Impact Types | Cultural,Societal,Policy & public services |
| Description | Action research for social justice seminar |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | 1. Action Research for Social Justice: Changing the Climate for Research and Teaching, Durham University, Wednesday 17th June 2015, 12.30-13.45 a) What happened - a presentation and group discussion with Mary Brydon-Miller, Miriam B. Raider-Roth, Lisa M. Vaughn, University of Cincinnati, USA. b) Participants: 25 people attended from community organisations, university staff and postgraduate students. c) Summary of any feedback received - useful to hear examples of different approaches and projects. d) Any learning/reflections - we can learn a lot from researchers from other countries. e) Any follow-up activities - development of partnership between research centres in Cincinnati and Durham. |
| Year(s) Of Engagement Activity | 2015 |
| URL | https://www.dur.ac.uk/beacon/socialjustice/ccfestival2015/ |
| Description | Conference, workshops, presentations (2012-13) |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Type Of Presentation | workshop facilitator |
| Geographic Reach | International |
| Primary Audience | Public/other audiences |
| Results and Impact | Engage 2012 Conference, Bristol, Dec 2012. Postgraduate research training, Newcastle University, Jan 2013. Tackling ethical issues in CBPR, Conference, Durham, 28 Feb 2013. Ethical Challenges in CBPR, Public Lecture, Huddersfield University, 6 March 2013. Ethics in CBPR, Workshop, London, 11 March 2013. Connected Communities Showcase, London, display stand, 12 March 2013. Ethics in CBPR, session on training course for international participatory health research, Northumbria University, 13 March 2013. Presentation, Faculty of Social Sciences and Health Research Ethics Committee, Durham University, 13 March 2013. Various conferences, workshops and presentations, which promoted and used the ethics guide and case studies |
| Year(s) Of Engagement Activity | 2012 |
| Description | Dilemmas Cafe (Manchester, September 2015) |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Dilemmas café facilitated in Manchester at event organised by UK Participatory Research Hub, September 2016. Very popular, caused interest and requests for further cafes. Stimulated Sarah Banks to write a guide for facilitators. |
| Year(s) Of Engagement Activity | 2015 |
| URL | http://ukprn.weebly.com/resources.html |
| Description | Dilemmas Café (Durham, June 2016) |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | 3. Dilemmas Café: Using Dialogue to Explore Ethical Challenges in Community-based Participatory Research, Durham University, Tuesday 23rd June 2015, 17.30-20.00 a) What happened - a community partner, a postgraduate researcher and an academic each presented a real life ethical dilemma arising in participatory research. The audience participated in world café style dialogue on each dilemma around tables, feeding back at the end. It was facilitated by Sarah Banks (Durham University) and Sue Shaw (community partner). b) Participants: 23 people attended, mainly university staff and postgraduate students, with 8 participants from community organisations. • Summary of any feedback received - here is a summary of what people found most useful about the event: live examples of ethical dilemmas; being able to share with others honestly about key issues in research that are seldom talked about; bringing different perspectives together and preparing for the unexpected; stimulating thinking about the research process and ensuring no harm comes to the people involved in research. c) Any learning/reflections - this model works well and can be used in teaching and learning about ethical issues in all research (or indeed ethics in any setting). d) Any follow-up activities - the next meeting of the UK Participatory Health Network will include a dilemmas café, as participants found the model very useful and stimulating. |
| Year(s) Of Engagement Activity | 2015 |
| URL | https://www.dur.ac.uk/beacon/socialjustice/ccfestival2015/ |
| Description | Ethics in Participatory Research (Durham, November 2015) |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | A workshop on ethical issues in participatory research, introducing the ethics guide and associated materials, using some of the cases. Aimed at community-university partnership research. |
| Year(s) Of Engagement Activity | 2015 |
| URL | https://www.dur.ac.uk/beacon/socialjustice/events/pastandrecentevents/2015/ |
| Description | Participatory Ethics through Participatory Theatre (Durham, June 2015) |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | 2. Participatory Ethics through Participatory Theatre, Durham University, Monday 22nd June 2015, 12.30-16.00 a) What happened - an intensive small group workshop introducing participants to Forum Theatre as a means of reflecting on ethics in participatory research, facilitated by Frances Rifkin (Utopia Arts) and Sarah Banks (Durham University). b) Participants: 11 people attended, mainly university staff and postgraduate students, with 2 participants from community organisations. c) Summary of any feedback received - participants found it useful to learn about the theory base of forum theatre; the experience of forum theatre as a participant; the danger of using theatre without understanding the process and possibilities. d) Any learning/reflections - half a day is a good introduction, but people were keen for more depth. e) Any follow-up activities - interest in further workshops on participatory theatre. |
| Year(s) Of Engagement Activity | 2015 |
| URL | https://www.dur.ac.uk/beacon/socialjustice/ccfestival2015/ |
| Description | Podcasts relating to ethics in CBPR case examples |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Public/other audiences |
| Results and Impact | Short audio recordings of a range of community partners and academics commenting on written case examples of ethical challenges in CBPR projects Interest generated linked to case studies |
| Year(s) Of Engagement Activity | 2013 |
| URL | http://www.publicengagement.ac.uk/work-with-us/current-projects/ethics-cbpr |