Our partners at Durham University are hosting a full day event on Friday 16th November entitled ‘Extending Voice and Autonomy through Participatory Action Research: Ethical and Practical Issues.
The ideal of participatory action research is to address inequality by involving people experiencing marginalisation, whose voices are often silenced or unheard, in the process of knowledge making and problem solving about issues that affect their lives. Enabling the participation of people whose autonomy (capacity to make choices) is described as restricted is an everlasting challenge in participatory action research, and demands innovative responses. In this event, we will critically reflect on the potential and limitations of the concept of ‘restricted autonomy’ and explore the ethical and practical challenges in working with people whose legal, physical, social and financial capacities are extremely constrained, including people with disabilities, people with dementia, refugees and people with breathing difficulties. In the workshops, academic and service user/community facilitators will work with participants to consider how to design inclusive participatory action research, identifying barriers and solutions for ensuring equitable participation of all partners in inquiry groups.
The event is free, but BOOKING IS ESSENTIAL. Lunch included. Please book early as places are limited to 50. Please book using this link: https://www.eventbrite.co.uk/e/extending-voice-and-autonomy-through-participatory-action-research-ethical-and-practical-issues-tickets-49981705627
10.00 Registration and Coffee
10.30 Welcome from Centre for Social Justice and Community Action and the MSW programme (Durham University) and from Ethics and Social Welfare Journal by Sarah Banks, Andrew Russell, Roger Smith and Nicki Ward
10.40 Participatory action research as a force for social change by Sarah Banks and Sui-Ting Kong
11.00 Relational autonomy as a way past the zero sum debate over whether children have enough capacity to be participatory research actors (45 mins talk and 15mins Q&A) by Janice McLaughlin
12.00 Table discussions focusing on PAR and autonomy
12.40 Book launch: ‘Ethics in participatory research for health and social well-being: Cases and commentaries’ by Sarah Banks
We are delighted to announce the publication of Ethics in participatory research for health and social well-being: Cases and commentaries, edited by Sarah Banks and Mary Brydon-Miller (Abingdon, Routledge). This builds on the substantial body of work undertaken by the Centre for Social Justice and Community Action in recent years, providing a welcome resource for participatory researchers. The book introduces the key ethical issues in participatory research, drawing on ethical theory and relevant literature before presenting 7 substantive chapters, each on a different theme, such as power, ownership, confidentiality and boundaries. The chapters feature an introductory overview of the topic with reference to the literature, followed by four real-life case examples written by participatory researchers and short commentaries on each case. Drawn from around the world (from Denmark to Tanzania), the cases illustrate a range of ethical issues, outlining how they were handled and the reflections and feelings of the contributors.
Further details can be found on this website. 20% discount is available if you order via this website, please enter the code FLR40 at checkout: www.routledge.com/Ethics-in-Participatory-Research-for-Health-and-Social-Well-Being-Cases/Banks-Brydon-Miller/p/book/9781138093430
Discounted copies will also be on sale at the workshop.
12.50 Sign up for the workshops
14.00 Workshops (choose ONE workshop, more details overleaf)
- Workshop 1: Doing research with people; not ‘for’ or ‘about’ them – (Re)integrating inclusion and collaboration in Participatory (Action) Research – by Gaynor Williams, James Edwards and Fredrik Nyman
This workshop seeks to complicate the researcher/researched relationship through interactive group discussions. It provides space for emergent (re)thinking of approaches that value partnership and cooperation between all parties involved in research. Abma writes that “Health research is conducted to produce knowledge that may ultimately lead to better treatments for patients. Patients do not, however, have a large influence on research” (2006: 425). Meanwhile, patients often lack information about how research is conducted, and are rarely informed about research results that may have a direct impact on their health. Participatory (Action) Research, as defined by Kindon and colleagues, is a “collaborative process of research, education and action… explicitly oriented towards social transformation” (2007: 9). But what conditions actually make a partnership? Where does the line go between ‘participation’ and ‘collaboration’ and who gets to draw it? When does research cease to be ‘with people’, and instead simply becomes ‘for’ or ‘about’ them?
This workshop is co-led by members of Breathe Easy Darlington (BED); a local group that provides support and information for people living with chronic breathlessness, and for those who look after them. In this workshop, we will discuss examples where research has ceased to be ‘with’ BED—instead, turning to be ‘for’ or ‘about’ them. We will also illustrate the patient experience in displaying how things are made a ‘little tricky’ by being breathless.
- Workshop 2: ‘Mad People Interviewing Mad People’: the assumptions, challenges and opportunities of participatory research with mental health service users, carers and professionals – by Toby Brandon and Nicola Armstrong
This workshop will explore the experience; lesions learned and contested areas of conducting participatory research with mental health service users, carers and professionals. Drawing on research and evaluation project experience over the last 8 years, issues around perceived vulnerability, engagement, recruitment, communication, identity and the seeking of ethical approval will be discussed. Space will be provided to explore both practical and theoretical aspects of working alongside experts by experience in the mental health field. This will include reference to Mad Studies as a developing academic discipline and the challenges of engaging authentically with people who have often been excluded in from the pursuit of a knowledge democracy.
- Workshop 3: Engaging, supporting and working with people through music – by Sam Slatcher and Sue Shaw
In this workshop, we will give a brief description of how we engage, support and work with people with dementia living in a nursing home and a hospice through music, and also with refugees and asylum seekers with music of their own cultures. We will cover the processes of gaining permission, the ethics involved and the range of ideas and situations in which music can be used and the potential benefits. Then we will open the workshop up for discussion, questions and how participants might develop the ideas in their own situations.
- Workshop 4: Making Participation Real – by Danielle Rudd, Helen Charnley, Nicki Ward, Se Kwang Hwang and Stewart Chappell
This workshop will focus on the tensions that arise in the practice of participatory action research that limit the participation of individuals or groups who have been conceptualised as having restricted autonomy. It will draw on, though not be limited to, experiences of participatory action research involving learning disabled and autistic people. Those taking part in the workshop will be given an opportunity to work with the PATH planning model, which is offered as an example of an inclusive and collaborative way of developing participatory action research. PATH is a tool which helps individuals and teams with different needs and ideas to set goals and develop a plan which will help them to meet those goals.
Through these activities we will address the following questions:
· Are people with a learning disability and/or autism actively involved in research? Why/not?
· Is it easy for researchers to ask people with a learning disability and/or autism for their opinions about research? Why/not?
· Is it easy for people with a learning disability and/or autism to ask researchers to look into particular things? Why/not?
· Who has the most power?
· Who makes the decisions?
From this exercise we aim to develop a better understanding of:
· What has been learned, and what can be learned from people considered as having restricted autonomy, about the ethical conduct of Participatory Action Research?
· What practical steps can be taken to address power imbalances within the PAR process?
15.30 Tea and sharing key action points from workshops
16.15 Collective evaluation