Extending Voice and Autonomy through Participatory Action Research: Ethical and Practical Issues

ABSTRACT

Participatory action research always operates in the tension of extending the voice of people who are marginalised and unheard in the society. A workshop, ‘Extending Voice and Autonomy through Participatory Action Research: Ethical and Practical Issues’, was therefore organised to look at the issues arising from this tension. The workshop aimed to examine critically the potential of participatory action research to enable people whose voices are seldom heard and choices are often restricted to be seen, heard and to influence practice and policy relevant to their lives. The paper first outlines the rationale for the workshop and then demonstrates how ‘co-impact’ of participatory action research projects can be achieved through having conversations and reflecting on the ideas of ‘voice and autonomy’, ‘knowledge’, ‘vulnerability’, ‘user involvement and participation’. Through reflecting on the experience of preparing for and delivering the workshop, we seek ways to transform the relationship(s) between service users/community partners and academic and service professionals in the hope of generating practical knowledge ethically.

KEYWORDS:

• Participatory action research
• autonomy
• ethics

Disclosure statement

No potential conflict of interest was reported by the author(s).

Notes on contributors

Sui Ting Kong is Assistant Professor in the Department of Sociology and Deputy Director of the Centre for Social Justice and Community Action at Durham University (UK). Her research interest in developing participatory qualitative methodologies/methods has been a strong feature in her academic work, including her studies on domestic violence, end-of-life care and democratic social movements in Hong Kong.

Sarah Banks is Professor in the Department of Sociology and Co-Director of the Centre for Social Justice and Community Action at Durham University, UK. She has an interest in participatory action research, community development and ethics in social, community and youth work.

Toby Brandon is a Reader in Mental Health and Disability in the Department of Social Work, Education and Social Wellbeing at Northumbria University and he is a visiting lecturer in Mental Health at the University of Malta. His research is underpinned by co-production, grounded in participatory research primarily with mental health experts by experience. He teaches Mad Studies and Research Methods and has published on advocacy, mental health recovery and stigma. He works closely with Cumbria, Northumberland and Tyne and Wear NHS Foundation Trust on evaluations and service development projects. He is also an active member of the UK Participatory Research Network and trustee of the North East Mental Health charity Chilli Studio.

Stewart Chappell is a project worker with Skills for People, a self-advocacy organisation supporting disabled people and their families to improve their lives and to influence society to improve the world for disabled people.

Helen Charnley works in the Sociology Department, Durham University, UK. She supports the involvement of service users in social work learning and teaching, and promotes the use of participatory action research with children and adults who use social work services.

Se Kwang Hwang is a senior lecturer in Department of Social Work, Education & Community Wellbeing, Northumbria University, UK. He has worked a wide range of disability organisations in third sectors and has an interest in various disability issues, especially autism, and participatory research with socially marginalised groups.

Danielle Rudd is a PhD student at Northumbria University researching the impact of cuts to services for parents with a learning disability and/or autism. She facilitates a group to encourage a positive sense of autistic identity at Skills for People.

Sue Shaw worked as a community development facilitator and trainer specialising in rural issues, and is Chair of the Centre for Social Justice and Community Action.

Sam Slatcher is a community music practitioner and the director of Citizen Songwriters, a social enterprise that encourages social harmony through songwriting. He has a PhD in Human Geography from Durham University on encounters in creative community engagement projects in West Yorkshire.

Nicki Ward is a lecturer in Social Work at the University of Birmingham. Nicki's has worked alongside people with learning disabilities for over 40 years spanning both her practice and academic careers. Her research and teaching interests include inclusive practice, ethical and value based practice, particularly the Feminist Ethic of Care as well as an interest in identity and intersectionality - particularly relating to issues of gender and sexual diversity.

ORCID

Sui Ting Kong http://orcid.org/0000-0003-1037-9774

Sarah Banks http://orcid.org/0000-0002-2529-6413

Helen Charnley http://orcid.org/0000-0002-8230-7043

Se Kwang Hwang http://orcid.org/0000-0002-9843-0724

Notes

1 In UK’s context, the term ‘service users’ is adopted by social policy and social work research to reflect the lack of participation of users in service design and delivery (Croft and Beresford 1996). This terminology is criticised for being consumerist (Carey 2009) and excluding people with relevant experiences but who do not want to use services. Expert by experience (EBE) is in part an attempt to include anyone who has experienced, for example mental health distress, irrespective of their use of services, and those who support this group (family and friends). However, some people object to the use of ‘expert’ and the universality of ‘experience’. ‘Community partner’ is also an attempt to ‘move away from the “outside expert” and tokenistic involvement’ to place importance on negotiation situated in specific socio/cultural/political contexts where the collaboration takes place (Durham Community Research Team 2011, 7). However, what constitutes a community is always debatable.