Participatory Research Into Inclusive Practice: Improving Services for People With Long Term Neurological Conditions


  • Tina Cook Liverpool Hope University
  • Helen Atkin Northumbria University
  • Jane Wilcockson Northumbria University



inclusion, participatory research, service user involvement, neuro-rehabilitation, service development


People with long-term conditions are intensive users of health services as well as being long term users of social care and community services. In the UK, the Department of Health has suggested that the development of a more inclusive approach to services could furnish benefits to people with long-term conditions and financial savings for service providers.

Researchers with a varied set of expertise and experience (users of neuro-rehabilitation services, staff working in services, people working with third sector agencies and university academics) adopted a participatory research approach to work together to explore what inclusion might look and feel like for people who are long term users of health services. The element of critique and mutual challenge, developed within the research process, disturbed current presentations of inclusion and inclusive practice. It revealed that the more usually expected components of inclusion (trust, respect and shared responsibility) whilst necessary for inclusive practice, are not necessarily sufficient. Inclusion is revealed as a complex and challenging process that requires the active construction of a critical communicative space for dialectical and democratic learning for service development.


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Author Biographies

Tina Cook, Liverpool Hope University

Tina COOK worked with multidisciplinary teams in health, education and social work for 20 years before joining academia. She is now a reader in inclusive methodologies at Northumbria University and visiting professorial fellow at Liverpool Hope University. At the core of her work is a focus on inclusive practice. Using participatory research, particularly collaborative action research, she seeks ways of facilitating the inclusion, as research partners, of those who might generally be excluded from research that concerns their own lives. She has published on both methodological issues and issues related to research in practice. She is an Executive Committee member of the International Collaboration on Participatory Health Research, founder of the UK Participatory Research Network and an Editor of the International Journal Educational Action Research.

Helen Atkin, Northumbria University

Helen ATKIN worked in the UK health service for over 20 years as an occupational therapist and service user involvement facilitator prior to becoming a senior researcher at Northumbria University. Central to her work is a commitment to participatory and collaborative approaches to both research and practiced that lead to changes and improvements in healthcare. She is a co-facilitator of the UK participatory Research Network and PhD candidate.

Jane Wilcockson, Northumbria University

Jane WILCOCKSON worked in the UK health service for more than a decade prior to working as a research in the Department of Education at Newcastle University. It is there that her interest in how computer assisted qualitative data analysis software (CAQDAS) can support qualitative researchers in their work was initiated. Jane enjoys a varied research career using a wide range of methodologies both within and out with Northumbria University where she now works.




How to Cite

Cook, T., Atkin, H., & Wilcockson, J. (2017). Participatory Research Into Inclusive Practice: Improving Services for People With Long Term Neurological Conditions. Forum Qualitative Sozialforschung Forum: Qualitative Social Research, 19(1).



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