Grappling with the borders and intersections of academia, advocacy and activism

An article authored by the School’s Professor Jenny Kitzinger and Professor Celia Kitzinger (Cardiff University School of Law and Politics) and published in a Special Edition of Bioethics, is free to access for a limited time.

The article explores the links between Jenny and Celia’s roles as academics, advocates, and activists, with regard their research on treatment decisions for patients in vegetative and minimally conscious states.

They describe how their work evolved from personal experience through traditional social science research to public engagement activities and then to advocacy and activism.

The article reflects on the challenges they faced to navigate the relationship between research, advocacy, and activism, and the implications of these challenges for research ethics and methodology - and gives practical examples of how they worked with research participants, wrote up case studies and developed interventions into legal debates.

Finally, the article asks how practicing at the borders of academia, advocacy, and activism can inform research - helping to contextualize, sensitize, and engage theory with practice, leading to a more robust analysis of data and its implications, and helping to ensure a dialogue between research, theory, lived experience, front‐line practice, law, and public policy.

View the full article: Supporting families involved in court cases about life‐sustaining treatment: Working as academics, advocates and activists