Literature DB >> 30989675

Supporting families involved in court cases about life-sustaining treatment: Working as academics, advocates and activists.

Celia Kitzinger1, Jenny Kitzinger2.   

Abstract

This article explores the links between our roles as academics, advocates, and activists, focusing on our research on treatment decisions for patients in vegetative and minimally conscious states. We describe how our work evolved from personal experience through traditional social science research to public engagement activities and then to advocacy and activism. We reflect on the challenges we faced in navigating the relationship between our research, advocacy, and activism, and the implications of these challenges for our research ethics and methodology-giving practical examples of how we worked with research participants, wrote up case studies and developed interventions into legal debates. We also address the implications of the impact agenda-imposed by the British Research Excellence Framework- for our actions as scholar-activists. Finally, we ask 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.
© 2019 John Wiley & Sons Ltd.

Entities:  

Keywords:  disability; ethnography; impact; insider research; interviews; lived experience; methodology; prolonged disorders of consciousness; scholar-activism; socio-legal; theory; vegetative

Mesh:

Year:  2019        PMID: 30989675     DOI: 10.1111/bioe.12583

Source DB:  PubMed          Journal:  Bioethics        ISSN: 0269-9702            Impact factor:   1.898


  2 in total

1.  Inter-physician variability in strategies linked to treatment limitations after severe traumatic brain injury; proactivity or wait-and-see.

Authors:  Annette Robertsen; Eirik Helseth; Reidun Førde
Journal:  BMC Med Ethics       Date:  2021-04-13       Impact factor: 2.652

2.  Intensive neurorehabilitation for patients with prolonged disorders of consciousness: protocol of a mixed-methods study focusing on outcomes, ethics and impact.

Authors:  Manju Sharma-Virk; Willemijn S van Erp; Jan C M Lavrijsen; Raymond T C M Koopmans
Journal:  BMC Neurol       Date:  2021-03-22       Impact factor: 2.474

  2 in total

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