Supporting families involved in court cases about life-sustaining treatment: Working as academics, advocates and activists
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 t...
| Auteurs: | ; |
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| Type de support: | Électronique Article |
| Langue: | Anglais |
| Vérifier la disponibilité: | HBZ Gateway |
| Interlibrary Loan: | Interlibrary Loan for the Fachinformationsdienste (Specialized Information Services in Germany) |
| Publié: |
[2019]
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| Dans: |
Bioethics
Année: 2019, Volume: 33, Numéro: 8, Pages: 896-907 |
| RelBib Classification: | NCH Éthique médicale ZC Politique en général |
| Sujets non-standardisés: | B
Disability
B Impact B scholar-activism B Ethnography B Methodology B Theory B insider research B Lived experience B vegetative B prolonged disorders of consciousness B socio-legal B Interviews |
| Accès en ligne: |
Accès probablement gratuit Volltext (Maison d'édition) Volltext (doi) |
| Résumé: | 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. |
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| ISSN: | 1467-8519 |
| Contient: | Enthalten in: Bioethics
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| Persistent identifiers: | DOI: 10.1111/bioe.12583 |
