Doing Research on Palliative Care in Prisons: Ethical and Methodological Considerations

• In Event: PWG - Aging and end-of-life in prisons: Needs, ethics, and Implications

Abstract

With a growing prison population, an aging detainee demographic, and longer sentences, the need for palliative care in detention is expected to rise. However, the challenges and experiences associated with providing such care remain largely undocumented, creating a need for further research. This highlights the importance of exploring the experiences and needs of various actors involved in this, including detained individuals requiring palliative care, their families, caregivers, and prison officers.
However, examining the experiences of individuals receiving palliative care raises ethical concerns, particularly regarding informed consent, decision-making capacity, role ambiguity of the researcher, and the benefits/risks of the study for research subjects. Moreover, doing research in prisons entails unique risks, including challenges related to access, confidentiality, and trust-building. A history of exploitation and abuse has led to strong protections for incarcerated individuals to prevent research misconduct. However, it has been argued that an excessive emphasis on protecting imprisoned persons as a vulnerable population may limit participation and hinder the potential benefits of research.
This presentation explores the ethical challenges of researching palliative care in prisons and their impact on research methodology, examining how these issues shape the design, ethics and execution of this study.

Authors

• Lennert De Boe, Vrije Universiteit Brussel

• An-Sofie Vanhouche, Vrije Universiteit Brussel

• Kristel Beyens, Vrije Universiteit Brussel

• Katrien Vanthomme, Ugent