Scandinavian Journal of Caring Sciences

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Diabetes and end of life: ethical and methodological issues in gathering evidence to guide care
Dunning, T., Duggan, N., Savage, S. and Martin, P.

The aim of this article was to determine and discuss key ethical, methodological and researcher-related issues when undertaking qualitative research within palliative care. Data were gathered in individual interviews with patients and their relatives. The researchers also wrote a reflexive researcher journal. They found that the methodological issues were recruiting participants and ensuring rigor, while the ethical issues included benefit and risk concerns, justice, autonomy, privacy, professional boundaries and informed consent. The researcher-related issues were managing participant distress and the researcher’s own emotional distress. The conclusion of the study is that involving patients in research at the end of life is complex because of vulnerability. The recommendation is that participants should be given all relevant information and be given an opportunity to decide for themselves whether they want to be involved in the research. This is in accordance with the ethical principles of autonomy and justice. It is important to have a high standard regarding research ethics, and this study points to important issues when conducting research with vulnerable subjects.

Åshild Slettebø, Editor-in-Chief
Lennart Fredriksson, Associate Editor