Conducting research with the terminally ill: challenges and considerations

Abstract

This article explores some of the pertinent issues that arose while conducting a research study involving people with a terminal illness, their lay carers and bereaved carers. Ethical considerations are of paramount importance when carrying out research with vulnerable groups; and issues such as approaching potential participants without adding to their distress and anxiety, and obtaining consent without coercion need careful consideration. Adhering to a stringent research design, while preferable for the research agenda, is not always compatible with the ethical concepts of beneficence and non-maleficence. The potential benefits to vulnerable persons of being involved in such work may not be immediately obvious although altruism, in wanting to help others in a similar situation in the future, and the therapeutic effect of telling one’s story may have indirect benefit for some. However, it may not be possible for the researcher to ever fully ascertain the actual benefit and harm incurred in carrying out such work.