Conducting research into end of life care

What to consider when undertaking research with vulnerable participants

When researchers plan projects they are often filled with enthusiasm about the topic area and the new understanding they will gain from the data. Sometimes, this leads them to overlook the effect on participants of being asked to engage in data collection, especially when this is burdensome.

Definitions of what is burdensome may differ among participant groups. For example, patients attending weekly dialysis may be expected to have their weight and height measured by a nurse each time they visit. For frail, older people, however, attending a hospital clinic every week may be burdensome – they would have to negotiate transport and take time to attend the clinic for the sole purpose of data collection.

It is therefore important for researchers to consider how participation in research can be burdensome to some