Guidance for Ethical Research
These guidelines respond to a problem the network has been naming for years: carer organisations are routinely recruited into research projects as an afterthought, brought in too late to shape the inquiries, yet expected to be the actors responding to the questions the researchers are seeking to explore. This effectively results in their involvement being too late to lend credibility to funding applications, with expectations for them to contribute without adequate compensation or recognition. The new guidance makes clear that this approach is not a partnership but rather an exploitation of goodwill. This is particularly relevant since around half of Eurocarers members are researchers and universities and the other half are composed of carer-led organisations.
Description
Published in June 2026
