Data from: Exploring the perceptions of physicians, caregivers and families towards artificial nutrition and hydration for people in permanent vegetative state: how can a photo-elicitation method help?

The question of withdrawing artificial nutrition and hydration from people
in a permanent vegetative state sparks considerable ethical and legal
debate. Therefore, understanding the elements that influence such a
decision is crucial. However, exploring perceptions of artificial
nutrition and hydration is methodologically challenging for several
reasons. First, because of the emotional state of the professionals and
family members, who are facing an extremely distressing situation; second,
because this question mirrors representations linked to a deep-rooted fear
of dying of hunger and thirst; and third, because of taboos surrounding
death. We sought to determine the best method to explore such complex
situations in depth. This article aims to assess the relevance of the
photo-elicitation interview method to analyze the perceptions and
attitudes of health professionals and families of people in a permanent
vegetative state regarding artificial nutrition and hydration. The
photo-elicitation interview method consists in inserting one or more
photographs into a research interview. An original set of 60 photos was
built using Google Images and participants were asked to choose photos (10
maximum) and talk about them. The situations of 32 patients were explored
in 23 dedicated centers for people in permanent vegetative state across
France. In total, 138 interviews were conducted with health professionals
and family members. We found that the photo-elicitation interview method
1) was well accepted by the participants and allowed them to express their
emotions constructively, 2) fostered narration, reflexivity and
introspection, 3) offered a sufficient "unusual angle" to allow
participants to go beyond stereotypes and habits of thinking, and 4) can
be replicated in other research areas. The use of visual methods currently
constitutes an expanding area of research and this study stressed that
this is of special interest to enhance research among populations facing
end-of-life and ethical issues.