“Exactly What They Need…”: Ethnography in Informal Care Settings.

In my contribution, “culture” refers not to a different ethnic group or national context, but to the setting of informal caregiving and the challenges that came along with doing ethnography in such a context and with elderly informal caregivers. I will present and reflect insights from my own ethnographic experience in ten families in a rural area in Germany that I carried out over more than a year in a completed research project. The challenges of the project were multifaceted and not only expected due to the intimate character of caregiving in the homes of the people, but also largely connected with the given framework of the research funding agency (their political interest in the topic) as well as the expectations and claims of the participants (the caregivers) and other involved project partners (from other disciplines and professional care institutions). Generally, the most challenging part was building up a relationship and maintain it with the elderly informal caregivers who were often long-term caregivers for their sick spouse with dementia, Alzheimer’s or Parkinson’s disease for at least four, mainly ten years. Most of them were 24/7 caregivers, under a lot of timely, emotional and psychological stress. The misbalance between this situation and our claim to carry out ethnography in this setting created ethical issues that accompanied me up until now. Along with this goes the experience of death and dealing with it (which stimulated a revisit of the work of Glaser/Strauss 1967). That is also interrelated with the more methodological question of the status of involvement and applied social research. Last, but not least, I would like to share experiences in respect to the different involved researchers, their personalities, individual skills, but also aspects such as seniority principle that caused a lot of trouble in the beginning of our project.