Unintended, Percolated Work: Overlooked Opportunities for Collaboration Between Informal Caregivers and Healthcare Professionals During the End-Of-Life Care Process

Bereavement often places a psychological burden on families and should be addressed appropriately. Although end-of-life care is a collaborative activity with interaction between family caregivers and medical professionals, further research is needed to explore family caregivers’ support needs as collaborative workers and the challenges they face. This study examined the collaboration during the end-of-life process between family caregivers and medical professionals to understand the cooperative activities and factors surrounding them based on unrealized or regrettable experiences during end-of-life care. Semi-structured interviews with bereaved family caregivers who provided end-of-life care and medical professionals who provided support revealed that family caregivers’ aspirations and medical professionals’ support for family caregivers crossed paths, steering end-of-life caregiving in an unintended direction. Characteristic work carried out by each actor in this situation is defined as "unintended, percolated work" and considered an overlooked collaboration opportunity, proposing support suggestions for handling family caregivers’ original intentions and needs.