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Pregnancy and infant loss support: a new, feminist, American, patient movement?
1Department of Science and Technology Studies, Rensselaer Polytechnic Institute, Troy, New York 12180, USA. laynel@rpi.edu
Using as examples three of the earliest pregnancy and infant loss organizations and multiple recent initiatives, I argue this is a unique patient movement, in part due to the particularities of pregnant patienthood. Although during the first 20 years of this distinctively US movement, pregnancy and infant loss support was hospital-based, there was remarkably little attention to the "medical" dimensions of these losses, e.g. etiology, diagnosis, prevention, and treatment. The thrust was instead on changing ideas and feelings. It is only since the turn of the century that bereaved parents have started to forge collaborations with physicians to work toward prevention. During the first phase (mid-1970s to mid-1990s), it was a women's movement, though it did not present itself as such, and although it was indebted to the feminist movement and included some feminist initiatives, the movement was dominated by a traditionally feminine ethos and included pro-life elements. During the second phase, as physicians and researchers have become more involved, leadership has become somewhat less female-centric while at the same time, more initiatives are explicitly feminist.
Using as examples three of the earliest pregnancy and infant loss organizations and multiple recent initiatives, I argue this is a unique patient movement, in part due to the particularities of pregnant patienthood. Although during the first 20 years of this distinctively US movement, pregnancy and infant loss support was hospital-based, there was remarkably little attention to the "medical" dimensions of these losses, e.g. etiology, diagnosis, prevention, and treatment. The thrust was instead on changing ideas and feelings. It is only since the turn of the century that bereaved parents have started to forge collaborations with physicians to work toward prevention. During the first phase (mid-1970s to mid-1990s), it was a women's movement, though it did not present itself as such, and although it was indebted to the feminist movement and included some feminist initiatives, the movement was dominated by a traditionally feminine ethos and included pro-life elements. During the second phase, as physicians and researchers have become more involved, leadership has become somewhat less female-centric while at the same time, more initiatives are explicitly feminist.
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