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Haemophilia: how sentinel patients have developed a warning semiotics
Jean-Charles Verheye1, Ludovic Robin2, Cyril Crozet1
1Laboratoire Éducations et Pratiques de Santé (EA 3412), université-Paris 13, Sorbonne-Paris Cité, Bobigny, France.
Abstract:
Haemophilia: how sentinel patients have developed warning semiotics. The experience of the disease may help the patient to develop effective actions to manage every day, if it is accompanied by a personal reflection. Following a process that sometimes can be long, some people with hemophilia, called sentinel patients have developed a personal semiology of early and subclinical signs of hemarthrose, complementary to medical semiology. Learning such an approach can be made possible within therapeutic education workshops co-facilitated by patient/parent and caregiver resources. Facilitated by peer intervention, the expression of singular feelings of early signs, helps patients reflect on strategies adapted to their situation and conducive to faster adequate reaction towards their bleeding episodes, particularly through self-care actions. This collaborative work between patients and caregivers also brings benefits to professionals who, for some, consider differently the care they provide to people they meet in their healthcare activity.
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