Living, Caring, Learning – The treatment centre as family for a woman with severe haemophilia

Abstract

Abstract A nurse at Israel’s National Hemophilia Center for over 35 years, Dalia reflects on lifelong relationships with patients and the ‘family approach’ to care in the context of her experience of caring for a woman with severe haemophilia A. Having cared for the patient since she was a young child, Dalia describes the difficulties she has faced and the importance of ongoing conversations about her life in shaping her care, including risks around pregnancy and having a child. The patient went on to have a son by caesarean section, covered by factor VIII and tranexamic acid; her son was diagnosed with severe haemophilia A at birth and Dalia now sees them both in clinic. The patient also contributes her view on the importance of the close therapeutic relationships she has with Dalia. While acknowledging the importance of setting boundaries, Dalia reflects on the role of the haemophilia centre as an extension of the patient’s family and the nurse as a ‘mother’ figure. She feels the centre’s family approach is reflected not only in the care team’s knowledge of their patients but also through close and effective working relationships between staff, built on experience sharing, discussion and mutual support. Dalia believes it is this combination that has made her centre so successful in its involvement in clinical trials.