Relatives Information Days
The Irish Haemophilia Society organises “Relatives Days” primarily targeted at the grandparents of children with haemophilia and also the siblings of the father of the child with haemophilia. For some 30% of parents, the fact of having a child with haemophilia is a complete shock as haemophilia results from a spontaneous mutation in the X chromosome. In 70% of cases the mother is a carrier and in the majority of these cases, there will have been a family history of haemophilia so the diagnosis may not be completely unexpected. In all cases, the condition is new to the father. It is hoped by organising these information days that the personal interaction will assist new families and fathers in coping. There is a remaining gap between the reality of modern haemophilia care and the perception of haemophilia which is most evident in the extended families of the fathers. Relatives Information Days allow the siblings and parents of the father to learn about haemophilia, to absorb real information in a manner designed to facilitate retention, and to look at the evidence of seeing a group of happy, well adjusted and healthy children who happen to have haemophilia but who, thanks to modern treatment, are not necessarily defined by their haemophilia.
The concept of a relatives day was first held in 2009. A total of 13 relatives attended. Lectures were delivered on haemophilia in children by the haemophilia care team from Cork University Hospital and a lecture was presented on the support and services offered by the IHS. There was a surprising degree of inaccuracy in the views of several of the relatives on the topic of mild and moderate haemophilia. Several relatives clearly projected the clinical consequences and expectations appropriate to a child with severe haemophilia onto their fears and expectations for their relative with mild or moderate haemophilia. This misperception was clearly having a deleterious effect on family dynamics and support systems and the meeting afforded us an excellent opportunity to correct this. If demand exists, we will hold these information days on a regular basis.