The distinctive features of congenital bleeding disorders (of which the most common is haemophilia) are the unpredictability of bleeding events, their duration, and their severity. This generates a persistent state of uncertainty in patients and care-providers with regard to how quickly and in what way treatment is to be administered. The overcoming of this condition is now possible through the infusion of the missing clotting factor. Infusion can be implemented in two ways: prophylaxis and on-demand therapy. This study is aimed at an indepth understanding of the conditions that facilitate or impede adherence to different forms of treatment, including prophylaxis and on-demand therapy, in families with children with haemophilia. Parents of 11 families with children with haemophilia, living in Bologna and province, adhering to different treatment (prophylaxis or on-demand therapy) were interviewed. The results show that the two kinds of therapies are linked to different representations of the disease and to different type of family functioning. Prophylaxis is confirmed as treatment that more is accompanied by a normalization lifestyle both for the child and the whole family.
Keywords: Haemophilia, prophylaxis, on-demand therapy, disease representations, family functioning
Sabrina Bertocchi, Francesca Emiliani, Silvia Potì, Laura Palareti, Different regimens in the treatment of children with congenital haemorrhagic disease: processes of choice and impact on psychosocial well-being of the patient and his family in "PSICOLOGIA DELLA SALUTE" 3/2010, pp. 65-90, DOI:10.3280/PDS2010-003005