2 Mesogeion Avenue , 115 27 Athens, Building C, 2nd Floor.

Tel: 0030 210-7702861

Fax: 0030 210-7702861

0030 210-7790360

info@esne.gr

**Introduction:** The child who is suffering from haemophilia is submitted to restrictions and suffering negative feelings that influence the quality of his life. The genetic and psychosocial consulting, as well as getting adequate information concerning the illness, is of vital importance. Purpose of the presence research was to investigate the parental perception of the quality of their children's life that are suffering from haemophilia. Material and Μethod: The sample of the research consists of 50 parents who have children suffering from haemophilia A and B at the age of 4–16 years, who are treated from the Unit of Hemorrhagic Disorders and Center of Hemophilic Children of Children’ s Hospital “Agia Sofia”. The statistical data was collected after the fulfillment of the “Haemo Quol Questionnaire” scale, from the parents. For the statistical analysis of the data was used the statistic program SPSS version 22 and was applied the non parametric test Mann-Whitney Test. The level of materiality is p<0,05. **Results:** From the 50 parents 75.5% were mothers. The children’s age at 16.0% was 4–7 years old, 8–12 years old at 36.0% and 13–16 years old at 48.0%. 32.0% of the sample are reported that their children had one episode of bleeding, 6.0% had two bleeding episodes and 6.0% more than two. The parents believe that the children have a good quality of life with total score below fifty in all the subscales. “At the coagulation factor” scale the parents who have children at the age of 8–12 years old gave more negative score. At the question “how is feeling the child”, the negative score was from parents of children at the age group of 4–7 years, p=0.001. The same team gave more negative score at the question “how he evaluating himself”, p<0.001 and at the parameter “hemophilia and family”, p<0.001. At the parameter “Haemo and sports” the parents of age group 13–16 gave more negative score, p<0.001. The parameter “therapy” was more negative evaluated by the parents of children 4–7 years old, p<0.001. Generally, at the total score of the scale, negative scores gave the parents of children 4–7 years old, p=0.014, while at the question “what are you thinking about the future”, the separated parents gave more negative score, p=0.044. At the parameter “hemophilia and the support that you believe that the child receives”, the more negative score gave the parents who have university education, p=0.018. The parameter “treatment” was more negative scored from persons that were informed well enough, p=0.051. **Conclusions:** Generally the parents with children with hemophilia declared that their children have a good quality of life. On the other hand, varied social and demographic factors have a negative influence at the quality of those children’s life.

Category: | Volume 57, N 3 |

Hits: | 572 Hits |

Created Date: |
15-09-2018 |

Authors: | Theologia Dimza , Eftychia Evangelidou , Dimitrios Koukoularis , Michail Mantzanas , Spyridoula Stefanidou , Ioannis Koutelekos , Eleni Kyritsi |