Mood states and future expectations of parents of the children with phenylketonuria

Mood States and Future Expectations of Parents of the Children with Phenylketonuria Hereditary metabolic diseases are rarely seen, mostly inherited autosomal recessive pattern. Phenylketonuria is firstly described newborn metabolic disease. Patients with this disease show some medical problems like severe mental retardation, behavior disorders, eczema and epilepsy unless treated properly. Chronic diseases like phenylketonuria are not only affecting the children badly but also their families in both emotional and economical aspects. There are a lot of researches on measuring hopelessness level of families who have a member with chronic disease. It cannot be found out a research measuring fluctuations of hopelessness and mood in phenylketonuria disease. Main aims of this research are to supply this deficiency, to measure fluctuations of mood and hopelessness level in caregivers by using EE (Expressed Emotion) scale and Beck Hopelessness scale and make appropriate suggestions, to prevent emerging of permanent psychiatric diseases, thus to avoid ability loss. Sample group of the research is chosen from the parents of the children with and without PKU who consult Diyarbakır Children's Hospital between 15.07.2013-15.10.2013. 80 of them were from PKU patients parent and 77 of them were parents of children without PKU. After taking their informed consent, socio-demographic data form, EE scale, Beck Hopelessness scale were applied to this sample group. In this study hopelessness and EE scale points of the parents with phenylketonuria patients are statistically significantly higher than parents in the control group(p<0.05Having more than one child with PKU in one family, older age of the child, older age of the parents are important variables of the study that result hopelessness and EE scale points statistically higher. As a result it can be said that by the time passing parents of patients who have chronic diseases are losing their hope, expressing their emotions more and this situation is affecting their mood in bad way. It is important to provide psychological support to parents of the children with chronic diseases in order to normal childhood and gaining normal individual to society. Making more and comprehensive researches will be beneficial to make better solution suggestions.