Mother’s coping of Children Suffering from Phenylketonuria

Abstract

Phenylketonuria (PKU) is a rare genetic condition that is present from birth (congenital). In PKU, the body is unable to break down phenylalanine, which then builds up in the blood and in the brain. Left untreated, high phenylalanine levels disrupt the normal development of a child’s brain and can cause severe learning difficulties. A person with the most severe learning difficulties has mental abilities similar to those in a one or two year old infant and would require 24 hour care for the whole of their life.Treatment consists of a special diet that contains very little phenylalanine. This diet must be used throughout the patient's life. Untreated newborns develop disease symptoms at age three to five months. At first they appear to be less attentive and may have eating problems. By one year of age, they are mentally retarded. Family coping is defined as a process of family adaptation that involves coping strategies within the family and community. The parents of child with a chronic condition have to cope with the burden of daily care related to the illness. Babies who get on this special diet soon after they are born develop normally. Many have no symptoms of PKU. It is important that they stay on the diet for the rest of their lives. Development of effective coping patterns allows mothers of PKU children to release stress and improve family functioning. The aim of this study is to assess the mother coping of children suffering from PKU through determining the mother’s coping pattern to The study will conduct at genetic clinic affiliated to pediatric hospital of Ain Shams University ward their children with PKU. The sample of the study involved 125 children suffering from PKU and their mothers. From both sex, aged 2-12 years. Data obtained through an interview with the PKU children and their accompanying mother though using the following tools: The first tool:- A pre-designed questionnaire was developed by investigator and it was written in simple Arabic language, it included the following:- - Socio-demographic data of the PKU children Include gender, age, level of education and child rank. - Socio-demographic data of the mothers and fathers include age, level of education and occupation. - Data regarding the child’s medical history. Data regarding assessing mother’s knowledge about PKU, causes, signs and symptoms, risk factor, complication, and management. - Data regarding children health needs and problems related to PKU by mother’s role toward the needs