Mother’s Coping of Children Suffering from Phenylketonuria

Abstract

Phenylketonuria (PKU) is an inherited disorder in which the body lacks the enzyme needed to convert phenylalanine to tyrosine. It can damage the brain and nervous system if left untreated. Aim: this study aims to assess the mother‘s coping of children suffering from PKU. Study Design: A descriptive design was utilized in this study. Setting: the study was conducted in genetic clinic affiliated to pediatric hospital of Ain Shams University. Sample: A purposive sample composed of 125 children medically diagnosed with phenylketonuria and their mothers. Tools: 1st tool an interviewing questionnaire to assess Socio-demographic data of the study children and their mothers, Current health needs and problems of children, mother‘s knowledge about phenylketonuria and Mother‘s reported practices related to care of their children with PKU as diet management and medical management. 2 nd tool coping scale modified to assess mothers coping toward their children suffering from PKU. 3 rd tool The medical record to assess health status of children. Results: the study revealed that the studied children suffering from PKU were having the highest scores of coping patterns of emotional adjustment in coping pattern scale 55.2% of mothers had satisfactory total knowledge about PKU, 60.0% of the mothers had acceptable practices about PKU. Conclusion: the present study concluded that 68.0% of the mothers had good coping of children suffering from PKU. There is a statistically highly significant positive relation between knowledge and practice. There is a statistically highly significant positive relation between knowledge and coping pattern. Recommendation: the study recommended that the community health nurse should identify mothers coping toward their children suffering from phenylketonuria and improved services to work with government to improve services to families of children with special needs