الفهرس 
Overview about the PhenylketoneuriaOnly 14 pages are availabe for public view
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Abstract
Phenylketoneuria is a common inborn error of amino acid metabolism and can cause irreversible brain damage if untreated. Aim: This study aimed to assess mothers care for children having Phenylketoneuria through assessing the mothers’ knowledge, self-reported practice and coping patterns toward their children with PKU. Design: A descriptive study. Sampling: A purposive sample comprised of 94 mothers accompying children with PKU. Setting: This study was conducted at Specialized Genetic Outpatient Clinic, Children’s Hospital affiliated to Ain Shams University Hospitals. Data collection tool: 1st tool: an Interviewing Questionnaire format containing 6 parts to assess socio- demographic data of the studied mothers and their children, medical history of children with PKU, mothers knowledge about PKU, assessment of children health needs and management of problems, and assessment of the mothers knowledge about their role in caring with children with PKU 2nd tool: Mothers Reported Practice Format related to care of their children with PKU, as diet management and follow up for growth and development, as weight, height. 3rd tool: Psychometric assessment for mothers, as Coping Pattern Scale, Beck Depression Inventory and State-Trait Anxiety Inventory. Results: This study revealed that studied children’s age ranged from birth to more than 9 years with a mean age of 4.45 ± 2.07 years with mean (32.26 ± 4.2 years), Conclusion: about more than half of mothers had poor knowledge about PKU. As well more than one tenth of the mothers had poor total reported practice. There is a significant correlation between mothers’ knowledge, practice and their caring roles, anxiety and depression. Recommendation: Continuous health teaching to children and their caregivers regarding PKU.
Keywords: Phenylketoneuria, Health Needs, Problems, Dietary Management, Psychometric Assessment