Assessment of Mothers Care toward their Children having Phenylketonuria

Abstract

Phenylketoneuria is an autosomal recessive disorder and 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 Hospital. Data collection tool: 1 st tool: Interviewing Questionnaire Format to assess socio-demographic data of the study children and their mothers, medical history of children with PKU, mothers' knowledge about PKU, assessment of children' health needs and problems, 2 nd 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. 3 rd tool: Psychometric Assessment for mothers as Coping Pattern Scale, Beck Depression Inventory and State-Trait Anxiety Inventory. Results: This study revealed that above half of studied children's were females, it ranged from birth to more than 9 years with a mean age of 4.45 ± 2.07 years, the mean age of studied mothers was (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.