Nursing Intervention Program for Family Caregivers Having Children with Phenylketonuria
fouad, ferial; Dr.Hemat Abd Elmoneem2;
Abstract
Abstract: Phenylketonuria is a genetic disorder in which individuals are unable to metabolize Phenylalanine to tyrosine, which may lead to mental retardation. The study aimed to evaluate the effect of a nursing intervention program on knowledge and practices of family caregivers having children with phenylketonuria. A quasi-experimental design was used. The study was carried out at two settings, the Pediatric Genetics Clinic in Ain Shams University Children’s Hospital and the Child Clinic of Phenylketonuria Metabolic Disorder in the Pediatric Hospital Campus of Cairo University. A purposive sample included 153 children with phenylketonuria and their family caregivers. For data collection, two tools were used: 1) A structured interview questionnaire included six parts to assess demographic data for children and family caregivers' knowledge and practices regarding the Phenylketonuria. 2) A child's medical record. The results revealed that 55.6 % of the studied children were males, while 52.9% of them their age was ranged from 2- < 6 years, and 13.7% of them are enrolled in special needs schools. Most of family caregivers were females with a mean age of 35.3±3.2. There was improvement in children's weight and phenylalanine level post program with statistically significant differences. Also, there were highly statistically significant differences in the total satisfactory knowledge for family caregivers and their practices post program implementation (X² = 28.564 at P <0.001). This study proved that the nursing intervention program significantly improved the family caregivers' knowledge and practices related to the care of their children with phenylketonuria. The study recommended the publication and dissemination of the nursing intervention program in all maternal and child health care centers for families having children with phenylketonuria to raise their awareness about the disease management to prevent its complications.
Other data
| Title | Nursing Intervention Program for Family Caregivers Having Children with Phenylketonuria | Authors | fouad, ferial ; Dr.Hemat Abd Elmoneem2 | Keywords | Phenylketonuria Children - Family Caregivers - Community Health Nurse Role - Nursing Intervention Program. | Issue Date | Nov-2016 | Publisher | Dr Ferial Fouad Melika, Dr.Hemat Abd Elmoneem2 | Source | www.iosrjournals.org | Journal | IOSR Journal of Nursing and Health Science (IOSR-JNHS) | Series/Report no. | ;Volume 5, Issue 6 Ver. I (Nov. - Dec. 2016), PP 154-167 | Description | In Egypt the incidence of PKU is unknown, but all cases about 8000 cases follow up in genetic clinics in Egypt. The prevalence in the population is approximately 4 cases per 100,000 individuals. It is diagnosed through performing screening test of serum Phe level between one and seven days after birth, through pricking the heel of the newborn and test the blood obtained for phenylalanine concentration. PKU unfortunately in Egypt this screening test is not routine consequently it is discovered later and the parents of child have to cope with the burden of daily care related to the illness.[ |
ISSN | 2320–1940 |
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