FAMILY CAREGIVERS’ KNOWLEDGE AND PRACTICES AMONG CHILDREN WITH PHENYLKETONURIA: A SUGGESTS NURSING CARE PROTOCOL

Phenylketonuria (PKU) is a chronic disorder which needs family caregivers' daily effort to deal with the child's disabilities and to maintain a special rehabilitation and diet program. Family caregivers play a pivotal role in the management of childhood Phenylketonuria. The aim of the study was to suggest a protocol of care for family caregivers of children with phenylketonuria based on their needs assessment. A Methodological research design was utilized to fit the aim of the study. The study was conducted at the children clinic of metabolic disorder of the Social Preventive Medicine Center, affiliated to Faculty of Medicine, Cairo University. A purposive sample of 50 family caregivers and their children with PKU were included in the study. Data was collected using the following tools: I-Family caregivers structured questionnaire, II-Family caregiver's knowledge assessment questionnaire (Needs assessment), III- Observational checklist of family caregivers and IV- Needs assessment structured questionnaire for PKU children. The study revealed that 52.0% of the PKU children were females with a mean age of 7.8± 4.8, all family caregivers were females with a mean age of 37.7±8.1 and 64.0% of them had poor knowledge. The majority of the family caregivers had an unsatisfactory level of practice. A highly statistically significant positive correlation was found between the family caregivers' total knowledge scores and their total practices scores which means that the family caregivers' knowledge had an effect on their practices. This study proved that the nursing care protocol significantly improved the family caregivers' knowledge and practices related to the care of their children with PKU. The study recommended the publication and dissemination of the nursing care protocol in all maternal and child health care centers for families having children with PKU to provide knowledge and skills help them in caring for their PKU children at home and to raise their awareness about the disease management to prevent its complications