الفهرس 
AcknowledgementOnly 14 pages are availabe for public view
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Abstract
Summary
Phenylketonuria disease is a common chronic genetic disorder that needs the caregiver’s daily effort to maintain a special diet program, rehabilitation, and dealing with the child’s disabilities. The proportions of good knowledge lead to healthy practices and care. Mothers who had good knowledge of symptom, complication and method of caring for PKU, their child tend to seek care, ability to maintain health and also help to reduce psychosocial harms(Witalis et al., 2017; El-sayed et al., 2020).
The present study aimed to assess knowledge, attitude and reported practice of mother with PKU children at center of hereditary guideline in Assuit Governorate. The study sample involved 360 PKU children who attended the center from January 2021 to July 2021. An interview structured questionnaire was developed by the researcher to collect data from mothers with phenylketonuria children which included four parts:
Part (1): Socio- economic data was included age of the child, number of sisters & brothers, child rank, number of years between this child and previous child. Also, socioeconomic scale was used which covered 16 closed-ended questions. It classified into 7 domains and socio- economic level divided into: very low: <42, low: 63-<42, middle: 71-<63 and \high: 84-<71.4. PKU child assessment when discovered of disease and current weight, height, head circumference
Part (2) Knowledge of the studied mother regarding phenylketonuria, it included 16 questions and the total scores for the knowledge were equal to 37 marks. Mothers knowledge was classified into poor knowledge >50%, fair knowledge 50% - 70% and good knowledge <= 70% ( Abd-Elkodoos et al., 2018a).
Part (3) the attitude of the studied mothers toward PKU disease. It was contained 14 statements. The response to the statements measured based on 3 points Likert scale (agree, uncertain and disagree). Mothers’ attitude was classified into positive attitude (60% and more) or negative attitude(less than 60%).
Part (4) Checklist of the reported practice for the studied mothers, it included 30 sentences and mothers’ practices were classified into either satisfactory done (60% and more) or not done (less than 60%).
The main results of the present study were:
The mean age of the studied mothers was 32.16 ± 7.70, 77.5% of them from rural areas, and 10% were living in urban slum. Regarding their social class, 52.5% of the studied mothers were low social class, 7.8% in high social level. Also, 24.7% of mothers were illiterate, while 12.2 % had faculty or high institute.
According to the child of present medical history, more than one quarter (26.7%) of them had chronic diseases. The most common chronic disease was motor disability (75.0%).
According to total level of knowledge to the studied mothers 41.7% of the studied mothers had poor knowledge regarding PKU while 40% of them had fair knowledge. Also, 18.3% had good knowledge regarding PKU.
According to the attitude score, 18.6% of the studied mothers had positive attitude toward PKU disease and 81.4% had negative attitude. 23.9% of the studied mothers had satisfactory level of practice about PKU disease and 76.1% had unsatisfactory level of practice.
There was statistically significant difference between knowledge and their educational level, working condition and social class (P.value >0.001, < 0.076).
There were statistically significant difference between mother’s attitude and their educational level, occupation, residence and social class.
According to knowledge and attitude scores, it was found that there was a significant positive correlation between knowledge and attitude scores.
Based on the results of the present study, the researcher suggested the following recommendations:
Health education and training programs should be provided to all mothers with PKU children to raise their knowledge, attitude, and practice about phenylketonuria and its management.
Improve and dissemination of health awareness concerning disabilities especially PKU children through the media (radio and television) that invades all homes in the rural and urban areas.
Furthermore research about health problem, needs and methods of caring PKU children.