Evaluation of Parents’ Knowledge about Nutritional Management of Children with Phenylketonuria

Objective(s): to evaluate parents’ knowledge about nutritional management of children with phenylketonuria and to find out the differences between parents’ knowledge about nutritional management and their demographic variables of parents such as (parental age and socioeconomic status). Methodology: A non-experimental design; was conducted on parents of phenylketonuria child, from the period 3 June to 5 October 2022. A Non-probability sample of 35 PKU children and their parents were selected conveniently from the hospitals that are select for the study. A questionnaire is constructed for the purpose of the study. It composed of two parts: The validity analysis shows very good evaluation for knowledge scale. Data are analyzed using Statistical Data Analysis by using SPSS. Results: Results showed that (62.9%) of the parents showing moderate knowledge of Parents about and nutrition knowledge of children with phenylketonuria. Conclusions : Overall evaluation of Parents’ knowledge showing moderate knowledge about nutritional management and the study confirms that older parents are better knowledge. Recommendations: The study recommends that parents of phenylketonuria children should be very well-oriented and greatly aware about the importance of nutritional management, and also offers an educational program for parents' of children with PKU.


Introduction
Phenylketonuria identified as (phenylalanine hydroxylase deficiency) is an autosomal falling syndrome of phenylalanine metabolic rate, in which particularly high phenylalanine focuses cause mind dysfunction. If crude, these mind dysfunction consequences in severe knowledgeable disability, epilepsy and behavioral difficulties. PKU controlling has been for history complex, demanding lifelong adherence to a Phe limited diet (i.e., escaping consumption of great protein nutrition, such as meat, fish, eggs, breads, and milk produces) ( Early Phenylketonuria diagnosis and treatment is vital in order to prevent irreversible damage such as neurological impairment and intellectual disability .Largely, PKU have not been systematically evaluated and reported in Iraq including Kurdistan Region; Northern Iraq. Because of that, metabolic disorders, including PKU, have possibly been underestimated. The important of this letter is to raise awareness and bring to the forefront the urgent need for appropriate treatment of children in Iraq, in addition to highlighting solutions for going forward. (18) The Importance of study in PKU treatment is to maintain blood Phe under rigorous nutritional management control, especially during the first years of life. Nutrition for children with PKU must be significant importance and focused, to prevent increased phenylalanine in the blood, which negatively affects the lives of children and causes them to mental and intellectual problems. The protein substitute is usually given at mealtime at least three times per day in order to optimize its metabolism (5) (6) (17) .
The study aims to evaluate parents' knowledge about nutritional management of children with phenylketonuria and to find out the association between parents' knowledge about nutritional management and their demographic variables of parents.

Methodology
A non-experimental design. was conducted on parents knowledge of phenylketonuria child in Baghdad city from the period 3 June to 5 October 2022.
A convenience sample of 35 PKU children with their parents (father and mother) was selected conveniently from Ibn Al-Baladi for Maternity Which are located in Baghdad city/Al-Rusafa from Ibn Al-Baladi hospital for Maternity and children.
The Scientific Research Ethical Committee at the University of Baghdad, College of Nursing has approved the study to be conducted. All participants have signed a consent form to present their agreement for such participation and protect their human rights.
The study instrument was constructed through reviewing the literature related to object of study. It includes two sections: Demographic characteristics concerning parents' such as age, Residential environment and Socio-Economic-Status (7) .
Parents' knowledge about nutritional management of Phenylketonuria Disorder; Describes how parents following a healthy nutritional program for children with phenylketonuria, and the benefit of this program, and it contains (12) items. It is recorded according to the likert standards of 2 points: (1 = I know, 0= I don't know).
Content validity of the study instrument is determined through panel of experts and internal consistency reliability is obtained through splithalf technique and computation of Cronbach alpha correlation coefficient of (r=0.887).
The data was collected through an interview parents' children, it took a time of (20-30) minutes.
The following statistical data analysis approaches were used application of the statistical package (SPSS) ver. (26.0). Descriptive Statistical Data Analysis; Frequency, percent, mean of scores, mean, standard deviation, total scores and ranges. Inferential Statistical Data Analysis; T-test and one -way analysis of variance (ANOVA).   This board presents the objects related to parents' knowledge around application of nutritional management for children with phenylketonuria; the mean scores for item during the evaluation indicate moderate side by side of knowledge as seen amongst all items.  is no significant differences in parents' Knowledge with respect to mother's age but show significant in parents' knowledge about nutrition with concern to mother's age at p-value= .020.

Table (6): Analysis of Variance for Parents' Knowledge With Concern to Socioeconomic Status (N=35)
This table shows that here is no significant difference in parents' knowledge with concern to their socioeconomic status.

Discussion
The results show parents are middle age adults, one third of them is with moderate socioeconomic status.
Parents' knowledge about nutrition of children with Phenylketonuria was fair.
This result was congruent with Rocha and his colleagues (2019), which shows the level of nutritional status and program toward PKU children by parents are moderate and suitable for the sample size (13) (14) .
These results agree at over all with Rajih and mohammed, (2020). Who found totally the study illustration responses at the pretest are just knowledge with a numerical mean of scores (1.342 (15) .
This result is supported by Jameson and Remmington (2020), who found the parents of PKU child follow up low protein nutrition protocol with better nutrition indicators (higher fruit and vegetable consumption) was high level of practices. Furthermore, encouraged low protein eating consumption for PKU children. Still and indeed logical to use low protein diet guidance (16) .
Through the course of information analysis, the research findings depict that knowledge' about nutrition are affected by father's age and mother's age. Such results can be understood in a way that the older the parents the better are the Parents' Knowledge.
Related concerning father's age, the results show significant difference in overall parents' Knowledge with concern to father's age at (pvalue, 0.018) and mainly with parents' knowledge about nutrition at (p-value, 0.014) and there is no important difference in overall parents' Knowledge with regard to mother's age at (p-value, 0.849) but show significant in parents' knowledge about nutrition with regard to mother's age at (p-value, 0.020).
Concerning socioeconomic status, the findings show that around is no important difference in parents' Knowledge with concern to their socioeconomic status (p-value, 0.912).
A researcher believes that the socio-economic status is no important difference in the study, an indication of the burden on the parents of children with PKU.

Conclusions
The study concluded that parents' knowledge about PKU disorder is fair, also the older parents and the older age of marriage are more knowledgeable.

Recommendations
Created on the early listed conclusion, the study recommends that; Parents of phenylketonuria children should be very well-oriented and greatly aware about the importance of nutritional management, and also offers an educational program for parents' of children with PKU. should be supported in order to help them dealing effectively with such public health problem.