Self – Care Practices of School Age Children with Nephrotic Syndrome

Background: Nephrotic syndrome is primarily a pediatric disease that is associated with high relapse rate. The nature of the disease and the side effects of medical treatments result in a great threat to children, families and society. Objective: to assess the level of selfcare practices of schoolaged children with Nephrotic syndrome and to identify the predictors of low self-care fuel shop Methods: A cross-sectional descriptive study was done to100 school-aged children with Nephrotic syndrome selected from the urology outpatient clinic at Mansoura university children's hospitals. Self-care practices of school age children with Nephrotic syndrome questionnaire (SCSCNSQ) Arabic version was developed by the researchers. Demographic, clinical, and self care requisites data were collected and analyzed using SPSS version 11. Results: most of the studied children had low level of self-care (self care deficit). Frequency of re-hospitalization, parents' socioeconomic standard, education and occupation were significant predictors for low self care. Regression analysis revealed that the Morerisky predictors in decreasing order are fathers' education, socioeconomic standard and frequency of hospital admission. Conclusion: Self-care level of nephrotic syndrome children should be assessed and educational training program should be provided to caregivers of children with risky predictors of low self care to improve disease outcome and minimize re-hospitalization.


INTRODUCTION
Nephrotic syndrome is the most frequent chronic renal disorder in children.
It is categorized into three groups, congenital, primary and secondary, and it is a clinical state characterized by edema, massive proteinuria, hypoalbuminemia, hyperlipidemia and altered immunity (1,2).Its prevalence in children is 15 times greater than in adults, with an incidence of 2 per 100.000children.The mortality rate of children with nephrotic syndrome has decreased due to more advanced Bull High Inst Public Health Vol.39 No. 4 [2009]   treatment, however morbidity rate is still increasing. (3,4)e nature of the disease and the side effects of medical treatments result in a great threat to children, families and society.As one type of chronic illness in children, nephrotic syndrome influences the child's physical, emotional, social and cognitive development. (4,5)The family faces the challenge of adapting behavior patterns and activities to accommodate treatment regimens into their daily lives. (6)ny school age children with nephrotic syndrome were hospitalized frequently with relapse of disease; the factors related to these relapses were respiratory infection, skin infection, taking steroid irregularly, and high salt diet. (7,8)erefore, relapse and infection among these school-age children with nephrotic syndrome might reflect either improper self-care practices of the child or inappropriate children care management by the families. (9,10)e self-care theory proposed by Orem is a combination of three theories, theory of self care, theory of self care deficit and the theory of nursing systems. (11,12)In the theory of self care, she explains self-care as the activities carried out by the individual to maintain their own health.There are mainly 3 types of self care requisites; universal, developmental and health deviation self care requisites.
Whenever there is an inadequacy of any of these self care requisite, the person will be in need of self care or will have a deficit in self care. (13,14,)WHO defines dependency regarding self-care activities as the inability to perform the key activities of daily life, such as maintaining personal hygiene, eating, and safety awareness that is considered one of the greatest problems. (15,16)od self-care practices of children with nephrotic syndrome can reduce the physical, emotional, and economic burdens of their families as well as prevent frequent hospitalizations and promote positive health outcomes. (17,18), a study of self-care practices of school-age children with nephrotic syndrome is needed as it will contribute to the body of nursing knowledge in this area and help in identifying the predictors of low self-care.

AIM OF THE STUDY
The aim of this study is to assess the self-care practices of school-age children with nephrotic syndrome.

RESEARCH QUESTION
1-What is the level of self-care practices of school age children with nephrotic syndrome?
2-What are the predictors of low selfcare practices among children with nephrotic syndrome and their parents?

Setting
The study was conducted in the Urology

Out patient clinic of Mansoura University
Children's Hospital.

Subjects
A sample of 100 school age children with nephrotic syndrome and their parents were selected during their attendance to the outpatient clinics either for follow-up or the need for admission who met the following inclusion criteria; Both sexes, children 6-12 years of age, at least one hospital admission, and should be living with a parent or guardian.

Study design
A cross-section descriptive design was used in carrying out this study.

Study tools
All recruited patients and or their parents were subjected to the following tools: Tool II: Self-care practice of school age children with Nephrotic syndrome Questionnaire (SBSCNSQ) that was based on Orem's theory of self-care as a conceptual framework adopted from Fan, 2008 (17) who used it for children with heart disease and modified by the researchers to be applicable for children with nephrotic syndrome.The SBSCNSQ consisted of three categories of self-care requisite: universal, developmental, and health deviation.
Universal self care requisites contain questions about: • Maintenance of sufficient intake of air, water, food (as stay in fresh air, drink water at least 6 glasses per day, skip breakfast and eat scacks as candy or ice-cream ) .
• Provision of care associated with elimination process (as wash hands after using toilet).
• Balance between activity and rest time (as sleep 8-10 hours a night and do various kinds of exercise that are not vigorous).
• Prevention of hazards to child well being (as washing vegetables and fruits before eating, rinse mouth after meal, wash hands before eating, wearing suitable clothes, brushing teeth and washing hair ).
• Promotion of child functioning (as watching TV, play with friends as usual).
• Developmental self-care requisites contain questions about: • Developmental processes (as follow friend's idea, withdraw from others during sick period, and ask for help in doing homework).

RESULTS
The results of the study were divided into two parts:-Paret I: Description of the participants:- respectively)

DISCUSSION
In this study, the school-age children with nephrotic syndrome were assessed to determine their level of self-care in relation to the three domains of self-care theory and identifying the predictors associated with low self-care (self-care deficit).
In the present study, the prevalence of nephrotic syndrome is higher among males

CONCLUSION AND RECOMMENDATIONS:
This study concluded that the level of self-care practice for most children with

Tool I : Part 1 :Part 2 :
An interview questionnaire sheet for children with nephrotic syndrome and their parents that was developed by the researcher, it includes the following: Demographic characteristics of the participants and their parents, including age, gender, school grade, number of children in the family and Parents' educational levels and occupation, and socioeconomic status were Bull High Inst Public Health Vol.39 No.4 [2009] calculated according to Fahmy and El-Sherbiny. (36)Medical information of the participants collected from their hospital medical records and includes data about their duration of illness, number of admission and causes of all re-admissions.

METHODS••
A permission to conduct the study was obtained from the medical director of the hospital, the director of the outpatient clinics and physicians in the urology clinic at Mansoura University Children's Hospital.• The medical information of the children records were reviewed to select children who met the inclusion criteria of the study.• The questionnaire was translated into Arabic separately by two bilingual translators (the two authors).The two versions were combined and revised and then back translated into English.The translation was refined after back translation until agreement was obtained among the translators.Five bilingual experts (staff members of Public Health and Pediatric nursing, Faculties of Medicine and Nursing, Mansoura University) examined the Arabic version of the questionnaire for content and construct validity and agreed upon it.• A pilot study was conducted on 10 children who were excluded from the study sample to test the clarity of the study tools and reliability of the Arabic version.The tool was relevant and applicable but some words had been modified.Reliability of the Arabic version was tested using Cronbach alpha test.Cronbach coefficient of internal consistency was reported to be 0.84.• Ethical consideration: The purpose of the study was explained to the participant and their parents and a verbal approval for their cooperation and participation in the study were obtained.• The Arabic questionnaire was read to each participant by the investigator, and then the participants completed the questionnaire independently within 30 to 45 minutes.The parents completed the demographic form within 10 to 15 minutes.• Data were collected through 9 months starting from January to September 2009.Data were analyzed using SPSS (Statistical Package for Social Sciences) version 11.Demographic criteria for the children and their parents and disease characteristics were presented as number and percentage and compared using Chisquare test.Univariate analysis was performed to evaluate the influence of individual characteristics and sociodemographic data on the low self care.Significant factors predicting low self care on univariate analysis were entered into multivariate logistic regression analysis to find out the independent predictors of low self care.Odds ratio and 95% confidence interval were calculated.P 0.05 was considered statistically significant.

(
58%) compared to females and this is in agreement with Huether (2002), Wilson and Winkestein (2005)(19,20)  who mentioned that nephrotic syndrome is common among males than females.Vogt and Avner (2004)(21)  mentioned that approximately 85% of children with nephrotic syndrome had a type of primary disease called minimal change nephrotic syndrome (MCNS) which resulted from unknown causes, this also corresponds to the results of this study as more than half of cases had unknown causes of illness.About half of the re-hospitalized children are related to disease relapse and infections and this is in agreement with Hogg et al(2000)(22)  who stated that children maybe re-hospitalized because of edema or major infection with massive edema, proteinuria and fatigue.Health state influences children's selfcare practices significantly as children who complained of more health symptoms performed fewer self-care practices.(23,24)Also increased frequency of relapse is associated with more frequent follow up visits at the clinic, resulting in more absenteeism from school, longer periods lost in illness, uncertainty and inactivity, isolation from peer groups and inability to catch up with academic sessions.(25,26)In the present study more than half of schoolage children with nephrotic syndrome had low level of self-care practices in relation to the total score of self-care practice and most of them had low self-care regarding developmental domain of self-care.Also more than one third had low self-care regarding universal and health deviation domain.There is no significant difference between children's age and low self-care and this come in contrary with the results of some studies that examined the effects of the children's demographic factors on selfcare behaviour and demonstrated that older children had a higher level of selfcare independence than younger children. (26,27)Culture difference is one of the important factors that can alter children's care dependency. (28)Primary school-age children are still according to our culture needs assistance from their parents especially during period of illness for performance of self-care activities.A study made by Wong (2007). (29)indicated that Chinese children of all ages in Hong Kong had better results in their care ability than their American counterparts.On analyzing the predictors associated with low self-care, it was found that there was no significant relations between gender and low self-care .This is in contrary with a study conducted by Wong et al (2002). (30)on 445 Chinese children indicated that girl's mastered self-care and communication competencies earlier than boys.Also a study conducted by Alserety(2003). (31)attributed this to the fact that the mothers of male children were much more involved in the care of their offspring than the mothers of female children, left girls under more pressure than boys to take over their self-care.In the present study, frequent hospital admissions is associated with low self-care practice.Improper universal self-care practices and deviation in health management in relation to diet, salt restriction, fluid intake and corticosteroid side effects increase the risk of infection and relapse.Infection and relapse are constant sources of danger to hospital admission. (32)he risk of low self care deficit increases with low educational levels.This Bull High Inst Public Health Vol.39 No.4 [2009] could be related to the fact that low educated parents can not help their children to perform correct healthy practices.This is in agreement with Schmidt (2003). (33)who reported that parent educational levels are predictors of self-care practice of school-age children with nephrotic syndrome, if the parents have high levels of education they are more knowledgeable and capable in helping their children to perform self-care practice at a high level.Low socioeconomic standards, parents' unemployment and private fathers' work in small workshops increase the risk of self care deficit this is in accordance with Phlermo (2002) and Lin, et al(2004) (34,35) who reported that socioeconomic standard correlates negatively with children low self care practice.Additionally, the absence of social support in the form of health insurance and absence of financial support as fathers' working in private work who are liable to uncompensable working days lost because of frequent visits to health care facilities adding to a financial burden of the already economically compromised households parents.
nephrotic syndrome was low.The independent predictors associated with low self-care included frequency of rehospitalization, parents' socioeconomic standard, education and occupation.In regression analysis the more risk predictors in decreasing order were fathers' education, socioeconomic standard and frequency of hospital admission.Self-care level of nephrotic syndrome children should be assessed by the nurse during hospitalization and educational training program should be provided to caregivers of children with low self care to improve disease outcome and minimize re-hospitalization.

Table I :
Distribution of the studied sample according to their general characteristics, causes and duration of illness, number and causes of re-hospitalization

Table 2 :
Sociodemographic characteristics of the families of the studied children

Table ( 4
) Univarete analysis for the predictors of low self care level among participants: CI= confidence interval, r= reference group

r= reference group Table (6): Logistic regression analysis of independent predictors of low self care.
OR= odds ratio, CI= confidence interval, r= reference group.