الفهرس 
Introduction and Aim of the StudyOnly 14 pages are availabe for public view
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Abstract
Familial Mediterranean fever (FMF) is the most common monogenic, chronic auto inflammatory disease characterized by recurrent attacks of fever, pleuritis, pericarditis, peritonitis and arthritis. The attacks are self-limiting and typically resolve within 24-72 hours. Mediterranean fever gene mutation causes hyperactivity of inflammation which leads to an increase of interleukin-1β (IL-1β) and resultant severe inflammation (Alsofyani & Hassanien, 2022).
Treatment compliance of pediatric FMF patients might be affected by social and demographic factors, such as education, age, and social network of parents. Parental knowledge about chronic diseases, such as rheumatic diseases, epilepsy, thalassemia, neurofibromatosis, and hypospadias, has been investigated previously. However, to date, no data has been reported about the parental knowledge of pediatric patients with FMF. The life-long course, long-term complications, necessity for regular treatment, and potential side effects of the medications must be well understood by parents of pediatric familial Mediterranean fever (FMF) patients (Asim et al., 2021).
Aim of the study
The study aimed to assess mother’s knowledge and reported practices toward caring of their children with familial Mediterranean fever.
Research Design
A descriptive exploratory design was utilize in this study.
Research Setting
The study was carried out in outpatient clinics at Smoha pediatric hospital affiliated to Alexandria University Hospital for one day (Wednesday) by rotation. It serves three governorates namely, Alexandria, Matrouh and El Beheira. The outpatient clinic provides free treatment services for all children suffering from autoimmune and rheumatoid disease. It works 4 days a week from Sunday to Wednesday, from 9 A.M to 12 M.D. The services provided at the outpatient clinic include children examination, diagnosis, dispensing necessary medication. Follow up of previously discharged inpatients is another important services made to ensure smooth course of the disease. Based on the hospital outpatient records, the number of patients diagnosed with familial Mediterranean fever who visit the outpatient clinic ranges from 8 to 10 patients per day (30 to 40 patients per month). And also Children Hospital affiliated to Ain Shams University Hospitals, the study was carried out in outpatient clinics for one day (Wednesday) by rotation from 9-11 A.M.The selection for this hospitals because it’s only governmental hospital which serve large group of patient coming from different areas with FMF in Egypt.
Research Sample:
A convenient sample of 70 mothers having children with FMF within 6 months at the previously mentioned setting, regardless their characteristics.
Sample size is determined by using the following equation:
Z = confidence levels is 0.95, equals 1.96,
d = error ratio is 0.05, and P = 0.50.
Three tools were used in this study
Tool I- A structured Interviewing Questionnaire: (Appendix ΙΙ)
It was designed by the researcher after reviewing the related national and international literature. It was written in a simple Arabic language to suit the understanding level of the study subject. It entails three parts as the following:
Part 1: A Personal characteristics of mothers such as age, level of education, job, number of children, type of family, consanguinity, income, place of residence, and house condition(sunning- well ventilated- water supply- waste disposal).
B: Personal characteristics of children such as age, gender, ranking, medical history of children and current weight.
Part 2: Mothers’ knowledge questionnaire was adapted by the researcher based on Balcı-Peynircioğlu et al., (2020). It was used to assess mother’s knowledge related to caring their children with FMF such as definition, causes, triggering factors, signs and symptoms, abdominal pain, nutritional elements recommended for children and hygiene, complications and prevention.
Scoring system:
A scoring system was followed to assess mothers’ knowledge related to caring their children with FMF. The right answer was scored as a one point and wrong answer was scored as zero point. These scores were summed and converted into a percent score.
It was classified into 3 categories as follow: Good knowledge if score > 70%, Average knowledge if score from 50-70% and Poor knowledge if score < 50%.
Tool II. Mothers’ reported practice: (Appendix ΙΙΙ)
It was adapted by the researcher based on AbdEL-Satar et al., (2020) & Hussain et al., (2020). This checklist was used to assess mothers’ reported practice regarding caring of their children with familial Mediterranean fever, such as care of pain (chest, abdominal, muscles and joints), weight, height or length, care for diaper rash, give oral medication, ‘diaper care, care of children having dehydration, checking oral and axillary temperature, apply tap water compression.
Scoring system:
A scoring system were followed to assess a mothers’ reported practice; each checklist was assigned a score according to sub-items, each item was evaluated as “done” was taken one score and “not done” was taken zero score. These scores were summed up and converted into a percentage score. It was classified into 2 categories as done adequately if score ≥ 85% and done inadequately if score < 85%.
Tool Ш: Parent fever Management scale (PEM):
To evaluate mother’s reported practices toward caring of children with FMF. The (PEM) consists of eight items.
Scoring system:
It measured on 5-point Likert scale and recorded prior to ensure a higher score indicated a more frequent practice as 1=never, 2= rarely, 3=sometimes, 4=mostly 5=always). The total score was 40. It was classified into 2 categories as satisfactory if score ≥ 85% and unsatisfactory if score < 85% (Walsh et al., 2008).
The results of the study revealed that:
• The results showed that less than half (45.7%) of the studied mothers are aged from 30-<40 years old with mean age 33.71 ± 1.21, more than half (51.4%) of them have University education. Also more than half (54.3%& 52.9%) of them have nucleus family and live at urban area.
• The results showed that more than half (52.8%) of the studied children aged from 6-12 years old with mean age 11.51 ± 2.31 and (80%) of them are male. Additionally, less than three fifth (58.6%) their length is 90-<120 cm with mean ± SD 101.22 ± 2.37.
• The results illustrated that, most (85.7%) of the studied children discovery of the disease at 1-< 3 years old with mean ± SD 2.99 ± 3.36 and more than three fifths (61.4%) of them are always follow up regularly.
• The results displayed that, more than half (55.7%) of the studied mothers have average levels of knowledge regarding familial Mediterranean fever and more than one third (37.1%) of them have poor levels. While, minorities of them (7.1%) of them have good level of knowledge.
• The results revealed that, most (85.7%) of the studied mother have unsatisfactory level of reported practices regarding caring of their children with familial Mediterranean fever, while minority (14.3%) of them have satisfactory of reported practices.
• The results showed that, about three quarters (75.7%) of the studied mother have unsatisfactory level of reported practices regarding the parent fever management, while nearly one quart (24.3%) of them have satisfactory of reported practices.
• The results illustrated that there is significant relation between total studied mothers knowledge level and their education at university education, work and family income.
• The results showed that there is significant relation between total studied mothers reported practices level and their education at university education, work and residence at urban area.
• The results revealed that, there are high statistically significant positive correlation between the total studied mother knowledge and reported practice regarding familial Mediterranean fever. Also there is statistically significant positive correlation between the total studied mother reported practice regarding familial Mediterranean fever and total fever management and between total fever management and total knowledge.
Fieldwork:
Data collection of the study was started at the beginning of September 2022, and completed by the end of February 2023.The study was carried out one day/week (Wednesday) by rotation. The researcher was introduce herself to mothers and was give them a comprehensive background about the study, the researcher was explain aim of the study, reassures them that information collected will be treated confidentiality and expected outcomes to each mother individually who was voluntary involved in the study. The researcher was fill in the questionnaire and time consumed around 20-30 minutes and checklist was fill in by researchers through reported mothers practice during waiting time and time consumed around (10) minutes.
In conclusion, more than half of the studied mothers have average level of knowledge regarding familial Mediterranean fever. Also, about three quarters of the studied mother have unsatisfactory level of reported practices regarding the parent fever management. In addition, there is significant relation between total studied mothers knowledge level and their education, work, and family income and there is significant relation between total studied mothers reported practices level and their education at university education, work and residence at urban area.
In the light of the study finding, it is recommended that:
• Provide educational program for mothers about familial Mediterranean fever management.
• Disseminate hand note and instruction to mothers about familial Mediterranean fever management.
• Fixed poster in the outpatient clinic and pediatric department about mothers practices regarding familial Mediterranean fever management.
Future researches:
• Effect of educational program about familial Mediterranean fever on mother’s knowledge and practices.
• Quality of life for parents and children with familial Mediterranean fever.
• Assesse factor that enhance incidence of familial Mediterranean fever among children.