Application of Information-Motivation-Behavioral Skills Model on Mothers' Care and Quality of Life of their Children with Congenital Heart Diseases

Background : Families with Congenital Heart Diseases children experience a great level of anxiety and low self-efficacy. Information- Motivation-Behavioral Skills model provide mothers with guidance, empowerment and ideal use of health services that promote wellbeing and high quality of life. The study aimed to evaluate the application of Information-Motivation-Behavioral Skills model on mothers' care and quality of life of their children with Congenital Heart Diseases. Design: A quasi-experimental research design was utilized. Subjects: A purposive sample of 60 mothers with their children suffering from Congenital Heart Diseases who hospitalized or attended for follow up at Inpatient Pediatric Cardiac Unit and Outpatient Cardiac Clinic of Tanta Main University Hospital. Tools: Four tools were used; mothers’ knowledge assessment questionnaire, mothers , motivational questionnaire, mothers’ reported care sheet and children’s quality of life scale. Results: There were a statistically significant difference in mothers , knowledge, social support and mothers , reported care scores as well as the quality of life of children from pre-test to posttests of the model application with positive correlation in between immediately after the model and one month later (p< 0.05). The study concluded that the Information-Motivation-Behavioral Skills model improves mothers ' care and quality of life of their children with Congenital Heart Disease. The study recommended that the implementation of the Information-Motivation-Behavioral Skills model should be carried out for parents having Congenital Heart disease child to improve their lives.


Introduction
Congenital Heart Diseases (CHD) are one of the major congenital malformations among children, affecting approximately 1.2 % to 17% per 1,000 live births worldwide, resulting in approximately 1.5 million cases annually.The incidence in Egypt is 5-6/1000 live birth and most cases are often diagnosed in the first year of life and childhood.It is a primary cause of infants' mortality, especially in low and middle income countries within the Arab World.Congenital Heart Diseases are structural and functional anomalies that result from the heart or major blood vessels' aberrant development during intrauterine life.Mortality rates have significantly decreased for children with CHD.It is estimated that almost 85-90% of children with CHD manage to survive into adulthood (Hasan et  a significant cause of disability that requires early surgical repair following birth to improve the disease process but, it always causes a serious psychological and financial burden.The child's chronic illness and frequent hospitalizations impose extra responsibilities including provision of psychological, physical and social care during different stages of life.Thus, most parents experience depression and fear from ambiguous future for their child , s treatment, interventions and the disease outcomes (Yi, 2022; Dalir., Manzari., Kareshki., & Heydari, 2021).Chronic conditions such as CHD affect negatively all dimensions of Quality of Life (QoL) of the family members.Mothers ' self-efficacy is the perception of their abilities to perform their responsibilities in different situations.The disease challenges increase mothers '  frustration and lowered self-efficacy (Thomet et al., 2018).Children's Quality of Life refers to physical and emotional well-being, confidence level, interpersonal relations, environmental agents and attitudes.Congenital Heart Diseases impair all dimensions of quality of life leading to more familial suffering so, effective social support and motivational programs are crucial for parents have child with CHD to address their fears, assist in coping with serious stressors facing them and enhance self-efficacy (Zhang etal Each subscale contained number of questions as follows: -Family subscale contained questions number (3,4,8,11) -Friends subscale questions No (6,7,9,12).-Significant others subscale questions No: (1,2,5, 10).The total items scores were 36 points with higher scores indicated greater social support.The total scores of perceived social support was classified as the following  Less than 50 % was considered low perceived social support

Statistical analysis
All the collected data was reviewed, organized, coded and entered by utilizing SPSS version 23 software for data processing.Descriptive statistics were utilized to represent the data in various forms, including frequencies, percentages, Mean, and SD.In order to assess the relationship between the different variables in the study, a Pearson correlation coefficient (r) was calculated.Additionally, A t-test was utilized to compare categorical data between two different groups.(White, 2019).

Results
Table (1) displayed mothers , percentage distribution regarding their personal characteristics.It was showed that mothers' ages varied from 18 to 49 years old, with a mean & SD of 32.56±7.5, and half (50%) of them their age ranged from 30-40 years old.About one third (33.3%) of them had preparatory education compared with 10 % who were illiterate.In relation to occupation and marital status, 73.3%, 93.3% and 75% of the studied mothers were housewives, married and came from rural area respectively.As regards to the family income, 56.7% of the mothers didn't have enough income.Slightly less than half of the mothers (48.3%) had reported that their family size composed of five members compared to 10% of them who had only three members.About two thirds (68.3%) and 60% of the studied mothers illustrated that there were no family history of Congenital Heart Diseases and consanguineous marriages between them and their husbands respectively .(2020) who stated that, about two fifth of mothers completed their preparatory school education.
The result showed that, nearly three quarters of mothers were housewives.This could be explained in the light of mothers are the primary caregivers for their children with chronic illnesses as CHD and have to stay at home to provide care and meet their children's needs.

Zaki et al. (2018) & El -Gendy et al. (2020)
were in harmony with this study, who declared that, the majority of the participants were house wives.In relation to residence, it was realized that, three quarters of mothers and their children came from rural areas.This could be result from poor medical care and follow up during pregnancy in rural settings which can lead to premature labor and risks for neonatal congenital anomalies.In addition to absent of pediatric specialized cardiac health facilities in these areas so, they seek health care and services from Tanta university hospital.The study displayed that, the majority of the studied children had previous hospitalization.This could be due to surgical interventions and follow up.As well as their chronic illness affect functions of body systems and their immunity.Thus, become susceptible to infection especially respiratory problems and hospital readmission.This findings is consistent with Ghimire., Chou., Aljohani & Moon-Grady.( 2023 The study demonstrated that almost all of the studied mothers had unsatisfactory reported care before implementing the model .While, the majority of them had satisfactory reported care immediately and one month after IMBS model which indicated the efficacy of structured mothers , training to promote their care.This was in accordance with Sayeh etal.(2023) who explained that more than half of mothers had poor care practices toward their children with CHD before educational programs.Additionally, Abdel-Salam & Mahmoud (2018) who found that there was improvement in mothers care during the immediate and after three months of educational intervention.In terms of total scores of children's quality of life, it was observed that more than fifty percent of the studied children had poor quality of life before the model application.This may be due to poor mothers' knowledge and care provided for their children with CHD, low social support and self-efficacy in addition to the burdens associated with chronic illness as recurrent hospitalization, long term treatment, financial costs, emotional and familial problems that disrupt QoL.The study asserted that there was a statistically significant improvement in all quality of life items immediately after the IMBS model and one month later.From the researcher's view point, this could be due to the effect of IMBS Model on improving mothers , knowledge and skills which reflected positively on all dimensions of quality of life.This result matched with Kamal., Salih., & Ali.(2024) who mentioned that educational programs and regular monitoring assist parents in understanding healthcare information, making appropriate decisions, promoting health and quality of life for their children.
The study mentioned that there was a positive correlation between mothers , knowledge, reported care and children's quality of life scores post the implementation of the model.This might be due to increasing mothers , information, skills and turned them into practice during the child care consequently maximizing the children's quality of life.This finding was in agreement with Mahmoud et al. (2020), who noted that there was a statistically positive correlation between mothers knowledge and practices regarding the care of their children with Congenital Cardiac Defects.Abdelhamid., Mohamed., & Hasan.(2022) stated that there were positive correlation between knowledge and quality of life of the adolescents with CHD.This result was Contrary to Sayeh etal.(2023) who demonstrated a negative correlation between the total mothers' knowledge scores and reported practices.
The study showed that there were positive correlation between mothers , knowledge, reported care, children's quality of life scores and social support scores.This demonstrated that social support is essential factor for enhancing knowledge, practice and reflected positively on children's , QOL.This finding was consistent with LaRonde., Connor., Cerrato., Chiloyan., & Lisanti.( 2022 This explanation was supported by Sertçelik., Alkan., Sapmaz., Coşkun., & Eser.(2018); Mahmoud et al. (2020) who revealed that, the total QoL scores were low in Congenital Heart Diseases children.
); Abdallah., Mourad., & Ata.(2022) who claimed that caregivers of children with CHD require adequate social support that increase their selfesteem, wellbeing, and their abilities in dealing with difficult situations, therefore improving QOL for all family.Similarly, Carlsson & Mattsson (2022) who said that mothers of children with Congenital Heart Diseases use peer support communication through a variety of methods for exchange of emotional and informational support.It was demonstrated that mothers ' knowledge scores, reported care, children's quality of life and illness uncertainty scores were negatively correlated.This clarified that increasing mothers , knowledge and practice towards care of their children result in low illness uncertainty and ambiguity.This result was agreed upon by Maneekunwongwho declared that health care professionals should provide information and teaching programs for decreasing caregivers' uncertainty of their children , s illness.ConclusionThe current study concluded that, the Information-Motivation-Behavioral Skills model improves mothers , care of their children with Congenital Heart Diseases resulting in significant improvement in children's quality of life.Recommendations1-The Information-Motivation-Behavioral Skills model should be implemented regularly in all health facilities for children with Congenital Heart Diseases and their mothers.2-Health care services are necessary for optimizing mothers' self-efficacy and fostering recovery of their children with Congenital Heart Diseases.3-Further studies must be done to enforce application of IMBS model at different pediatric settings.

Mothers' Reported Care Sheet regarding Congenital Heart Diseases
It was designed by the researchers in the light of relevant literatures review (EL-Gendy.,Hassan.,AbdEL-Aziz., & Hafez, 2020; Madawala etal., 2022) to Tool IV: Children's Quality of Life Scale It was developed by (Varni., Burwinkle., Seid., & Skarr, 2003), translated into Arabic language and utilized by the researchers to assess quality of life of children with Congenital Heart Diseases.It contained 23 questions across 4 domains : physical, social, emotional, and school well-being.Physical domain included (walking, running, sports, lifting heavy objects, taking shower, home activities, pain, and energy level).Social domain: (social isolation, friendship, bullying, ability to do things and play).Emotional domain: (sense of fear, sadness, anger, sleep problems and worry).School well-being domain: (attention, forgetting, school work achievement, school absenteeism due to un-wellness or hospitalization).Scoring System of Quality of LifeThe scale utilized a 5-point Likert scale that ranged from "never" to "always."Each item was given a score within the range of 0 to 100, with 0 representing the lowest score and 100 representing the highest score.The scores for each child were summed and then converted into a percentage score.The

overall scores based on all domains of the quality of
The study didn , t result in any discomfort or suffering for the entire sample group.b.Data collection process ensuring privacy and confidentiality for all participants.
c. Mothers gave their consent for the study participation,with the freedom to withdraw at any time.d.Ethical committee approval obtained from Faculty of nursing, code Number of approval : 333-11-2023 3. Tools development: Study tools were developed and modified by the researchers based on the review of related literature.There were four tools used for collecting data.

Table ( 2
): illustrated the distribution of the children according to their biosocial characteristics.It was found that the age of children varied from 6-12years, with a mean & SD of 8.58± 1.98 years old.

Table ( 9) :Correlation between Total Mothers ' Knowledge, Reported Care and Children , s Quality of Life
* Correlation is significant at the (p < 0.05 level) (2-tailed).