|Year : 2019 | Volume
| Issue : 3 | Page : 128-140
The effect of empowerment program for mothers of children undergoing hemodialysis on arteriovenous fistula care
Asmaa M Hassan1, Naglaa F Mahmoud2
1 Department of Pediatric Nursing, Faculty of Nursing, Cairo University, Cairo, Egypt
2 Department of Pediatric Nursing, Faculty of Nursing, Cairo University; Department of Child Health Nursing, Faculty of Nursing, Badr University, Cairo, Egypt
|Date of Submission||17-Feb-2020|
|Date of Decision||03-Mar-2020|
|Date of Acceptance||17-Mar-2020|
|Date of Web Publication||20-Aug-2020|
Asmaa M Hassan
Department of Pediatric Nursing, Faculty of Nursing, Cairo University, Cairo
Source of Support: None, Conflict of Interest: None
Background Children undergoing hemodialysis (HD) have many complications, and arteriovenous fistula care through empowerment programs based on educational needs assessments will help to improve mothers’ knowledge and health practice.
Aim The present study aimed to investigate the effect of empowerment programs for mothers of children undergoing HD on arteriovenous fistula care. A quasi-experimental research design (pretest/post-test design) was utilized in this study. The study was conducted in the Center for Pediatric Nephrology and Transplantation in Cairo University Children Hospitals.
Patients and methods A purposeful sample of 30 mothers and their children from the previously mentioned setting was included. Tools of data collection included tool I: a structured interview questionnaire sheet to assess mothers and their children’s personal characteristics, tool II: assessment sheet for mothers’ knowledge, and tool III: included observational checklists about hand washing and fistula hand exercises.
Results The results of this study indicated highly statistically significant differences concerning mothers’ knowledge, and practice preimplementation/postimplementation of the empowerment program and there was a positive correlation between total mothers’ knowledge and practice regarding AVA care postimplementation of the empowerment program.
Conclusion The current study concluded that the empowerment program positively improved mother’s knowledge and practice regarding AVA care after implementation than before and recommends that empowerment programs should be established to prepare, educate, and encourage mothers for care of their children undergoing HD.
Keywords: empowerment program, hemodialysis, mothers’ knowledge and practice
|How to cite this article:|
Hassan AM, Mahmoud NF. The effect of empowerment program for mothers of children undergoing hemodialysis on arteriovenous fistula care. Egypt Nurs J 2019;16:128-40
|How to cite this URL:|
Hassan AM, Mahmoud NF. The effect of empowerment program for mothers of children undergoing hemodialysis on arteriovenous fistula care. Egypt Nurs J [serial online] 2019 [cited 2020 Oct 20];16:128-40. Available from: http://www.enj.eg.net/text.asp?2019/16/3/128/292493
| Introduction|| |
Hemodialysis (HD) is a process in which excess fluids and wastes are collected using a membrane instead of a kidney as a filter and is not a cure. HD is a long-term and expensive process that involves a specific regimen of diet and fluid, so it accompanies with lifestyle changes. In addition, physical and psychosocial stressors children face include lack of appetite, anemia, hypertension, social isolation, dependence on caregivers, and loss of sense of security (El-Melegy et al., 2016).
Provision of effective pediatric HD requires a specialized and coordinated health-care team to handle the medical, nursing, nutritional, developmental, and psychological aspects of care for the pediatric patients with end-stage renal disease (ESRD). The number of pediatric patients even in the largest pediatric centers is not large enough to provide adequate data to optimally advance the practice of HD in children (Youssef and Neemat-Allah, 2014).
In a study in Egypt by Safouh et al. (2015) which studied the causes of chronic kidney disease in Egyptian children, it has been reported that 93.5% of children who had reached ESRD were treated by HD in different university hospitals and only 6.5% were treated by peritoneal dialysis at some universities. Borzych-Duzalka et al. (2019) clarified that ensuring adequate care for children with ESRD is quite difficult in developing countries due to factors such as late referral, inadequate use of medical services, limited financial resources, poor logistics, and availability of transplantation with the limitation of laws that restrict transplantation to living related donors, and due to difficulty of pediatric transplantation in such condition. Because children need to be treated with HD for a long time, they are exposed to a high risk of complications. The main reason for hospital admission was uncontrolled blood pressure, accompanied by arteriovenous fistula (AVF) complications. As a result, continuing long-term HD faces a high risk of complications.
In spite of AVF being the most effective and prevalent technique of vascular access due to its long-lasting access, it is followed by complications such as thrombosis, hand ischemia, edema, bleeding, aneurysm, and carpal tunnel syndrome being among the common complications of AVF, while infection, thrombosis, and aneurysm are among the prevalent complications of arteriovenous graft (Adib-hajbagheri et al., 2014).Complications such as stenosis, aneurysm, infection, and bleeding that occur with AVF prevent ensuring fistula patency and lead to AVF deficiency. Nurses play a key role in assessing AVF-related complications and ensuring AVF patency. Experienced nurses can significantly reduce the risk of complications from AVFs (Ozen et al., 2017).
As recorded by many researchers in their observations and experiences in pediatrics confirm that chronic renal diseases disturb the unit of family and causes serious complications and what these children’s parents receive is unstructured and disorganized information given to them by doctors and nurses at the time of discharge, which is often forgotten due to lack of repetition and the use of medical terms in this education after discharge. Such families should live their lives in peace and physical and mental health from the time their children are diagnosed with chronic illness and should have the capacity to make decisions and to set priorities for their own needs as well as their children’s (Ghazavi et al., 2014; Minooei et al., 2016).
Long-term HD treatment places a huge burden on patients, family caregivers, and the health-care system. The caregivers of patients undergoing HD face an immense burden of care in terms of responsibility for care and may suffer from physical and psychological problems (Jadhav et al., 2014; Bayoumi, 2014). The children by their nature are dependent physically, mentally, and developmentally, so that their family members play a great role responsibility to take care of them. Children receiving HD have a physical and psychosocial strain on their family caregivers. Such family caregivers are the main cornerstone of care, directly dealing with the health centers, social, and community services, so that their awareness as well as their attitudes and practices toward the ESRD children influence their quality of care and their quality of life (QOL) (Karmalawy et al., 2015).
Mashayekhi et al. (2015) have shown that most of the families can successfully adopt themselves with chronic disease of their children. Some of them, on the other hand, may also not be effective in adapting to it. The main reason of that is the family has lack of access to accurate information about the disease, lack of sufficient support resources, high treatment costs, mental status, and social damages on the other hand. Families play a key role in ensuring health and well-being of the children and have a significant impact on their life. That is why nowadays the health-care system continuously act to change care from child-centered care to family-centered one based on empowerment. Family should therefore receive accurate information on diseases and engages in all decision-making and related care measures for their children.
Empowerment refers to the opportunities provided by professionals to family members to improve their existing abilities and competencies and to learn the new skills needed to meet their needs (Wilson et al., 2017). Family empowerment is a mechanism through which the family acquires knowledge and skills so that it can handle family life better and consequently enhance the family members’ lifestyles (Teymouri et al., 2014). This form of empowerment, which is realized by the interaction between health-care professionals and families, creates a sense of control over family life and leads to positive changes that improve the strengths, abilities, and skills of the family. Additionally, because family empowerment programs are based on educational needs assessments, they can enable nurses and physicians to provide high-quality health-care services to children with AVF, leading to peace and fostering health-care-related competencies among these children and their mothers (Minooei et al., 2016).
Health education programs based on empowerment can assists mothers to develop skills in self- management and to be higher in knowledge, caring behavior, and self-efficacy as stated by Ni et al. (2016) and Merhi et al. (2017). Fathalla (2018) added that the goal of nursing interventions in empowerment programs is to improve the ability of family members so that they can come over the existing obstacles in health context. So empowerment programs can diminish hospitalization costs and numbers, improve physical and mental function, and reduce disease signs and school absenteeism of children with kidney diseases. Mehri et al. (2017) and Arief et al. (2018) concluded that one of the main ways that nurses can care for mothers is empowering them by providing necessary knowledge to improve their ability to take care of their children.
In a qualitative study conducted by Henry (2011) regarding Egyptian women and empowerment: a cultural perspective to explore the process of empowerment as viewed by selected Egyptian women concluded that women could be empowered by acquiring knowledge about the conditions that concerned them and defined empowerment as the ability of individuals to change the conditions by having a psychological sense of personal control and a concern for having a social influence.
In an Egyptian study by Karmalawy et al. (2015) on 54 children with ESRD on HD and their caregivers, about knowledge, attitudes and practices of care givers of children with ESRD on HD at Abu El Rish Pediatric University Hospital showed that health education programs should be developed for caregivers and their children on HD to enhance their level of knowledge, attitudes, and practices to adapt with the limitations of renal failure disease and to maintain compliance.
So, the aim of the current study was to evaluate the effect of empowerment programs on AVF care for mothers of children undergoing HD. This empowerment program will help in improving mother’s knowledge and practice. Moreover, it provides guidance and recommendations that should be reflected in pediatric nursing education and in providing evidence-based data that can develop nursing practice and research in the field of pediatric nephrology nursing.
AVF care: knowledge and practice about care of fistula.
Empowerment program: is an interactive intervention that nurses use to help mothers and it is designed to aid mothers through the empowerment process, which consists of phases that correspond to the amount of trust and decision making a mother shares with health professionals.
| Aim|| |
The aim of this study was to investigate the effect of empowerment program on AVF care for mothers of children undergoing HD.
- Mothers who will receive empowerment program will have higher scores of knowledge in post-test than before test.
- Mothers who will receive empowerment program will have higher scores of reported practices in post-test than pretest.
| Participants and methods|| |
A quasi-experimental research design (pretest/post-test design) was utilized in this study.
This study was conducted in the Center of Pediatric Nephrology and Transplantation in Monira Children Hospital, Pediatric University affiliated to Cairo University, in the fourth floor which consists of one unit for acute HD, two units for chronic HD, one emergency kidney care (ICU) unit, and waiting room for mothers and relatives where empowerment program study was done. The place produces free care.
A purposeful sample of 30 mothers and their children who were available throughout a period of data collection (from December 2018 to May 2019) and attending the previous mentioned setting.
Eligibility criteria included the following: children diagnosed with ESRD and treated with HD, children with AVF who comes periodically for HD (not hospitalized). Mothers had no cognitive or psychiatric disorders and were willing to participate in the study.
Data collection tool
The following three tools were used to collect the required data:
Tool I: the structured interview questionnaire was designed by the researcher and written in Arabic language based on pertinent literature. It included the following parts:
- Part 1: personal characteristics of mothers included age, educational level, and occupation; data related to children included age, gender, education, child ranking, and residence.
- Part 2: medical history-related renal disease, dialysis, and AVF which included duration of disease, duration of HD, number of sessions per week, duration of AVF, history of previous AVF failure, and history of current AVF.
Tool II: mother’s knowledge questionnaire was developed by the researcher after reviewing the related literature. It contains 20 MCQ questions designed to assess mother’s knowledge regarding AVF and its care which were classified into four categories; each categories contain related subitems: first, general knowledge about kidney failure and HD (included five sub-questions related to kidney function, renal failure, HD process, description AVF, and AVF function); second, immediate fistula care (included two sub-questions related to preoperative preparation, and postoperative immediate care); third, long-term fistula care (included seven sub-questions related to daily activity life precaution to prevent AVF failure, different methods for assessing AVF function, exercises to strength and maintain AVF, methods of prevention injury to AVF, hygienic measures related to AVF, care before child entering HD session, and care after child ending HD session); fourth, fistula complications and its care (included six sub-questions related to infection, bleeding, clotting, embolism, deficiency of blood supply to arms, and the care related to complications).
Total number of questions were 20, each question score ranged from 0 to 2 (0=do not know or incorrect answer, 1=incomplete answer, 2=complete answer). Total score of questionnaire was 40. It was classified to unsatisfactory less than 50% (<20 score) and satisfactory more than 50% (20–40 score).
Tool III: observation checklists to assess practices of the mother included:
- Handwashing checklist which is adopted from the World Health Organization (2009). It contained 12 steps about handwashing steps about: wet hands with water, apply a single shot of soap, rub hands palm to palm, rub back of each hand with the palm of the other hand with fingers interlaced, rub palm to palm with fingers interlaced, rub with backs of fingers to opposing palms with fingers interlocked, rub each thumb clasped in opposite hand using rotational movement, rub tips of fingers in opposite palm in circular motion, rub each wrist with opposite hand, rinse hands with water, dry thoroughly.
- Fistula hand exercises: it is developed by the researcher after reviewing the related literature. It contained seven steps related to squeeze stress ball, pincher tip touch, and squeeze clothespin.
The score of each item was rated as follows: done correctly (1) and (0) if the mother did it incorrectly or not done. Total score checklist was 19. It was classified to unsatisfactory less than 50% (<9.5 score) and satisfactory more than 50% (9.5–19 score).
Empowerment program was developed by the researchers after reviewing the literature review and related researches. General principles stated in this empowering program intervention were educating, ensuring, guidance, empathy, encouragement, and the chance to express emotions to promote social support from others. It is prepared in Arabic booklet about guidelines for mothers regarding AVF and its care.
Empowerment program included theoretical and practical parts: the theoretical parts contained introduction about kidney function, renal failure, HD process, description AVF, AVF function, preoperative preparation and postoperative immediate care for AVF, daily activity life precaution to prevent AVF failure, different methods for assessing AVF function, methods of prevention of injury to AVF, hygienic measures related to AVF, care before child entering HD session, and care after child ending HD session; the practical parts contained: hand wash steps according WHO and fistula hand exercises.
Content validity was done to identify the degree to which the tools (I, II, and III) measure what was supposed to be measured .The translated tools were examined by a panel of five experts (two in the field of pediatric renal dialysis medicine and three in the field of pediatric nursing), they agreed that it is valid and relevant with the aim of the study.
Internal consistency was measured to identify the extent to which the items of the tools measure the same concept and the extent to which the items are correlated with each other. Internal consistency estimated reliability by Cronbach’s α for tool II (mother’s knowledge questionnaire) and tool III (observation checklists) were 0.934 and 0.714, respectively.
A pilot study was conducted on 10% of the total participants to check feasibility, objectivity, applicability, and clarity of items. Results of the pilot study illustrated that no modifications were needed, so the subjects of the pilot study were included to the actual study sample.
Data collection was conducted over a 6 months period extending from December 2018 to May 2019. Approval from director of the Center of Pediatric Nephrology and Transplantation in Children Hospital Cairo University was obtained before collection of data. A clear and simple explanation about the aim and nature of the study was discussed by the researcher for each mother who had a child with AVF, and their oral acceptance to participate in the study was taken.
The empowerment program was conducted through three phases (assessment, implementation, and evaluation). The total sessions to conduct an empowerment program were 10 (two sessions for assessment phase, six sessions for implementation phase, and finally two sessions for evaluation phase). Sessions of the empowerment program were held in a special waiting room, in a prementioned setting at the time when children were receiving HD sessions to avoid placing an extra burden time on children and mothers. The questionnaires were filled by the mother or through researchers for mothers who could not read or write.
Phase I, assessment. Assessment phase included three parts:
- Part 1: assessment of mother and children’s personal data and data about medical history related diseases, dialysis, and AVF using tool 1 structured interview questionnaire.
- Part 2: mother knowledge questionnaires were used for assessment of mother’s knowledge regarding AVF and its care were taken using tool 2.
- Part 3: assessment of mother’s practice using tool 3 (observation checklists). Total assessment phase done through two sessions; the duration of each assessment session was 20–30 min.
Phase II, implementation phase. Implementation phase included two parts:
- Part 1 (theoretical content): the researchers distributed empowerment program booklets for mothers that contain theoretical content and the participants were divided into small groups; each group composed of 4–6 mothers and received theoretical contents through four sessions as follows: In the first session, the participant received general knowledge about kidney failure and HD (kidney function, renal failure, HD process, description AVF, and AVF function). In the second session the researchers provide information about immediate fistula care (preoperative preparation and postoperative immediate care). In the third session, the researcher explained long-term fistula care (daily activity life precaution to prevent AVF failure, different methods for assessing AVF function, methods of prevention of injury to AVF, hygienic measures related to AVF, care before child entering HD session, and care after child ending HD session). Finally, in the fourth session, the researchers discuss fistula complications and its care (infection, bleeding, clotting, embolism, deficiency of blood supply to arms, and the care related to complications). Duration of each session was 30–45 min. Sufficient information about AVF and its care was provided through lectures using power point presentation, group discussion and question and answer based on empowerment program booklet.
- Part 2 (practical contents): demonstration and redemonstration regarding handwashing and fistula hand exercise were provided for each mother individually through two sessions as follows: the first session demonstration was held regarding hand wash through mother on herself in front of researchers; the second session demonstration was held regarding hand fistula exercises through mother on herself in front of researchers. Also, video film (WHO) was watched and empowerment program booklets that contain the practice content were given to the mother. The duration of each session was 30–45 min. The total implementation phase was done through six sessions; the duration of each implementation session was 20–30 min.
Phase III: evaluation phase for the mothers’ knowledge and practice regarding AVF and its care after the empowerment program. The structured interview questionnaires were used as post-test immediately after the four sessions of the program. Observation checklists were given to mothers in front of researchers for handwashing and fistula hand exercises; it were used as post-test immediately after the two sessions of the program. Total evaluation phase was done through two sessions; the duration of each evaluation session was 20–30 min.
A detailed description about the study, procedure, and tools were given to the mothers. Informed oral consents were obtained from all eligible participants who agreed to participate in the study. Study participants were informed that they have the right to refrain from participating in the study at any time without experiencing any negative consequences. Data confidentiality and patient’s privacy were secured. Code numbers were created and kept by the researchers to keep patients’ anonymity.
Statistical analysis of data
The collected data were categorized, tabulated, and analyzed using the SPSS computer program Version 20 (Armonk, NY: IBM Corp.). Numerical data were expressed as mean and SD. Comparison of means was performed using paired-sample t-test. Correlation among variables was done using Pearson’s correlation coefficient. Level of significance at P less than 0.05 were used as the cutoff value for statistical significance.
| Results|| |
[Table 1] shows that a relatively less than half of mothers (43.4%) age ranged between 40 and less than 050, while the minority (23.3%) were between 20 and less than 30, with a mean age of 35.50±7.21 years. As regards mother’s education more than one-third (36.7%) were illiterate, followed by 30% who were able to read and write. Concerning mothers’ occupation, the vast majority of mothers (90%) were not working (housewives), while a minority (10%) were working. Regarding attending previous educational programs about AVF care, the result illustrated that all mothers (100%) did not attend any program about AVF care.
|Table 1 Percentage distribution of personal characteristics of mothers (n=30)|
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It was evident from [Table 2] that more than half of children (56.7%) were male and their age were between 8 and less than 12 years (53.3%), with a mean age of 8.76±2.75 years. More than two-thirds of children had one to two siblings and were the first or second child in the family (66.7 and 70%, respectively). In relation to residence, more than half of the children (53.3%) were from the urban region.
|Table 2 Percentage distribution of personal characteristics of children (n=30)|
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[Figure 1] illustrated children’s education; the highest percentage of children (70%) had preparatory education followed by 23.3% who were not able to read and write, while a minority (3.3%) were of primary or secondary education.
Concerning children’s medical history ([Table 3]) the majority of children (86.7%) were diagnosed as chronic renal failure (CRF), one-third of the children (33.3%) had CRF duration of between 6 and less than 9 years, while the minority (16.7%) were between 9 and less than or equal to 12 years, and the mean duration of CRF was 5.30±3.30 years.
Also, [Table 3] highlighted the duration of HD, more than two-fifth of children (46.7%) were between 0 and less than 3 years, followed by 36.7% of children were between 3 and less than 6 years, while a minority (3.3%) was between 9 and less than or equal to 12 years; the mean duration of HD was 3.21±2.29 years.
As regards the number of dialysis sessions per week [Table 3] shows that most of the children (96.7%) received three dialysis sessions per week, while the minority (3.3%) received four dialysis sessions per week and the mean number of dialysis sessions per week was 3.03±0.18. All the children (100%) had 4 h duration of each HD session.
It is clear from [Table 4] that the highest percentage of children (70%) did not have previous history for AVF failure, while less than one-third of them (30%) had a previous history for AVF failure. Concerning the number and causes of previous AVF failure, 20% of children had one previous AVF failure and the cause of failure was unknown, followed by 6.7% of children who had AVF failure two times before and the cause was clotting, while 3.3% had three time previous AVF failure and the cause was infection.
|Table 4 Percentage of medical history of previous arteriovenous fistula failure among children|
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Apparently, [Table 5] shows that more than half of children had AVF in the left arm and they did not have aneurysm (63.3 and 56.7%, respectively). As regards the duration of the present AVF (age of the present AVF), more than half of children (56.7%) were between 0 and less than 2 years, followed by 23.3% who were between 4 and less than or equal to 6 years, while the minority (20%) were between 2 and less than 4 years, and the mean duration of AVF was 2.23±1.76 years.
|Table 5 Percentage of medical history of current arteriovenous fistula among children|
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[Table 5] also shows that more than two-fifth of children (43.3%) did not have any complication in the current AVF, followed by 30% of children who had previous infection in the current AVF, while less than one-quarter of children had previous bleeding and clotting in the current AVF (16.7 and 10%, respectively).
Regarding mother’s knowledge about care of AVF [Table 6] shows that the mean general knowledge about kidney failure and HD postempowerment program was more than the pre-empowerment program (pre=3.96±1.90, and post=8.96±1.86, respectively) and the differences were highly statistically significant. The means knowledge regarding immediate and long-term fistula care postempowerment program was more than the pre-empowerment program (pre=1.13±0.730, post=3.53±0.776 and pre=6.20±2.74, post=12.16±2.30, respectively) and the differences was highly statistically significant. Also, the mean knowledge about fistula complications and its care postempowerment program was more than the pre-empowerment program (pre=3.33±2.32 and post=9.53±1.97, respectively) and the differences were highly statistically significant. Concerning total mean mother’s knowledge, it was clear from the table that the total mean knowledge postempowerment program was more than the pre-empowerment program (pre=14.63±6.52 and post=34.20±6.37) and the differences were highly statistically significant.
|Table 6 Comparison between mothers’ knowledge regarding care of arteriovenous fistula pre-empowerment/postempowerment program (n=30)|
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Concerning mother’s practice regarding hand wash and fistula exercises, [Table 7] illustrates that the mean hand wash practice postempowerment program was more than the pre-empowerment program (pre=5.66±0.958 and post=11.16±0.874, respectively) and the differences was highly statistically significant; also the mean fistula exercise practice postempowerment program was more than the pre-empowerment program (pre=0.066±0.253 and post=6.83±0.379, respectively) and the differences were highly statistically significant. As regards total mother’s practice it was clear from the table that the total mean practice postempowerment program was more than the pre-empowerment program (pre=5.73±980 and post=18.00±0.909, respectively) and the differences were highly statistically significant.
|Table 7 Comparison between mothers’ practice regarding hand wash and fistula exercises pre-empowerment/postempowerment program (n=30)|
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It was clear from [Table 8] that there were positive correlation between total mother’s knowledge pre-empowerment program with pre-practice empowerment program and postknowledge empowerment program (r=0.534, P=0.002 and r=0.426, P=0.019). There was positive correlation between total mother’s practice pre-empowerment program with total mother’s knowledge postempowerment program (r=0.378, P=0.039). Also, there was positive correlation between total mother’s practice postempowerment program with postknowledge (r=0.375, P=0.041).
|Table 8 Correlation between total mother’s knowledge and practices regarding care of arteriovenous fistula pre-empowerment /postempowerment program (n=30)|
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[Table 9] shows that there was no statistically significant correlation between mothers’ knowledge and practice with their age, education, and residence at pre-empowerment/postempowerment program. Also, it was clear from the table that there was no statistically significant correlation between mothers’ knowledge and practice with children’s sex, age and rank at pre-empowerment/postempowerment program. Also, there was no statistically significant correlation between mothers’ knowledge and practice with children’s dialysis duration and recent fistula duration at pre-empowerment/postempowerment program.
|Table 9 Correlation between total mother’s knowledge and practices pre-empowerment/postempowerment program and mother’s personal characteristics, children characteristics, and medical history (n=30)|
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| Discussion|| |
Patient families are responsible for a large part of the care and support given to these patients and carry a considerable care burden (Talebi et al., 2016). The caregivers of patients undergoing HD face overwhelming burden of care in terms of the responsibility of caregiving and may suffer from physical and psychological problems; nurses are playing a valuable role in promoting care and empowering children and caregivers (Alnazly, 2016). So, the current study aims to evaluate the effect of empowerment program on AVF care for mothers of children undergoing HD.
Regarding the findings of this study, it was clear from the results that the total mean knowledge and practice postempowerment program were more than before. The finding of this study was supported by Bayoumi (2014) who stated that empowerment model is very significant, because through empowerment programs the information and knowledge which are the best indicators of the success of a society can be passed on to the next generation. Community education, in particular, community empowerment which is considered a national investment, is expected to increase individuals’ skills and knowledge of the society. Family-centered care programs will be able to play a key role in the management of physical and mental health of patients by empowering patients’ families and improving their adherence to the therapeutic regimens.
Also, this result was consistent with Ghazavi et al. (2014) in his study about the effect of family empowerment model on the QOL in children with chronic kidney diseases, which found that the findings of their research using the empowerment model could increase the QOL of children of age 8–12 years with chronic kidney diseases. The study, as well as many others, has clearly demonstrated the effectiveness of educational intervention in children with chronic kidney disease management. Similarly, Minooei et al. (2016) concluded that implementation of the family empowerment model could help children with CRF and their parents recognize their weaknesses and feel capable of changing their existing conditions.
The study results showed that there were highly statistically significant differences between pre-empowerment and postempowerment programs about the total knowledge and practice. In the same context, the findings of a recent Egyptian study by Fathalla (2018) on 60 patients and their caregivers about the effects of empowering families on improving QOL for children with chronic kidney diseases have shown a significant improvement in QOL following implementation of family empowerment model for children with chronic kidney diseases and for their parents. Therefore, from the researcher’s point of view the empowerment education program in this study enabled the mothers to acquire accurate knowledge and practice about AVF care which improved mother’s self-confidence by increasing their participation in caring their children and, eventually, prevention of AVF fistula complications.
Results of current study has shown that there were positive correlations between total mother’s knowledge pre-empowerment program and postknowledge instruction, and there were positive correlations between total mother’s practice postempowerment program with postknowledge. These results are consistent with El-Melegy et al. (2016) in their study on 50 patients and their caregivers about the effect of family-centered empowerment model on HD patients and their caregivers, who found a statistically significant difference between the overall mean score pre-empowerment and postempowerment intervention, while the findings contradicted with Karmalawy et al. (2015) which showed that there was no statistically significant correlation between total knowledge and total practice r=0.23 at P=0.065.
The study results indicated that there was no statistically significant correlation between mothers’ knowledge and practice with their age, education, and residence at pre/postempowerment program. Similarly, a study conducted by Karmalawy et al. (2015) found that there were was no statistically significant relationship between caregiver’ knowledge and practice and sociodemographic characteristics such as age, marital status, residency, educational level, and working status, so that from the researcher’s point of view and data analysis, caregivers’ knowledge and practices were in satisfactory levels and this was as a result of the experience gained by caregivers and HD children due to their long journey with renal disease.
Therefore, the empowerment education program in the present study enabled the mothers to be in a better position to reflect on their children’s care, to set appropriate goals, and make decisions for managing their life. So, the current findings supported the study hypothesis.
Concerning the personal characteristics of children, it was evident from the findings that more than half of children were male and their age were between 8 and 12 years with a mean age of 8.76+2.75 years. The previous results were in accordance with other Egyptian studies which reported that the mean age of children receiving HD was 8.6±4years (Safouh et al., 2015; El Shafei et al., 2018). In another research by Karmalawy et al. (2015), who found that most children in the 9–11-year age group had an average age of 9.9±2.45; female children were slightly more than half of the sample (53.7%.). Fathalla (2018) has shown that approximately more than one-half of the studied children were men, while the result contradicts Attia and Hassan (2017) who found that girls (55%) slightly outnumbered the boys (45%).
Concerning children’s education, the highest percentage of children were of preparatory education, a while minority were of primary or secondary education. These outcomes were consistent with those of Attia and Hassan (2017) who conducted a study on 30 children about the effect of cryotherapy on pain management at the puncture site of AVF among children undergoing HD. They showed that two-fifth of these children (40%) were studying in preparatory schools. Although the result is not in agreement with Wong (2014) who conducted a study on 380 children about health and wealth in children and adolescents with chronic kidney disease, and found that 30% of children were in primary schools.
Regarding medical history of children’s illness, the study results reflect that one-third of children had a CRF duration of between 6 and less than 9 years (the mean duration of CRF was 5.30+3.30 years) and in more than two-fifth of children their duration of HD was between 0 and less than 3 years (the mean duration of HD was 3.21+2.29 years). On the same line, Minooei et al. (2016) in their study on 68 children with CRF and their parents about ‘The Effect of the Family Empowerment Model on Quality of life in Children with Chronic Renal Failure: Children’s and Parents’ Views’ observed that the duration of the disease was 5 years in both the intervention and control groups. In this respect, Attia and Hassan (2017) results showed that the duration of children illness ranged from 11 to 168 months with a mean of 74.5 months or ∼6 years. The duration of their children’s dialysis ranged from 4 to 120 months with a median of 48 months or 4 years.
The study results reported that most of children received three dialysis sessions per week, while minority received four dialysis sessions per week and the mean number of dialysis session per week was 3.03±0.18. All the children had four hours duration of HD session . The results of the study are consistent with Karmalawy et al. (2015), which found that most of the studied children (98.1%) had three times frequency per week for HD, while only one child was attending four times weekly. All the children had four hours duration of HD. However, the finding is not in line with Attia and Hassan (2017) who pointed out that the majority of these children had two dialysis sessions per week (95%) for 3 h (92.5%).
As regards medical history of the previous AVF failure among children, the results showed that the highest percentage of children did not have previous history for AVF failure, while less than one-third of them had a previous history of AVF failure. In light of the findings Karmalawy et al. (2015) in their study found that in the majority of total practices the level of caregivers was satisfactory in all aspects of care as care of HD site for the child, suggesting that the caregivers had assumed strong responsibility regarding care to prevent AVF failure.
The researcher assumes that care givers and experienced nurses play an important role in AVF failure among children where caregivers and HD children acquired experience and assume strong responsibility for care to prevent AVF complication and failure due to their long experience with renal disease, as well as the experienced nurses play a key role either during cannulation in AVF or during HD care, which can significantly reduce the chance of developing complications for AVFs and therefore reduce the chance of AVF failure.
As regards previous complications for the current AVF, the results showed that more than two-fifths of children did not have complication in the current AVF, followed by 30% of children had previous infection in the current AVF, while less than one-quarter of children had previous bleeding and clotting in the current AVF. These findings are in agreement with Adib-hajbagheri et al. (2014) and Ozen et al. (2017) who indicated that although AVF is the most effective and prevalent technique of vascular access due to its long-lasting access, it is followed by complications: such as stenosis, aneurysm, infection, and bleeding. The result contradicted with Attia and Hassan (2017) who indicated that less than half of children (42.5%) developed abnormal signs at the site of their AVF.
Regarding personal characteristics of mothers, the study result showed that the highest percentage of mothers age ranged between 40 and less than 50 while a minority were between 20 and less than 30 (mean age 35.50±7.21 years). The results approximately agree with Karmalawy et al. (2015), who showed that the highest percentages of mothers were in the age group of between 30 and 40 years of age with an average age of 37.35±8.84%. The finding was disputed by El-Melegy et al. (2016), who found that the age of the studied caregivers ranged from 30 to 65 years, with a mean age of 43.18±8.60 years.
The study results showed that more than one-third of mothers were illiterate, the results of this study are consistent with the findings of a study by El-Melegy et al. (2016), who revealed that 34% of the caregivers were not able to read and write.
Concerning mother’s occupation, the vast majority of mothers were not working (housewives); this finding was confirmed by many studies (Karmalawy et al., 2015; Minooei et al., 2016; Fathalla, 2018), which indicated that the majority of caregivers were not working (79.6, 76.5, and 80.0%, respectively).
In light of the findings of the present study regarding mothers who have attended previous educational programs, the result illustrated that all mothers did not attend any educational or training program about the care of AVF and their source of knowledge were from physicians. This result is in agreement with Karmalawy et al. (2015), who found that the source of knowledge among caregivers was mostly from physicians and there was a lack of knowledge among HD nurses about their role in caring for HD children in hospital and inadequate communication between them and caregivers of HD children.
| Conclusion|| |
On the basis of our study findings, it can be concluded that that the mother’s knowledge and practice are improved after implementation of empowerment program than before.
Based on the previous findings we can recommend that:
- Children and their mothers’ needs should be identified and explored to establish empowerment programs to prepare them for lifelong care before initiating HD therapy.
- Further researches needed to emphasize the effect of empowerment programs’ intervention on improving knowledge, practice, and QOL in other chronic diseases for a larger sample and a longer period of time.
The authors acknowledge all the children and mothers who have participated in this study, and the director and staff of the Center for Pediatric Nephrology and Transplantation in Children Hospital Cairo University for their cooperation.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
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[Table 1], [Table 2], [Table 3], [Table 4], [Table 5], [Table 6], [Table 7], [Table 8], [Table 9]