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 Table of Contents  
ORIGINAL ARTICLE
Year : 2018  |  Volume : 15  |  Issue : 1  |  Page : 79-92

Factors affecting caregivers’ adherence to therapeutic regimens for their children after kidney transplantation


1 Pediatric Nursing Department, Faculty of Nursing, Cairo University, Giza, Egypt
2 Pediatric Medicine Department, Faculty of Medicine, Cairo University, Giza, Egypt

Date of Submission14-Feb-2017
Date of Acceptance20-Mar-2017
Date of Web Publication3-Sep-2018

Correspondence Address:
Kareem M Abdelhady
MSc of Pediatric Nursing, Pediatric Nursing Department, Faculty of Nursing, Cairo University, Giza
Egypt
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Source of Support: None, Conflict of Interest: None


DOI: 10.4103/ENJ.ENJ_26_17

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  Abstract 


Introduction Adherence to therapeutic regimens after kidney transplantation plays a role in graft survival and improving quality of life of children and their families.
Aim The aim of this study was to assess the factors affecting caregivers’ adherence to therapeutic regimens for their children after kidney transplantation. A descriptive exploratory design was used in the current study. The study was conducted at kidney transplantation outpatient clinic at Al-Monira University Pediatric Hospital. A convenience sample was taken of 50 caregivers of children who had kidney transplantation and attended the outpatient clinic for follow-up. Caregiver structured interview sheet consisted of three parts: personal data, assessment adherence to therapeutic regimens, and factors affecting caregivers’ adherence.
Results The results of the current study showed that approximately three-quarters of caregivers of children are the mothers. In the total level of adherence, only one-fifth of caregivers adhered to all therapeutic regimens. The highest adherence was for follow-up regimen, followed by hygiene and exercise regimens, and the lowest adherence was for medication and diet regimens. The caregivers’ factors of nonadherence are increased dependency on others, restrictions of daily living activities, transportation difficulties, and in some of them, adherence is difficult for them.
Conclusion The current study concluded that only one-fifth of the caregivers adhered to all therapeutic regimens. The more educated and urban dwelling the caregiver, the more is adherence seen in the total score of therapeutic regimen, with statistically significant difference. The caregivers’ factors of nonadherence are psychological, financial, and some related to their commitment, as adherence is difficult for them.
Recommendations The study recommended that assessment level of adherence among caregivers of children after kidney transplantation is essential to determine their actual and potential needs, and health education program must designed and implemented to maximize the adherence level.

Keywords: adherence, caregivers, children, diet, exercise, follow-up, hygiene, kidney transplantation, medication, nonadherence


How to cite this article:
Abdelhady KM, El Samman GA, Attia AA, Ahmed HA. Factors affecting caregivers’ adherence to therapeutic regimens for their children after kidney transplantation. Egypt Nurs J 2018;15:79-92

How to cite this URL:
Abdelhady KM, El Samman GA, Attia AA, Ahmed HA. Factors affecting caregivers’ adherence to therapeutic regimens for their children after kidney transplantation. Egypt Nurs J [serial online] 2018 [cited 2018 Sep 19];15:79-92. Available from: http://www.enj.eg.net/text.asp?2018/15/1/79/240349




  Introduction Top


Kidney transplantation is one of the most cost-effective interventions in pediatric population. It is the treatment of choice for children with end-stage renal disease to improve the survival rate, as well growth and development. According to the United Network for Organ Sharing database (2012), the number of pediatric transplants in USA peaked at 899 in 2005 and has remained steady at ∼750 over the past 3 years; 40.9% of pediatric patients undergo transplant within 1 year of wait-listing, and graft survival continues to improve for the pediatric recipients (Matas et al., 2014). In Egypt, actually the total number of post-kidney transplantation patients who follow-up in the nephrology clinic at Al-Monira Pediatric Hospital is ∼70–75 cases (Statistic Office of Cairo University Al-Monira Pediatric Hospital, Egypt, 2015).

Renal transplantation in pediatric patients seems to be associated with more technical complications and poorer graft survival than in adults. Recently, early transplantation can provide better prospects for survival, growth, and development in infants or small children than maintenance on long-term dialysis. Many studies agree that renal transplantation should be performed as soon as possible (Huang et al., 2013). Adjusting to life after transplantation can be challenging to pediatric renal transplant recipients and their families including transitioning from hospital to home, returning to physical activity, feeding and nutrition, school reentry, potential cognitive effects of transplant, family functioning, and quality of life (Brosig et al., 2014).

Adherence to the medical regimen is widely considered to be critical to avert late rejection episodes, graft loss, patient death, and decrease medical costs following solid organ transplantation. Rates of nonadherence in pediatric transplantation have been reported to be as low as 3% and as high as 71%, with the highest incidence of nonadherence reported among adolescent kidney transplant patients (Shellmer et al., 2011). Kyle (2014) added that adherence to prescribed medications after transplant is a fundamental preventive measure for infection and organ rejection. Adherence has been shown to be especially decreased in the pediatric adolescent population. Possible causes of lower levels of adherence in this population include lack of understanding of the disease state, low health literacy of adolescents and their parents, and psychosocial issues.

Saha and Singal (2013) reported that there are five types of variables that may affect therapeutic regimens adherence: firstly sociodemographic variables, such as age, sex, race, and number of people in the household; then health insurance variables such as formulary status of the drug being used and co-pay amount; then treatment variables such as number of medications used, duration of treatment, cost of medication or treatment, frequency of dosing, and complexity of treatment regimen; then disease factors such as state of disease, diagnostic tests, and time; and finally, patient factors, such as knowledge about disease, poor communication by healthcare provider, and patient’s own belief in the effectiveness of his/her therapy regimen. The research studies revealed that across all transplant types, the immunosuppression nonadherence rate was six cases per 100 patients per year (Ettenger and Stuber, 2014).

Poor adherence to prescribed medical regimens can lead to a number of negative consequences, including suboptimal symptom management, increased disease severity, risk of relapse, and greater healthcare utilization (Wu et al., 2013). Joost et al. (2014) emphasized that treatment adherence is critical for transplant patients because the consequences of nonadherence can result in allograft loss and may be life-threatening (Spivey et al., 2014).

Adherence to the diet prescription is critical for successful management after kidney transplantation. Poor dietary adherence places patients at risk for complications such as fluid overload, hyperkalemia, hyperphosphatemia, and malnutrition. Poor adherence to a dietary regimen usually goes undetected by healthcare providers unless self-reported by the patient or until laboratory tests are obtained and reviewed. However, the latter monitor usually reflects recent behavior. Nonadherence can confuse the clinical picture and diagnostic process (Byham-Gray et al., 2014).

An exercise program is mandatory after transplantation and might involve referral to a physical therapist to initiate a safe exercise regimen (McKay and Steinberg, 2010). Development of exercise regimens specifically tailored to an individual patient based on clinical status and exercise capacity is urgently needed. Healthcare professionals are urged to counsel transplant recipients on health benefits of regular exercise and refer them to exercise facilities and physical therapists. Counseling patients on physical activity should become a routine part of transplant recipient’s care. Although no standardized guidelines exist for exercise, most transplant programs around the world recommend that patients engage in at least 15–30 min of physical activity on most days of the week. Aerobic exercises (walking, hiking, jogging, running, gardening, dancing, bicycling, and swimming), strength and resistance training (lifting weights and riding a stationary hike), and stretching exercises (yoga and pilates) are encouraged (Thomas and Othersen, 2012).

Each kidney transplant recipient should be monitored for bacterial and fungal infections, especially in the early post-transplantation period and if receiving intensified immunosuppression. The risk of bacterial and fungal infections after intensified immunosuppression is better managed by careful observation. Minimum of environmental exposures and early evaluation and treatment if symptoms occur are necessary. Prevention strategies for infection and safe living strategies after transplant should not be limited to medications and vaccinations. A thorough education of the transplant recipient and his or her family is a very important preventive tool. Classes and printed materials are helpful and should include information on hand washing/hand hygiene, environmental exposures, activities to avoid, food safety and handling, foodborne pathogens, pets, and travel. It is also helpful for patients to have a general idea of the infections to which transplant patients are susceptible and the preventive strategies in use at their particular center (Veroux and Veroux, 2012).

Routine follow-up with the transplantation center is essential. Clinic visits and laboratory checks are a valuable reminder to patients of the importance of taking medications. When negotiating contracts with the providers, one should insist that patients be allowed to follow-up with the transplantation center at regular intervals (Danovitch, 2012). Despite the associated risks of nonadherence after transplantation, limited research has been undertaken to systematically examine adherence among pediatric patients (Shellmer et al., 2011). The information about the factors affecting adherence toward therapeutic regimens after kidney transplantation will help in developing appropriate strategies and interventions for those patients, which would increase their adherence to therapeutic regimens, improve quality of life, and decrease hospital costs. Therefore, this study was conducted to assess factors affecting caregivers’ adherence to therapeutic regimens for their children after kidney transplantation.


  Aim Top


The aim of this study was to assess the factors affecting caregivers’ adherence to therapeutic regimens for their children after kidney transplantation.

Research questions

To fulfill the aim of this study, the following research questions were formulated:
  1. Does the caregiver adhere to therapeutic regimens for their children after kidney transplantation?
  2. What are the factors affecting caregivers’ adherence to therapeutic regimens for their children after kidney transplantation?



  Patients and methods Top


Research design

A descriptive exploratory research design was utilized for the purpose of this study.

Patient

A convenient sample of 50 caregivers of children who had kidney transplantation and attended the outpatient clinic for follow-up was included with the following inclusion criteria:
  1. Children age ranged between 6 and 18 years old.
  2. Had kidney transplantation.


Setting

The study was carried out at the kidney transplantation outpatient clinic allocated on the 7th floor of Al-Monira Pediatric Hospital, which is affiliated to Cairo University Hospitals. The clinic consists of two separated rooms; one for examination and follow-up and the other for meetings, which was used to interview the caregivers in the presence of children.

Tools

The required data were collected through the following tool.

Caregiver structured interview sheet

It was developed by the research investigators in Arabic language after extensive reviewing of the related literature. It consists of three parts: part 1 assesses child and caregiver demographic data and health history, part 2 assesses whether the caregivers adhered to the therapeutic regimens for their children or not, and part 3 assesses factors affecting caregivers’ adherence to therapeutic regimens for their children after kidney transplantation.

Part 1: Demographic data and health history of the caregivers and their children

Part 1 includes age, level of education, occupation, and residence. It also includes data related to their children such as age, sex, educational level, and who is the caregiver. Moreover, it contained information regarding the duration after transplantation (years), donor, health problems discovered during follow-up visits, hospitalization and its frequency, and causes of hospitalization.

Part 2: Adherence to therapeutic regimens

It included the following:
  1. Medication (seven items).
  2. Diet regimen (11 items).
  3. Hygiene regimen (six items).
  4. Exercise regimen (one item).
  5. Follow-up regimen (three items).


Part 3: Factors affecting caregivers’ adherence to therapeutic regimens

It included the following:
  1. Medication nonadherence factors such as follows: not giving the child medication on time, not following precaution before giving the medication, not using reminders, children refusing to take medication, and forgetting to give the child medication.
  2. Diet nonadherence factors as follows: not reducing salt in child diet; giving full creamy milk, preserved food, foundry and fried foods, high-sugar food, and foods contain oils and fats; and not giving boiled or grilled foods, sea foods, and foods containing potassium.
  3. Hygiene nonadherence factors as follows: not giving instruction on hand washing to children, not avoiding contact with people having infections, exposure of children to crowded places, children not having own towels, and children not brushing their teeth.
  4. Exercise and follow-up nonadherence factors as follows: not adhering to recommended physical activities, not following up as per schedule, and not asking medical help in emergencies.
  5. Factors related to child and caregiver relationship, caregivers’ relationship with healthcare system, and caregivers’ beliefs about adherence to therapeutic regimens were also assessed.


Scoring systems

Proper adherence behavior was scored as 2, and sometimes scored as 1, and improper behavior was scored as 0. The total score was converted to percent out of 100 and then categorized as following: the score from 80 to 100% considered adhered, and less than 80% considered not adhered.

Validity and reliability

Content validity of the tool was been reviewed by three experts in pediatric nursing and medicine. The experts agreed on the content of the tools, but recommended minor question changes that would make the information clearer and more precise. Reliability of tool was performed to confirm its consistency by using α-coefficient test; it was 0.7, which means high internal consistency and consequently high reliability.

Procedure

The study tool was developed by the researchers after extensive review of literature. An official letter was sent from the Faculty of Nursing, Cairo University, to the hospital and kidney transplantation outpatient clinic directors to obtain their permission to collect the current study data. After that, an official permission was obtained from directors of study setting. Then the researchers introduced themselves to caregivers who provide care for their children after kidney transplantation. The researchers obtained the written consent from each caregiver after explanation the purpose, nature of the study, and caregivers’ rights. The researchers met each caregiver with his/her child in a special quiet room (meetings room) at the outpatient clinic to keep privacy of them before entering the outpatient clinic to fill the study tool. After that the researchers attended the outpatient clinic with the physician to detect the extent the child and his/her caregiver adhered to assessed regimens (medications, diet, hygiene, exercise, and follow-up). Thereafter, this information was recorded in the study tool. At the end of the day of interview, the researcher collected the needed follow-up data from each patient’s file about patient history, factors related to adherence, frequency of follow-up visits, and laboratory investigations, which were accessed along the 3 follow-up days. The researchers were available 2 days/week (Sunday and Tuesday) for data collection. Field work began from December 2015 to May 2016.

Pilot study

Pilot study was conducted on 10% of the total sample to test the feasibility and applicability of the study tool. Mild modifications were done to ensure practicability, and the final format of the tool was developed. The sample of the pilot study was included in the study.

Ethical consideration

Primary approval was obtained from the Research Ethical Committee in the Faculty of Nursing, Cairo University. The researcher explained the aim and nature of the study to caregivers who provide care for their children after kidney transplantation for gaining their cooperation. For children younger than 12 years, oral affirmative consent to participate in the study was obtained from them. For caregivers and children older than 12 years, written consent to participate in the study was obtained from them. They were informed about voluntary participation and their right to withdrawal at any time during the study. Caregivers and children were assured that all the gathered information was confidential and would be used only for the purpose of the study.

Statistical analysis

Data entry and statistical analysis were done using SPSS 20.0 (IBM Company) statistical software package to present the descriptive and inferential statistics. Data were presented using descriptive statistics in the form of frequencies and percentages for qualitative variables and means and SDs for quantitative variables. Qualitative categorical variables were compared using χ2-test. Statistical significance was considered at P value of less than 0.05.


  Results Top


[Table 1] reveals that 66% of children were in the age range of 12–18 years old. The mean age of the children was 13.08±2.74. Overall, 60% were males. More than two-fifths (42%) of them had primary level of education followed by 40% who had preparatory level of education. Regarding children’s caregivers, 74% of them were mothers, and 54% of them were younger than 40 years, with mean age of 38.3±10.5 years. Moreover, 52% of them had preparatory level of education or less. Most of the mothers are housewives (73.3%), and 64% of the caregivers are from urban areas.
Table 1 Percentage distribution of children and caregivers’ personal data (N=50)

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[Table 2] shows that the mean duration after transplantation was 1.75±0.88 years, and 60% of the donors were children’s mothers. One-third (34%) of the children complained of common cold during follow-up. Most children (92%) were hospitalized after kidney transplantation, with mean frequency times of 5.88±4.37. Regarding the causes of admission, 50 and 41.3% were admitted for abnormal laboratory investigation results and different health problems (such as chest infection, vomiting, diarrhea, and cytomegalovirus infection), respectively, whereas 8.7% were admitted because of rejection of the kidneys.
Table 2 Percentage distribution of kidney transplantation children according to their medical history (N=50)

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[Table 3] illustrates that the total adherence level was 20% for all therapeutic regimens. Most caregivers (90%) adhered to follow-up regimen, followed by more than half (54%) to hygienic regimen, whereas only 20% adhered to medication regimens.
Table 3 Total adherence level to medication, diet, hygiene, exercise, and follow-up regimens by caregivers of kidney transplantation children (N=50)

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The nonadherence levels of medication, diet, and exercise regimens were 80, 78, and 58%, respectively.

[Table 4] delineates that all caregivers (100%) always followed safe method for storing medications and consulted the physician if any problem was seen in the medications. Moreover, 88% always gave the child medication on time, 12% never followed the precautions before giving the medication, 42% never used anything that reminded them about the time of medication, 16% of children always refused to take the medication, and 32 and 8% of children’ caregivers sometimes and always, respectively, forget to give the child medication.
Table 4 Percentage distribution of caregivers’ adherence to medication regimen of their kidney transplantation children (N=50)

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Regarding nonadherence of children’s caregivers to medication regimen, [Table 5] demonstrates that 50% of them did not give the child medication on time owing to forgetfulness most of the time, and 57.1% of them did not know the precautions before giving the medications. All of them gave medications synchronized with nontimed issues. More than three-quarters (77.8%) and 75% of caregivers reported that the children are uncomforted owing to large number of medications and they forget to give medication owing to them being very busy, respectively.
Table 5 Percentage distribution of factors related to medication nonadherence by children’s caregivers after kidney transplantation

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[Table 6] reveals that most of caregivers (98%) always follow certain precautions before preparing food, 4% of them never reduce salt in the food, and 44% sometimes reduce salt in the food. Moreover, 16% of them never give skimmed milk, 40% sometimes give skimmed milk, and 30% always give preserved food. Regarding child’s eating characteristics after transplantation, 84% of the children always follow recommended diet. According to the method of cooking, 80% of children always eat boiled or grilled food, whereas 70% of them always eat foundry or fried food. Concerning the actual diet content, an equal percentage (64%) of them always ate foods containing high potassium and sea food. Moreover, 60% of the children eat foods containing high-sugar levels, and 36% of them eat foods containing oils and fats.
Table 6 Percentage distribution of caregivers’ adherence to diet regimen of their kidney transplantation children (N=50)

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Regarding nonadherence of children’s caregivers to diet regimen, [Table 7] shows that 50% of them ate the same food that family ate which contains salt, and 33.33% of children could not eat without salt. More than three-fifths (60.7%) of them did not know the reasons for giving up full creamy milk, and 41.9% of the children ate preserved foods as their families did, followed by 38.7% who ate preserved foods owing to low economic status. In addition, 50, 100, and 22.22% of children’s caregivers did not know the reasons for giving their children boiled or grilled food, giving foods containing potassium, and sea foods, respectively. Moreover, 54.54, 61.5, and 45.7% of caregivers did not know the reasons for avoiding foundry or fried food, high-sugar foods, and foods containing oils and fats, respectively, in children with transplantation.
Table 7 Percentage distribution of factors related to diet nonadherence by children’ caregivers

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[Table 8] shows that all caregiver (100%) always bathed their children at least every week, most of them (92%) gave instructions to children to wash hands, and 82% avoided children having contact with people having infections. Three-fifths (60%) of caregivers sometimes avoided the presence of children in crowded places, 40% of the children did not have own towel, and 24% of caregivers never asked children to brush their teeth. Moreover, the table delineates that 34% of children never practiced exercises or sports activity as prescribed. In relation to follow-up regimen of checkup, all the caregivers (100%) always did the required laboratory investigations in their children on time, 96% of caregivers went to physician if sudden symptoms appeared, and 76% always adhered to follow-up schedule, whereas 8% never adhered to follow-up schedule.
Table 8 Percentage distribution of caregivers’ adherence to hygiene, exercise, and follow-up regimen of their kidney transplanted children (N=50)

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[Table 9] shows regarding nonadherence of children’s caregivers to hygienic regimen that all nonadhering children’s caregivers (100%) forgot to instruct their children to wash hands and two-thirds (66.66%) of them did not avoid contact with people having infections because people usually do not report that they have infection. All nonadhered children’s caregivers (100%) travelled in crowded means of transportation to the hospital, 83.3% of children did not have their own towel owing to low economic status of the family, and 73.9% of children did not obey caregivers’ order to brush their teeth. Moreover, the table reveals that 59.3% of children did not adhere to physical activity because they did not like exercises. Regarding follow-up nonadherence factors, 41.66% of children’s caregivers have difficulty in transportation to the clinic.
Table 9 Percentage distribution of factors related to hygienic care, exercise, and follow-up nonadherence by children’s caregivers

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[Table 10] presents that all caregivers (100%) always trust their doctor’s instructions, most of them (96%) were interested in continuing the child’s treatment regimen, and less than two-thirds (60%) of them reported that adherence to therapeutic regimen was not affected by their relation with the children (from the caregiver’s point of view). Moreover, 38 and 6% of caregivers reported that adherence to therapeutic regimen sometimes or always, respectively, is difficult for them. In addition, 44% of them mentioned that adherence to therapeutic regimen always restricts their daily activity, whereas 32% of them always see that adherence to therapeutic regimen makes them dependent on others.
Table 10 Percentage distribution of factors related to beliefs of caregivers and children about adherence to therapeutic regimen (N=50)

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[Table 11] delineates that of 60% of nonadherent caregivers have preparatory or less level of education, whereas 80% of adhered caregivers having secondary and higher level of education (χ2=5.13, P=0.0235). Moreover, 42.2% of rural residency caregivers did not adhere, whereas 90% of urban residency caregivers did (χ2=3.67, P=0.05), and the differences were statistically significant. The other personal data of children and caregivers did not have a significant effect on adherence.
Table 11 Relationship between total adherence and personal data of children and caregivers (N=50)

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  Discussion Top


The current study results revealed that more than three-quarters of the caregivers did not adhere to medications and diet regimens, followed by more than half who did not adhere to exercise regimen; however, more than half of the caregivers adhered to hygienic regimen, and most of them adhered to follow-up regimen. Do these results answer the first research question: Do the caregivers adhere to therapeutic regimens for their children after kidney transplantation? The answer is ‘no’, as only one-fifth of the children’s caregivers adhered to the total level of adherence to all therapeutic regimens.

Regarding medication adherence, only one-fifth of children’s caregivers adhered to medications regimen; this result is in accordance with a study titled ‘A systematic review about medication adherence among pediatric patients’ by Walsh et al. (2014), which concluded that more than half of the study group adhered to their medication regimen. However, four-fifths did not adhere. This nonadherence to medication regimen in the current study may be owing to the psychosocial and financial barriers that face the caregivers and affect their compliance toward the therapeutic regimens of their children, which then leads to loss of control on the situation.

In the current study, all the caregivers always had a safe method for storing medications and consulted the physician if any problem was seen related to medications. This result is congruent with the study titled ‘Pediatric kidney transplantation a guide for patients and families’ by Bartosh et al. (2015), where guidance to store children transplant medications out of reach of small children and store medications in a cool and dry place was followed.

The study results revealed that most caregivers (88%) gave their children the medications on time. This result is in accordance to Srivastava et al. (2015) in the study titled ‘The challenges and outcomes of living donor kidney transplantation in pediatric and adolescent age group in a developing country: A critical analysis from a single center of north India’ who found that 80.5 and 61% of patients were strictly compliant to immune-suppression medications at 1 and 5 years of graft, respectively. However, less level of compliance with giving the medications on time than the current study was reported in a study done by Chappuy et al. (2010) about ‘Length of the treatment and number of doses per day as major determinants of child adherence to acute treatment’, who found that 36.2% of children completely adhered to taking prescribed medications on time.

The study shows that 86 and 56% of the caregivers followed certain precautions before giving the medication to their children, such as verbal verification that medication was taken (such as wash hands, use pillbox, and special container), and using something that reminds them of the time of medication, respectively. These results are in accordance with Ingerski et al. (2011) in the study titled ‘Family strategies for achieving medication adherence in pediatric kidney transplantation’ who found that the precautions that caregivers take before giving the children medications were verbal reminders by caregiver such as setting alarms (82.4%), caregiver verifying that medication was taken and use of a calendar (76.5%), placing medication in a convenient location (76.5%), and using a pillbox (70.6%). The caregivers may be not convinced with that items should follow in giving medications, but they always using something to remind them at the time of medication due to their fears from kidney rejection and to experience the hemodialysis dilemma again.

More than half of nonadhered children’ caregivers do not follow the precautions before giving the medications such as washing hand, prepare oral medications, persuade the child with importance of taking medication…etc. This result is congruent with Prendergast and Gaston (2010) and Ingerski et al. (2011) who found that the main cause of not following the precautions before giving the medications was the lack of caregivers’ knowledge about these precautions. These findings may be owing to the fact that more than half of the parents had preparatory-level education or less. The nonadhered caregivers may need to raise their awareness regarding these points of care to be more compliant in using precautions during giving the medications to their children.

The study results illustrate that less than one-quarter (16%) of the children always refused to take medications. This result is congruent with Ibrahim et al. (2015) whose study ‘Epidemiology of medication-related problems in children with kidney disease’ found that minority of children (8.2%) refused to take their medicines after kidney transplantation. The researchers’ point of view is that the psychological load the children experience after transplantation is huge, therefore psychological care and recreational activities should take into considerations during planning and care for such children.

The study results revealed that 32 and 8% of caregivers sometimes and always, respectively, forget to give the children their medications. This result is in accordance with Teasdale et al. (2013), in a study titled ‘Caregivers adherence toward children’s medications regimen’, who found that 38% of children’s caregivers reported forgetting doses. The cause of forgetting the medications being very busy lifestyle (Vreeman et al., 2015). The researchers observe that the main caregivers were the mothers, who have many responsibilities plus the responsibility of child with transplantation; therefore, the participation of fathers and rest of family members is essential to share the responsibilities.

More than three-quarters of nonadhered children’s caregivers reported that their children were uncomforted owing to large number of medications, and less than one-fifth of the children felt tired and hated the taste of medications (77.8, 16.7, and 5.5%, respectively). These results are in accordance with the study titled ‘longitudinal stability of specific barriers to medication adherence in pediatric’ by Lee et al. (2014) who revealed that the causes of refusing the medications and barriers toward adherence to medication regimens were ‘too many pills to take’, ‘tired of taking medication’, and ‘don’t like how the medication tastes’ (54.5, 66.7, and 25.5%, respectively).

Regarding the total level of diet adherence, only more than one-fifth of children’s caregivers adhered to diet regimen, and most children’s caregivers followed certain precautions before preparing food such as washing their hands, preparing food in good presentation, and washing the food. These results are in line with National Kidney Foundation (2016), which instructs the caregivers to follow cleaning of food before preparing. The current study results reflect that about a half of all caregivers adhered to salt restriction in their children’s foods. This result is in accordance with Bartosh et al. (2015) and Nguyen et al. (2016) who recommended that the caregivers should be guided to reduce salt in diet because it increases the chance of having hypertension after transplantation and also saves the child from handling the salt loads.

In addition, the study results revealed that less than half of children’s caregivers give skimmed milk and less than one-quarter give fully creamy milk. These results are in accordance with the guidelines of Boston Medical Center (2017), where the instructions in the patient teaching manual titled ‘After kidney transplantation’ report that the patient should drink low-fat milk (skimmed milk) because it gives the patient protein and calcium without fats. This finding may be owing to the lack of caregivers’ knowledge in giving whole milk instead of skimmed milk.

Less than one-third of all caregivers permit their children to eat preserved foods. Benioff Children Hospital, University of California San Francisco (2017) recommended that the caregivers should limit the processed foods, such as frozen meals, processed cheese, sauce, or powder flavor packets for noodles or rice, soups, and canned vegetables, because they contain large amounts of salt. The researchers’ point of view is that there is awareness among the majority of the adhered children’s caregivers toward not giving their children preserved and fast foods to keep the general health of children and graft survival. The current study results show that the minority of the children sometimes do not and never (12 and 4%, respectively) prefer the recommended diet. This result agreed with a study titled ‘Adherence to diet in pediatric patients’ by Gharfeh et al. (2015) that reported that only 12% reported intentional ingestion of a restricted food.

Most of the caregivers cooked boiled or grilled foods. These results congruent with National Kidney Foundation (2016) who recommended to give boiled and grilled food rather than fast and fried foods. However, the present study shows that three-quarters of caregivers cook foundry or fried food. These results contradicted with Ameh et al. (2016) and National Kidney Foundation (2016) who mentioned that foundry or fried foods method of cooking should be prohibited among pediatric patient after kidney transplantation. From the researchers’ point of view; consuming foundry or fried food may cause problems in lipid profile and increase gastrointestinal discomfort. Regarding diet containing potassium, the current study detected that less than three-quarters of children caregivers gave their children high-potassium diet like beans, dark leafy greens, potatoes, squash, yogurt, avocados, mushrooms, and bananas. This result agreed with Ameh et al. (2016) who reported that children caregivers should give their children high-potassium diet in the first years after transplantation owing to depletion of potassium level. The researchers observe that not all the caregivers were aware or had the knowledge about the need for potassium and its sources.

In relation to children’ caregivers’ adherence to giving their children sea food, more than half of children caregivers gave their children sea food to regulate phosphorus in the children bodies. This result is in accordance with National Kidney Foundation (2016) who reported that the caregivers should feed their children seafood like fish, and it emphasizes the need to pay close attention to calcium and phosphorus intake, because this balance of calcium and phosphorus is needed for bones of healthy children. More than three-quarters (always and sometimes) of children ate foods containing high-sugar followed by less than three-quarters of them (always and sometimes) ate foods containing oils and fats. These results contradicted with Asfaw et al. (2014) in a study entitled ‘Nutrition management after pediatric solid organ transplantation’ who found that to adhere with a dietary regimen, the caregivers must reduce foods containing high sugar, oils, and fats to their children, as they introduce the risk of hyperlipidemia. The researchers observe that healthy food intake is essential for children after kidney transplantation who takes large numbers of medications, which cause gastric discomfort, to promote comfort and lessen the complaints of stomach problem.

Concerning the total adherence level, the findings of the present study show that more than three-quarters of caregivers (78%) did not adhere to diet regimen. These results agreed with Dew et al. (2009) in ‘Meta-analysis of medical regimen adherence outcomes in pediatric solid organ transplantation’, who found that nonadherence to diet ranged from 0.6 to 8 cases per 100 patients per year. From the researchers’ point of view, the higher level of nonadherence to diet regimen is owing to poor knowledge of caregivers regarding diet regimen of their children having kidney transplantation and the healthcare personnel focusing more and more on medication regimen.

Regarding the total adherence to hygienic regimens, more than half of caregivers adhered to hygienic regimen. This result is in accordance with Kyle (2014) in the study entitled ‘Infection in kidney transplantation’ that was performed in USA; it recommended that general education should be encouraged for children’s caregivers regarding decreasing the infection risk, especially in the 6-month period immediately following transplantation and during other times of increased immunosuppression. Patients should be instructed to wash their hands as often as possible with soap and water, and family members should be encouraged to do the same. The researchers observed that the adhered caregivers to hygienic regimen understand the importance of hygiene for their children well-being and general health especially after kidney transplantation.

The current study shows that all caregivers always bathed their children at least every week, most of them always avoiding contact with people having infections (82%), less than half of caregivers (36%) avoiding the presence of children in crowded places, and minority of caregivers (8%) asked children to brush their teeth. These results are in accordance with Gheith et al. (2008), whose study ‘Compliance with recommended lifestyle behaviors in kidney transplant recipients’ in Egypt found that compliance with measures to avoid infection was partial, in which majority of the participants (89%) had a good compliance with daily bath, more than half of them (53%) avoided overcrowded transportation, and less than half of them (41%) avoided contact with infected person, but it contradicted with the current study regarding teeth care, because 41% of the children brushed their teeth after eating and before sleeping. These results of low compliance with dental care may be owing to the fact that dental care is neglected in our community.

The study results revealed that most caregivers (92%) gave instructions to their children regarding washing hands. This result is similar to the study entitled ‘Strategies for safe living after solid organ transplantation’ by Avery and Michaels (2013) where the authors state that all children after kidney transplantation should be instructed on good hygiene precautions, including hand washing, cough and sneezing etiquette, and covering open wounds.

The study result revealed that more than two-fifths of the total sample (42%) adhered to exercise regimen. This result is in accordance with the study entitled ‘Prevalence and determinants of physical activity and fluid intake in kidney transplant recipients’ by Gordon et al. (2010) who founded that most patients (76%) adhered to sedentary exercising. It is evident from the current study results that the most nonadherence was for medications followed by diet and exercise. These results agreed with Shellmer et al. (2011) whose study ‘Medical adherence in pediatric organ transplantation: what are the next steps?’ founded that nonadherence rates to diet and exercise were slightly better than nonadherence rates to medication.

Regarding the total adherence, most caregivers (90%) adhered to follow-up schedule. These findings are in accordance with Gheith et al. (2008) who found that 81% of the kidney allograft recipients attended nephrology clinics at the proper dates. The researchers observed that in spite of the importance of follow-up of children after transplantation, some of children’s caregivers did not come for follow-up regularly. This finding may be owing to more than one-third of caregivers come from rural areas and from different governorates from all over Egypt and also because of the financial problems they facing for transportation and other outlay needed for them.

Regarding the follow-up nonadherence factors, more than one-third of nonadhered caregivers (41.66%) revealed that they had difficulties in transportation to the clinic. This result is in line with Skelton et al. (2015) whose study entitled ‘applying best practices to designing patient education for patients with end-stage renal disease pursuing kidney transplant’ found that more than two-thirds (71%) of caregivers did not adhered to follow-up visit owing to long and difficult transportation to the kidney transplantation clinic. However, this result agrees with Gheith et al. (2008) who founded that more than 10% of caregivers revealed that the cause of nonadherence is expensive transportation.

More than one-third of children caregivers reported that adherence to therapeutic regimen is sometimes and always difficult for them. This result in line with Cousino et al. (2017), whose study titled ‘Parent and family functioning in pediatric solid organ transplant populations’ found that most children’s caregivers expressed the difficulty and the stress of adherence to therapeutic regimen of their children who had kidney transplantation. In addition, less than half of children’s caregivers mentioned that adherence to therapeutic regimen always restricted their daily activity. This result is in contrast with the finding of Grace (2016) in a study titled ‘The second-chance self: Transformation as the gift of life for maternal caregivers of transplant children’ where they did not report restriction in daily activities affected from adherence to therapeutic regimens. Less than one-third of children caregivers believe that adherence to therapeutic regimen makes them dependent on others. This result is in accordance with Killian (2017) in a study titled ‘psychosocial predictors of children caregivers after transplantation’, who revealed that most caregivers were dependent either on family or community regarding the treatment after transplantation.

The study results show that there is a statistically significant difference between children caregivers’ level of education and total level of adherence, with more than half of the nonadhered caregivers having preparatory or less level of education, whereas majority of adhered caregivers having secondary or higher level of education. These results contradicted with Weng et al. (2013), Urstad (2013), and Rak et al. (2016), who found that no statistically difference between caregivers level of education and total level of adherence was observed. As regarding residency and total level of adherence, more than one-third of rural residency caregivers did not adhere, whereas most urban residency caregivers adhered, and the differences are statistically significant. This result contradicted with Diseth et al. (2011) in their study titled ‘Kidney transplantation in childhood: mental health and quality of life of children and caregivers’ who found that no statistically significant differences between residency and total level of adherence were found. Moreover, the current study results contradicted with Connelly et al. (2015) in a study titled ‘Prediction of medication nonadherence and associated outcomes in pediatric kidney transplant recipients’ where the greater percentage of nonadhered caregivers lived in an urban environment. Residence closer to the transplant center may have facilitated improved access to the transplant center and other healthcare professionals.

The factors that affect the caregivers’ adherence to all regimens after kidney transplantation of their children are sociodemographic data; more adhered caregivers are the highly educated one and those having urban residency. Moreover, the factors of nonadherence are difficulties in transportation, being always difficult for them to adhere to therapeutic regimens, increase of their dependency on others than before, and also restriction of their daily activities. These findings answer second research question.


  Conclusion Top


The current study concludes that most study caregivers did not adhered to their children’s medication and diet regimens; however, most of them adhered to the follow-up regimen after kidney transplantation, and approximately half of them adhered to the exercise and hygiene regimens. The most adhered caregivers to therapeutic regimen were the highly educated ones and who lived in urban areas, with statistically significant differences. The factors of nonadherence among caregivers included some are psychological such as increased dependency and restrictions of daily living activities, some financial such as transportation difficulties, and some related to their commitment, such as adherence is difficult for them.

Recommendations

The study recommends the following:
  1. Frequent assessment of the level of adherence among children’s caregivers after kidney transplantation is essential to determine their actual and potential needs.
  2. A simplified and comprehensive booklet including guidelines about how to adhere with medication, diet, exercise, hygiene, and follow-up regimens after kidney transplantation is needed.
  3. Health education program must be designed and implemented to maximize the adherence level.
  4. Outreach multidisciplinary services must be carried out for caregivers of kidney transplantation children in their remote area to enhance their adherence to different regimens
  5. Health insurance should be responsible for all aspects of care of children with transplantation during follow-up to keep the graft from failure and/or setting up of units for kidney transplantation all over Egypt.
  6. Replication of the current study is needed on a large sample and different hospitals and settings to be able to generalize the results.
[51]

Financial support and sponsorship

Nil.

Conflicts of interest

There are no conflicts of interest.



 
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    Tables

  [Table 1], [Table 2], [Table 3], [Table 4], [Table 5], [Table 6], [Table 7], [Table 8], [Table 9], [Table 10], [Table 11]



 

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