The most preferred type of enteral nutrition for the medium and long term nutritional assistance is through percutaneous endoscopic gastrostomy (PEG) tubes due to ease of insertion and low complication risks (Ak[latin dotless i]nc[latin dotless i], 2011; Ekin, Ucmak, Oruc, Tuncer, & Yalc[latin dotless i]n, 2015). Therefore, determining caregivers' awareness about PEG tube feeding and care practices can help nurses with developing educational programs and effective strategies for safe enteral feeding by informal caregivers.
Background
Knowledge of feeding standards and PEG treatment protocols for patients fed enterally by caregivers is of great importance for proper nutrition and prevention of potential early-stage complications (Heuschkel et al., 2015; Rahnemai-Azar, Rahnemaiazar, Naghshizadian, Kurtz & Farkas, 2014; Sobotka, 2017). If the risks associated with PEG application are not found early, there can be life-threatening issues. Therefore, precautions against potential complications associated with PEG application need to be taken and patients and their family should be educated. Preventive steps include monitoring PEG-fed patients for complications, administering anticoagulants and antithrombotic agents, and giving prophylactic antibiotics. Early diagnosis of complications allows for quick intervention and efficient treatment (Hucl & Spicak, 2016).
Studies evaluating the level of knowledge of enteral nutrition worldwide are mainly conducted on healthcare team members. These studies reported that the knowledge of enteral nutrition was not at the desired level even among healthcare team members (Kochan & Ak[latin dotless i]n, 2018; Madigan, Fleming, McCann, Wright, & MacAuley, 2007; Ozbas & Baykara, 2018; Theilla, Cohen, Singer, Liebman, & Kagan, 2016; Uysal, Eser, & Khors[latin dotless i]d, 2011). Wanden-Berghe, Patino-Alonso, Galindo-Villardon, and Sanz-Valero (2019) reported that problems with obstruction of the feeding tube were encountered during enteral feeding. Uysal et al. (2011) reported that 100% of the nurses gave water through the tube after giving nutritional products through the PEG tube. Ozden, Karagozoglu, Guler, and Bulbuloglu (2016) determined that 32.7% of caregivers have problems with gastrostomy care, and the burden of care in caregivers has increased because of these problems.
In research by Green, Townsend, Jarrett, Westoby, and Fader (2019), approximately half of the caregivers for patients (children and adults) who are fed with an enteral tube have encountered the problem of tube obstruction, and patients and caregivers have been trained to eliminate tube obstruction. Esenay, Sezer, Kursun, and Gedik (2016) determined that all caregivers received dressing training, experienced most problems with the insertion site dressing, and wanted to receive applied dressing training (55%). The same research reported that caregivers received training before discharge, and 60% found the training they received to be insufficient (Esenay et al., 2016).
More research is needed to assess the knowledge and practices of informal caregivers. Determining caregivers' knowledge needs and their approaches to solutions will shed light on avoiding PEG-related complications and improving patients' and caregivers' quality of life. In meeting patients' nutritional needs and avoiding the complications associated with the PEG tube in the early period, increasing the level of knowledge and practices of caregivers who feed patients via the enteral tube is of great importance. In addition, the research findings may shed light on identifying nutrition-related issues in patients provided with PEG tubes and the detection of inaccurate knowledge and caregiver practices.
Objectives of the study are as follows:
1. To assess the knowledge of enteral nutrition of informal caregivers caring for patients fed through a PEG tube.
2. To evaluate these caregivers' practices regarding the implementation of enteral nutrition through a PEG tube.
3. To determine the personal characteristics associated with the knowledge of enteral nutrition of informal caregivers caring for patients fed through a PEG tube.
4. To determine the informal caregivers' characteristics associated with the implementation of enteral nutrition practices through a PEG tube.
Methods
This research aimed to evaluate the informal caregivers' knowledge of and practices with enteral nutrition when caring for patients fed through a PEG tube. This research is a descriptive observational design.
Setting
The research was carried out between October 2019 and February 2020 in an internal medicine ward, a neurology clinic, and palliative care units in a training and research hospital in Istanbul. Initially, the researchers assessed data about the clinics or units that implement enteral nutrition frequently at the hospital. The data provided by hospital administration showed that enteral feeding through a PEG tube is conducted frequently. Following the evaluation of these data, the researchers decided to do the research at the selected units (internal medicine service, neurology clinic, and palliative care unit).
Participants
The research population consists of 134 individuals who will be responsible for the care of patients fed through a PEG tube. The study took place while patients were being cared for through the internal medicine service, the neurology clinic, or palliative care units of a training and research hospital. Accordingly, the desired sample size was calculated to ensure the number of research participants would provide reliable statistical estimates at the end of the data collection process.
Based on an incidence of 0.5 in the research population consisting of 134 subjects, it was concluded that a minimum of 99 people should be surveyed with a 95% confidence level and +/- 0.05 margin of error.
Sampling criteria were set as follows:
1. Being an informal caregiver during the hospital stay for administration of enteral feedings and care of the PEG tube on the internal medicine service, neurology clinic, or palliative care units;
2. Providing the patient's PEG tube care for at least 1 week;
3. Volunteering to participate in the research; and
4. Being 18 years of age or older.
All caregivers meeting the study criteria were approached. All caregivers who consented to participate were included in the study. The research sample consisted of 130 caregivers. Data were obtained from 126 subjects because three patients died of medical reasons during data collection, and the caregiver of one patient declined to participate in the research. The desired sample size was accomplished with 126 subjects in the survey.
Ethical Considerations
Ethical approval was obtained from the TR Ministry of Health University of Health Sciences Umraniye Training and Research Hospital Clinical Research Ethics Committee (No. B.10.1.TKH.4.34.H.G.P.0.01/152). Institutional permission was obtained from hospital administration. The researchers prepared data collection tools and obtained verbal and written informed consent from subjects.
Data Collection
Data were collected between October 2019 and February 2020. Data were obtained by both survey and observation method. Completion of the surveys and observation were completed in approximately 15-20 minutes. Data are reported in the article using the STROBE checklist.
* Survey application: The informal caregiver's knowledge of PEG tube nutrition practices was assessed using the Knowledge Assessment Survey.
* Observation: Caregivers were observed using the Nutrition Practices Assessment Survey while providing PEG tube care to patients and feeding them through the PEG tube. Observation of the caregivers during the care practices for enteral nutrition through the PEG tube was completed in about 10 minutes.
* The observer obtained a certification approved by the Ministry of Health of the Turkish Republic. This certification is renewed in certain intervals based on regulations determined by the Ministry of Health of the Turkish Republic. The observer had a master's degree in internal medicine nursing. The observer currently serves as a clinical nurse nutrition specialist at the hospital. The observer (G.K.) participates actively in conferences and educational programs.
* To avoid observation bias, the informal caregivers were not aware that they were being observed when giving enteral nutrition through a PEG tube. However, hospital administration was informed that researchers would observe the caregivers. Therefore, the caregivers did not notice that they were being observed while administering enteral nutrition through the PEG tube or when caring for the tube.
* Testing interrater reliability: Before conducting the observation, both researchers conducted a pilot study for testing interrater reliability. Both researchers observed the caregivers at the unit separately, and both observations were compared. Differences of observations were discussed. The observations were ended when the researchers did not find any difference between both observers' scores. A total of 11 caregivers were observed until the observers did not find any difference in terms of observations of enteral feedings and tube care.
Instruments
Caregivers' and patients' characteristics were collected using the Caregiver Information Survey and the Patient Information Survey. In addition, the Knowledge Assessment Survey and the Nutrition Practices Assessment Survey were used as data collection tools in the research. All surveys were developed by the researchers based on
available literature on enteral nutrition.
The researchers rated each item of the Knowledge Assessment and Nutrition Practices Assessment surveys to test the content validity index (Pierce, 1995). Eight faculty members in the field of nursing were asked to assess the surveys for clarity and appropriateness. In line with the recommendations, each item was evaluated and the forms were finalized. These experts were asked to rate the suitability of each survey item with a score between 1 and 4 (1 point: not suitable; 2 points: somewhat appropriate/need a revision of the statement; 3 points: quite appropriate/appropriate but slight change required; 4 points: very appropriate). These scores were computed, and as a result, the surveys were revised by the researchers according to the content validity results. The content validity index of the knowledge survey was 97.39% and that of the practices survey was 100%. The final form of the survey was tested with pilot research (n = 5). The pilot study showed that the survey was easy to apply, and the participants and researchers did not have any difficulty filling out the surveys.
The researchers asked the participants to fill out the Knowledge Assessment Survey questions. Respondents read and responded to the questions on their own. The caregivers were then observed in their patient room while they were implementing PEG tube care. The researchers filled out the Nutrition Practices Assessment observation checklist unobtrusively, so that the participants did not notice that they were being observed as the researchers rated the caregivers' implementation practices.
Caregiver Information Survey
The survey includes 14 questions related to the sociodemographic characteristics (age, gender, and level of education) of caregivers, occupation, state of employment, perceptions of economic status, type of family, chronic disease status, and education on feeding tube practices including patients fed with a feeding tube.
Patient Information Survey
The Patient Information Survey contains nine questions to determine the patient's age, gender, disease history, if living with the patient, the duration of the patient's need for care, and the level of independence in continuing daily living activities.
Knowledge Assessment Survey
Researchers prepared this data collection tool to evaluate the knowledge level of individuals caring for patients who were fed with a PEG tube. There are 24 statements that are answered as "correct," "incorrect," or "I don't know/I have no idea." Statements were answered by placing an "X" next to the appropriate response. The statement correctly answered was given 1 point; a response of "I don't know/I have no idea" or an incorrect answer was given 0 points. The responses of statements in the survey were configured as "correct" for statements 1, 4, 7, 9-11, 13, 15, 16, 18, 20, 22-24 and "incorrect" for statements 2, 3, 5, 6, 8, 12, 14, 17, 19, and 21. The possible survey scores range from 0 to 24. High scores indicate a high level of knowledge.
Nutrition Practices Assessment Survey
Researchers prepared this survey to assess the nutritional practices of people who care for patients fed with a PEG tube. It contains statements relating to the handling of the enteral nutrition product, the dressing of the feeding tube, and the rotation of the plate 360[degrees] during the dressing process, as well as monitoring and administering the enteral nutrition products. The observation checklist survey is made up of 15 statements. The researcher observed the caregiver to assess if each statement was fulfilled. Each statement in the survey was given 1 point if applied and 0 if it was not applied. Thus, the possible survey scores range from 0 to 15.
Statistical Analysis
For the data analysis, descriptive statistics (number, percentage, mean, standard deviation), and regular distribution tests (histogram, Shapiro-Wilk test, coefficient of variation, calculations of skewness, and kurtosis) were used. The researchers aimed to determine whether the knowledge and practice assessment scores (observation scores) differed in terms of personal characteristics; hence, the researchers compared the knowledge and practice assessment scores (observation scores) with caregivers' characteristics.
Parametric tests were used for the data that met the assumptions (size of each group or normal distribution) for parametric tests. First, the knowledge and practice assessment scores were compared with variables that met the requirements for using parametric tests (independent-samples t test) (such as caregivers' gender and the presence of chronic illness). Second, the knowledge and practice assessment scores were compared with variables that did not meet the requirements for using parametric tests (Kruskal-Wallis H test and Mann-Whitney U test) (such as receiving PEG tube training, education, and caregivers' family type). The Mann-Whitney U test was used to compare quantitative variables that did not show a normal distribution between two groups. More than two quantitative variables that did not show a normal distribution were compared using the Kruskal-Wallis test. Relationships were tested by Pearson's correlation analysis between quantitative variables. The statistical significance level was reflected as p < .05.
Results
Characteristics of Caregivers and Patients
The caregivers' mean age was 45.11 years +/- 10.20, and most (75.4%) were women. Nearly half of the caregivers were primary school graduates (49.2%), and most of them (70.6%) did not report a history of chronic disease. All participants were trained in nutritional practices with the PEG tube. Most of the training (69.8%) was given by nutrition nurses (Table 1).
The mean age of the patients was 72.67 years +/- 15.73. The patients were fed through the PEG tube for a mean of 10.64 months +/- 22.42. Nearly 15% of patients, (14.3%) informal caregivers received professional caregiver support at some time during the PEG nutrition experience (Table 2).
Caregivers' Knowledge of Nutritional Practices With a Percutaneous Endoscopic Gastrostomy Tube
The sample's mean score was 18.90 +/- 3.13 (range = 0-24) on the Knowledge Assessment Survey for feeding with a PEG tube. The mean score and the percentage of correct answers indicate that caregivers' knowledge of feeding practices with a PEG tube was good (i.e., adequate) (Table 3). The highest correct answer for the sample (99.2%) addressed storing enteral nutrition products. The least correctly answered question was about care of the PEG tube insertion site using an antiseptic solution (correct response rate only 41.3%).
Nutritional Practices of Caregivers With a Percutaneous Endoscopic Gastrostomy Tube
The subjects scored 13.41 +/- 1.45 points (out of 15 points) on the Nutrition Practices Assessment Survey. The observation results indicate that the caregivers could perform PEG tube feeding steps correctly while feeding with a PEG tube (Table 4). The most frequently and correctly (99.2%) applied interventions during the observation was giving water after administering medication and enteral nutrition products through the PEG tube, and using gloves during PEG tube dressing. It was observed that the least frequently and correctly (99.2%) applied interventions during the observation was the daily rotation of the PEG tube (46.8%) and checking the number written on the PEG tube before giving the enteral nutrition product (77.8%).
Comparison of Knowledge and Practices Survey Scores According to the Personal Characteristics of Caregivers
Primary school graduates obtained statistically lower scores on the Nutrition Practices Assessment Survey than secondary and higher education caregivers (p < .05). However, there were no statistically significant differences between Knowledge Assessment Survey scores in terms of education level (p> .05) (Table 5).
Scores of the Knowledge Assessment Survey obtained by informal caregivers of children were statistically significantly lower than the scores of caregivers for adults. In addition, the scores on the Knowledge Assessment Survey of caregivers not living in a nuclear family were found to be statistically significantly lower than the scores of subjects living in a nuclear family (p < .05) (Table 5).
No statistically significant difference was detected between the Knowledge Assessment Survey and Nutrition Practices Assessment Survey scores in terms of the gender of caregivers (p> .05). In addition, comparisons did not find a statistically significant difference between the Knowledge Assessment Survey and Nutrition Practices Assessment Survey scores in terms of the type of healthcare professionals who provided training for caregivers (p> .05) (Table 5).
Comparison of Knowledge Assessment Survey and Nutrition Practices Assessment Survey Scores
A statistically significant positive and moderate correlation was determined between the Knowledge Assessment Survey and Nutrition Practices Assessment Survey scores (r = .42, p < .001). Analyses revealed a statistically significant, negative, and low correlation between caregivers' age and Knowledge Assessment Survey scores about PEG tube nutrition practices (r =-.20, p < .05).
Discussion
Training of informal caregivers who perform PEG tube care is vital to safely maintaining enteral nutrition in the home environment after discharge. Knowledge needs and evidence-based recommendations should be considered when deciding on the educational method to train caregivers. Structuring training programs on nutrition practices with a PEG tube based on evidence is important for training and achieving educational outcomes. The current study identified the caregivers' knowledge and nutrition practices for a PEG tube.
Discussion of Caregivers' Knowledge and Nutrition Practices With a PEG Tube
For informal caregivers to provide safe and cost-effective enteral nutrition with a PEG tube, it is necessary to investigate their knowledge while practicing care in the hospital environment. This study examined knowledge of and care given by caregivers. The mean score obtained from the knowledge survey (18.90 +/- 3.13) indicated that the caregivers' knowledge of PEG tube feeding practices was good. The hospitals in Turkey provide nutrition counseling since 2010 for all patients who need nutritional intervention, and the hospitals provide a nutrition support team/unit ("Guide to Safe Practice for Total Parenteral Nutrition," 2010). In this study, the caregivers' adequate knowledge of PEG tube feeding practices could be linked to the nutrition support team's educational activities in hospitals.
Unopened enteral nutrition products should be stored in a dry, cool (15-25 [degrees]C) place without sunlight until the expiration date (Best, 2008; MEGEP, 2020; Tamer, 2018). The current study found that the most frequent correct answer of the sample was about storing enteral nutrition products. Similarly, another study reported that 90.5% of caregivers gave correct answers to the statement regarding the nutritional product's storage condition (Sezer, Koken, & Celik, 2020). However, unlike this research, another study (Ozden et al., 2016), determined that only 10.2% of caregivers of patients fed with a PEG tube gave correct answers to the question about nutritional storage conditions (Ozden et al., 2016). The result obtained in our research suggests that caregivers had sufficient knowledge of nutritional products' storage conditions.
In a study conducted by Lim et al. (2018), nearly half of the caregivers (49.5%) reported that they experienced PEG tube obstruction and these obstructions developed after drug administration. Our study found that the Knowledge Assessment Survey's most frequent correct answer was about giving water (96.8%). Sezer et al. (2020) found that individuals caring for adult patients gave water to a large extent (95.2%) immediately after providing nutritional products (Sezer et al., 2020). The research findings' similarity indicates that caregivers have sufficient knowledge of giving water after providing enteral nutrition products. Another study (Alsaeed, Mobilya, Blandford, Smith, & Orlu, 2018) reported that 64% of caregivers received training to prevent enteral feeding tube blockages.
Cleansing the PEG tube site using an antiseptic solution when a PEG tube dressing is applied is recommended to prevent infection (Roveron et al., 2018). The most in correctly answered question on the Knowledge Assessment Survey was about care of the PEG tube insertion site using an antiseptic solution (correct response rate only 41.3%). Remarkably, the result revealed that 58.7% of the caregivers did not know the answer to this question correctly. This result indicates that caregivers need training in wiping the PEG tube insertion area with an antiseptic solution. Boland et al. (2017) found that nearly half (48%) of the patients fed with an enteral tube developed an infection. Lim et al. (2018) reported leakage in 16.2% of cases at the PEG tube entrance site in adult patients fed enterally at home. In a systematic review by Balogh, Kovacs, and Saxena (2019) analyzing 18 articles involving 4,631 patients between 1994 and 2017, it was reported that 10.3% of the patients developed hypergranulation tissue and 8.3% developed a local infection. These results indicate that the PEG tube dressing technique needs to be explained practically to caregivers.
Rotating the plate clockwise is recommended when dressing the PEG tube to prevent buried bumper syndrome (Heuschkel et al., 2015; Roveran et al., 2018; Scott & Bowling, 2015). Our study found that the item about rotation of the PEG tube during site skincare in the Knowledge Assessment Survey was the least known. The current study found that 58.7% of the caregivers answered this question correctly. Sezer et al. (2020) observed that 66.7% of the caregivers turned the tube's plate (Sezer et al, 2020). Unlike our research, another study observed that the rotation of the tube's plate during PEG tube dressing was checked by 100% of the parents of children with a PEG tube (Pars, 2016). In the research conducted by Esenay et al. (2016), 80% of the mothers reported that they encountered problems with PEG dressings during home monitoring of 26 children fed through a PEG tube. These results show that caregivers need to improve their knowledge of caring for PEG dressings.
Discussion of Data About Enteral Feeding Practices
Complications associated with a PEG tube often result from inadequate education of caregivers. Caregivers can safely identify and manage possible complications with theoretical and practical training (Schweitzer et al., 2014). In addition to caregivers' PEG tube care knowledge score, the researchers observed caregivers' practices on PEG tube care. As a result of the observation, the caregivers obtained a score of 13.41 (out of 15) on the Nutrition Practices Assessment Survey in this research. This score indicates that the caregivers performed the steps of feeding with a PEG tube wholly and correctly.
In patients fed enterally, it is recommended to give at least 30 ml of water before and after administering nutritional products and drugs to prevent blockage of the tube (Blumenstein, Shastri, & Stein, 2014). It was observed that the most frequently and correctly (99.2%) applied intervention during observation was giving water after administering medication and enteral nutrition products through the PEG tube. The finding obtained from this research shows that the sample group (caregivers) took measures to prevent tube occlusion. It was reported by Lim et al. (2018) that individuals who care for adult patients who are fed enterally at home experience tube obstruction (20%) after administration of medication. Alivizatos, Gavala, Alexopoulos, Apostolopoulos, and Bajrucevic (2012) found that 45.1% of individuals caring for patients receiving enteral nutrition at home encountered the problem of tube obstruction. The research reported that 90% of caregivers caring for patients fed with a PEG tube wash the PEG tube with water after drug administration and 95.5% wash the tube with water after the nutritional product is finished (Sezer, 2018). Demirci et al. (2015) determined that PEG tube obstruction developed in 4.9% of the patients. The occlusion rate of the PEG tube was reported to be 1.8% (Coskun & Derya, 2019).
Health education is the practice carried out to enable individuals and society to adopt and implement the measures to be taken for a healthy lifestyle, protection and development of health, and the effective use of health services provided (World Health Organization, 1983). In this study, comparison revealed an association between caregivers' knowledge of and practices about enteral nutrition caring for patients fed through a PEG tube. The correlation coefficients suggest that caregivers' PEG practices can be improved as the caregivers' level of knowledge increases. Pars and Soyer (2020) found that training given at regular intervals increased knowledge level. Ozden et al. (2016) reported that caregivers were trained in PEG tube nutrition, possible problems, and solutions, and were supported by home visits. In the research by Sezer (2018), caregivers stated that they did not receive sufficient information about the problems and care related to the PEG tube (Sezer, 2018).
Limitations of the Research
The data collected were valid only for people who cared for patients fed via a PEG tube in the internal medicine facility, the neurology clinic, and the palliative care unit in a training and research hospital. In this study, survey and observation methods were used to obtain the data. In future research, investigation with broader sample groups is suggested. In addition, the long-term issues faced in the home care setting after discharge based on the caregivers' level of expertise and applications for enteral feeding in PEG tube-fed patients should be examined.
Relevance to Clinical Practice
It is recommended that the nutrition nurse and other healthcare team members who provide education about PEG treatment for enteral nutrition, storage of nutritional products, medication applications, PEG tube dressing, and prevention of complications that may arise during feeding with a PEG tube provide more regular training to caregivers of patients fed with a PEG tube. Caregivers need more practical training about procedures such as rotating the PEG tube plate 360[degrees], dressing the PEG tube, checking the tube position, and care of the PEG tube insertion site.
The characteristics of caregivers (age, educational level, and skill level) should be considered during training programs. Training should be replicated at regular intervals for older and poorly educated caregivers. Audiovisual tools such as technology-supported teaching materials and videos for PEG tube feeding applications and tube care for patients and their family postdischarge will improve knowledge and skills.
Conclusion
If PEG tube care and feeding applications are not performed correctly, morbidity and mortality rates associated with complications may increase. Theoretical and practical training is needed to rotate the tube plate 360[degrees], verify the tube's position, and cleanse the insertion site using an antiseptic solution. In addition, elderly caregivers and those with a low education level need more support about enteral nutrition caring for patients fed through a PEG tube.
ACKNOWLEDGMENTS
The authors express gratitude and appreciation to the caregivers who participated in the study.
REFERENCES