The experience of adherence among hemodialysis patients undergoing therapeutic regimen: a qualitative study

Ethical statement

Ethical approval was obtained from the Faculty of Nursing of University of Indonesia (No. 285/UN2.F12.D/HKP.02.04/2018), and the lead researcher attended qualitative research method training prior to the study. Patients who met the inclusion and exclusion criteria were identified by the researchers as eligible for the study. Eligible participants were informed of the objective and procedures of this research, and those who agreed to participate signed the informed consent form. To protect the confidentiality of the patients, patient names have been removed from all data.

Design

This qualitative study uses a phenomenological approach. Data were gathered through in-depth interviews recording the experiences of several HD patients on various issues relating to therapeutic regimen adherence. The research was conducted from October to December 2018. In addition, interdialytic weight gain (IDWG) data were analyzed to check if they support adherence to therapeutic regimen therapy.

Data collection

Sampling was performed using a purposive technique. The study was conducted at the HD unit of two hospitals in Semarang, Central Java, Indonesia by the first author. She is a lecturer in medical surgical nursing with Master’s degree in nursing and specialist of medical surgical nursing focus on caring for patients with HD. Some training had been done in qualitative research methodology. In this study, she reported the findings to the other authors after data collection. The inclusion criteria were: (1) undergoing HD treatment twice a week for a minimum of one year, (2) aged 18 years or older, (3) able to verbally communicate in Indonesian or Javanese, (4) has no cognitive impairment, and (5) willing to participate. Before conducting the research, the researcher and the chairman of the HD unit identified patients who could participate in the study. Subsequently, the researcher explained the study’s objective, benefits, rights, risks, confidentiality, and procedure for participation. Thereafter, the researcher approached the patients and built a trusting relationship, then enquired about their willingness to participate in the study; a total of 10 patients agreed to participate and signed the informed consent form²⁷. None of the patients who were asked to participate in this study refused. We achieved data saturation from these 10 participants and found no new information; thus, no other patients were recruited.

Each participant underwent an in depth semi-structured interview for approximately 30 to 40 minutes in a room within the HD unit, where there were only the researchers and the participant. The interview was conducted using a guide²⁷, which was developed based on the concept of adherence to the therapeutic regimen and consultations with HD experts. The guide included questions relating to the experiences of the participants regarding adherence to the therapeutic regimen, such as scheduled attendance, medication, fluid restriction, diet, and physical activity. This concept was obtained by searching and reviewing references related to compliance of HD patients who were undergoing therapeutic regimens. From this arose questions that need to be asked to explore patients’ experiences and the supporting and inhibiting factors in undergoing therapeutic regimens, including implementing HD, based on the program, medication, fluid restriction, diet, and physical activity. A list of questions was compiled. Before being used in research, this interview guide was reviewed by a clinical expert; a senior nurse who a Master’s degree in nursing and has been working in the hemodialysis unit at a hospital in Central Java. During the review, the expert was asked to provide an assessment and feedback on whether the questions were formulated appropriately. After doing a review, the expert judged that the questions were appropriate. The expert suggested adding questions, “what is the impact or body’s response when the patient could implement the therapy regimen and when they couldn’t”.

The interviews were recorded, with the participants’ consent, to make it easier to transcribe them verbatim. To maintain data security and confidentiality, the audio recordings were coded and stored in locked cabinets and computer files protected with passwords, and not disseminated to unauthorized parties. In addition, the backup copy shall only be maintained for 10 years and used exclusively for research purposes and publication of the results. Field notes were also taken during the interviews. Hence, the data collected in this study included transcripts of in-depth interviews, field notes, and data from medical records relating to IDWG.

Data analysis

Based on the approach of Colaizzi²⁸, manual data analysis was conducted through the following steps: (1) we documented the collected data by creating verbatim transcripts of the in-depth interviews and the field notes. The transcripts were then stored electronically, and a hardcopy was made to facilitate the analysis. (2) We repeatedly read all the transcripts. (3) Three researchers coded the data. We reviewed and analyzed the transcripts, selecting significant statements in connection with the research objectives,which we then highlighted as keywords.These keywords were referred to as initial coding, followed by axial coding. (4) Keywords with similar meanings were classified into categories. Similar categories were then grouped to form themes that fit the research objective (selective coding). (5) The results were elucidated and integrated using a deep and complete narrative description. (6) Finally, the new data that emerged were converted into a narrative description.

Rigor

The robustness of the study findings was based on the following four criteria: credibility, dependability, confirmability, and transferability²⁹. Credibility of the data obtained by the researcher conveys the results of the interviews that were analyzed, in order to verify that the data obtained is in accordance with their submission. In addition, discussions and consultations with experts regarding the categories and themes were conducted. Consultation was conducted with a Professor and lecturer from the Faculty of Nursing, University of Indonesia. She is an expert in a qualitative research methodology, author of books on qualitative research methodology and reseacher with publications in national and international journals. The consultation was about the accuracy of the categories and themes. The state of the themes must be accurate and clear. Dependability was enhanced by thoroughly analyzing data using a structured approach, striving to interpret the results of the study correctly, and involving all researchers in developing the categories and themes. Confirmability was derived by showing the results of the interviews that were made temporarily, then creating themes after consulting with the expert. The researcher also codified the information and then conducted discussions and consultations with the same expert as for credibility. The discussion and consultation was about the coding process. The consultation was conducted after the reseachers made a draft of data analysis that contained the groups of keywords from participant statements, catagories and themes. The expert gave suggestions for rearranging the keyword groups because there were still participant statements that didn’t match with the group. This process was conducted to reach agreement on the categories and themes obtained. Transferability is ensured by performing an external check where the researcher presented the results of the analysis to patients who did not store the results. The researcher asked two other hemodialysis patients who did not participate in this study to read the results of the study and asked for responses about the clarity the results study. Both of these patients stated that they understand the results of the study. They said that their experience of hemodialysis was similar to the patients in this study. The principle of transferability is a form of external validity, which shows that the research results from one study population can be applied to other settings or groups of participants³⁰.

The most difficult period is the beginning of HD

This theme was generated from the responses of seven participants consisting of two categories, namely (1) the reasons given by patients who did not attend HD as scheduled and (2) those who were often hospitalized at the beginning of HD.

Patients were often hospitalized after starting their HD therapy due to their deteriorating physical condition.

Important for HD patients to perform self-care

This theme was generated from the responses of six participants regarding patients’ self-care to perform the HD therapeutic regimen and feel better.

HD patients were also expected to decrease their fluid intake and embrace a good diet.

HD patients usually felt better after performing the HD therapeutic regimen.

Nurses play a critical role in improving adherence to therapeutic regimens

This theme was generated from the responses of all 10 participants regarding the following issues: (1) the patients do not completely understand the therapeutic regimen they need to adhere to, (2) nurses are required to advocate adherence to their patients, and (3) nurses are required to possess high nursing skills. Participants did not adhere to the required medicine intake and understood that fluid and diet restrictions usually influenced their daily fluid and dietary intake.

However, patients who do not adhere to the HD therapeutic regimen or end their sessions before the scheduled time are usually asked by the nurses to sign a consent letter.

In addition, one of the patients stated that nurses should possess high nursing skills, especially for handling patients with difficult vascular accesses:

Decreased ability to do physical activity

This theme was generated from the responses of seven participants relating to the limitations in physical activity and the body’s responses after physical activity, as illustrated by these statements from the participants:

In terms of physical activity, some participants gave the following response:

Supporting and inhibiting factors of adherence to HD therapeutic regimens among HD patients

This theme was generated from the responses of seven participants relating to supporting and inhibiting factors.

Apart from these positive factors, there are also factors that do not support adherence to the therapeutic regimen, such as seasonal weather, cost, and environment.

The most difficult period is at the beginning of an HD program

HD causes major changes in the lives of patients with chronic kidney disease, affecting all areas of their life. However, non-adherence to HD therapy usually results in the deterioration of the patient’s psyche^7,13,14. For most patients, the initial period of undergoing HD is usually the most difficult, since they are in a transitional period and must adapt to changes. However, not all patients are well prepared, and some are unaware of the importance of attending the therapy as scheduled. Some patients even use alternative medication and do not undergo HD despite their kidney disease because they feel healthy. This finding is in line with that of a previous study stating that patients with chronic kidney disease experience a lack of adequate emotional support from nurses during the transitional period of undergoing HD³².

In addition, many patients experience health-related conditions that could cause them to become hospitalized at the commencement of their HD therapy. This may be attributed to their chronic kidney disease, which is usually asymptomatic and detected late. Additionally, some patients with many of the risk factors related to chronic kidney disease are unaware of its complications and how to prevent them; thus, their kidney disease eventually progresses to its end-stage, which involves kidney replacement therapy. Patients who undergo HD for the first time tend to have poor general health with high comorbidities since such conditions are usually reported late³³. Delayed referral from primary care usually limits the choice of dialysis, and inadequate time for preparation can increase the risk of complications associated with the central venous catheters used for dialysis³⁴.

Important for HD patients to perform self-care

HD has the capacity to reduce patients’ complaints, but it cannot cure or enable them to fully recover from the disease despite undergoing HD permanently. As a result, patients face many challenges, changes, and stressful situations, such as fluid restrictions, diet, associated medical conditions, and loss of the normal daily routine that they were previously used to^7,34. Therefore, self-care is needed on the part of patients in order to maintain their quality of life, health, and general welfare. Patients must keep undergoing HD as scheduled, take the medications as prescribed, manage their fluid intake, engage in physical activities, and meet all their nutritional needs. Based on their experiences in this study, patients observe differences in their physical health when they undergo the HD therapeutic regimen. For example, they feel optimally healthy, experience no shortness of breath, and have better psyche when they regulate their fluid consumption. However, they complain of discomforts, such as body aches, shortness of breath, swelling, inability to sleep, and a swollen stomach whenever they fail to do so. This finding is in line with that of a previous study stating that patients have the ability to perform self-care by maintaining their lifestyles, in accordance with that recommended by the HD therapeutic regimen, such as taking medication, restricting fluids, and dieting, among others³⁵.

Nurses play a critical role in improving adherence to therapeutic regimens

Patients are responsible for many aspects of their therapy. For instance, most of the patients in this study restricted their fluid intake without a specific means of measurement, did not make any special modifications to their lifestyle, and ate what was normally available to them.

Patients do not always have a valid and accurate understanding of the amount of medication they should take. For example, average patients consume medication based on their personal knowledge and judgment. Moreover, they often build their understanding according to their beliefs and common sense and they further use this understanding as an alibi to justify what happens to them⁷. However, in practice, patients do not always follow what is recommended. Patients’ education level and ability to understand the information provided as well as the nurses’ methods of delivering the said information are vital factors. This finding is in line with that of a previous study stating that due to time constraints, patients neither receive all the necessary information, nor can they understand the behavioral modifications required since the information is too complicated for them to comprehend³⁴. However, knowledge is a vital tool to empower patients and stabilize their health. Hence, a lack of proper understanding is an obstacle and the information provided by doctors and nurses is crucial to achieve total compliance^7,34,36.

Most of the participants in this study found it difficult to limit their fluid intake mainly because of thirst. This finding is in line with that of a previous study stating that the most prominent theme is the challenge in controlling fluid intake³⁷. This difficulty in restricting fluids causes an increase in IDWG, wherein an increase of<4% is normal, 4%–6% is average, and >6% is hazardous³⁸. In our study, we found that majority of the participants (70%) fell within the average category. An average increase of 4%, 5%, and 6% was exhibited by 4, 3, and 1 participants, respectively. The IDWG should be lower than 4% of dry body weight³⁹. Difficulty in maintaining weight during the HD period is a very common problem among many patients⁷. IDWG is an indicator of excess fluid that needs to be removed during dialysis, and a greater percentage indicates problems in controlling fluid intake^40,41.

Nurses are directly responsible for providing care to patients before, during, and after undergoing HD. AVF cannulation is an important skill that all HD nurses should have. This is essential to patients who have trouble since they have temporary vascular access or small blood vessels. Such patients can experience greater levels of pain, discomfort, and anxiety. This finding is in line with that of a previous study stating that not all nurses show a sufficiently high level of competence, which makes the patients more anxious⁴². Needle insertion error is the main cause of recirculation^43–45. Negative experiences during cannulation contribute to patients’ fear of AVF damage and distrust in the HD staff⁴⁴. The results of other studies show that nurses must have technical skills combined with appropriate experiences, such as the ability to perform venous puncture, as it plays an important role in enhancing patient comfort⁴⁶.

In our study, HD was carried out in accordance with a pre-determined time limit of approximately four to five hours for each procedure. However, there are patients who end their sessions before the allotted time due to medical and non-medical reasons; for example, some patients exhibit severe intra-dialysis complications and thereby discontinue the scheduled HD, while some cite lack of time and transportation. For patients who want to end HD prematurely, nurses usually explain the consequences to them first, and then ask them to sign an informed consent form, stating that they fully understand the consequences of their action and accept all the risks that their discontinuation might ensue. Ultimately, nurses can improve HD effectiveness by adhering to the accurate duration of each session⁴⁵.

Decreased ability to do physical activities

The ability of HD patients to carry out physical activities changes over the course of their treatment. The most noticeable changes are decreased mobility, limitations in performing certain physical activities, shortness of breath, fatigue, and weakness, all of which hinder patients from completing the course of the treatment. There are three main factors that affect physical activity: renal failure, side effects of renal replacement therapy, and worsening of comorbidities. Low physical ability is also caused by uremic intoxication, anemia, mineral and metabolic abnormalities, increased cardiovascular risk combined with high comorbid disease, uremic sarcopenia, decreased muscle strength due to muscle catabolism, and metabolic waste^47–49. Patients experience physical challenges in life, which are reflected by limitations in carrying out certain physical activities. These limitations are caused by low energy and weakness due to restrictions on food and fluid intake, excess fluid, and increase in metabolic waste in the patient's body³⁶.

Supporting and inhibiting factors of adherence to the therapeutic regimens in hemodialysis patients

There are additional factors that influence adherence; some are supporting, while others are inhibiting. Supporting factors usually stem from patients, their families, nurses, and colleagues at work. Inhibiting factors include seasonal weather, cost, and occupation. Supporting factors can motivate individuals to continue the therapeutic regimen as recommended, thereby reducing the risk of hospitalization; therefore, the ability of patients to self-motivate is very important⁵⁰. Meanwhile, their family and friends could counsel and encourage them to undergo the HD therapeutic regimen as recommended. The availability of adequate support could reduce economic costs, and increase patients’ participation, respect, cooperation, hope, trust, welfare, family health, and ultimately, adherence to the therapeutic regimen⁵¹. This finding is in line with that of a previous study stating that support has a positive influence on chronic kidney disease patients through several means that help them cope better, minimize their stress, assist with practical problems (e.g., accessing health services), and improve their psychosocial functions and adherence to therapy⁵².

Nurses also play an important role by ensuring that the patients undergo their therapy programs as recommended. They also accompany patients undergoing HD and are involved in long-term intensive interactions with patients. Additionally, nurses educate and counsel while administering the therapeutic regimen, motivate and convince patients to undergo the program, provide them with emotional support, and participate in monitoring, evaluating, and maintaining long-term communication with them. This finding is in line with that of a previous study stating that nurses play a key role in supporting patients undergoing HD, understanding the patients’ lives, and ensuring that the information provided will help them adapt to the situation, needs, and demands of HD⁷.

Meanwhile, the inhibiting factors are environmental and economic in nature. Environmental factors such as the weather prevent patients from going to the hospital to undergo their HD therapeutic regimen. Indonesia experiences two seasons: dry and wet. In the wet season, flooding makes it difficult to reach the hospital to carry out HD. In the dry season, hot temperatures make it difficult for patients to comply with their fluid restrictions, since they are thirstier than usual and hence, drink more than the prescribed amount. This, in turn, causes weight gain during the HD treatment. Thus, fluid restriction adherence is very difficult in tropical regions⁵³.

In addition, income, cost, and transportation are the major economic inhibiting factors. Patients generally experience a decrease in income since they cannot work. Moreover, those who sell food and beverages for a living find it difficult to undergo HD as the temptation to eat and drink the products they sell is great. Most HD patients in Indonesia receive financial assistance from the BPJS. However, they still must pay for the process in terms of transportation, their food, and for their accompanying family members. Sometimes, they may need to buy medications that are not covered by the BPJS. The results of one study showed that the cost of transportation to access HD service facilities is the highest cost factor for patients with health insurance⁵⁴. This is different from the United States where transportation and transit services are provided by the health system for disabled people, including patients with end-stage kidney disease⁵⁵.

In this study, the minor theme is the importance of educating patients regarding adherence to the HD therapeutic regimen. The participants are sufficiently educated, but poor adherence to the therapeutic regimen in HD patients is still consistently reported. Therefore, nurses, as one of the key health workers with the responsibility of educating patients, should promote patient adherence to the HD therapeutic regimen.

Underlying data

Zenodo: Underlying data the qualitative study: The experience of adherence among hemodialysis patients undergoing therapeutic regimen: a qualitative study. http://doi.org/10.5281/zenodo.4301296³¹.

This project contains the following underlying data:

Extended data

Zenodo: Extended data the qualitative study: The experience of adherence among hemodialysis patients undergoing therapeutic regimen: a qualitative study. http://doi.org/10.5281/zenodo.4301338²⁷.

This project contains the following extended data:

Reporting guidelines

Zenodo: COREQ checklist for “The experience of adherence among hemodialysis patients undergoing therapeutic regimen: a qualitative study”. http://doi.org/10.5281/zenodo.4301114⁵⁶.

Data are available under the terms of the Creative Commons Attribution 4.0 International (CC-BY 4.0).