Caregiver Burden in Caregivers of Patients Receiving Hemodialysis: A Qualitative Study

Background Living with End Stage Kidney Disease and hemodialysis place too much burden on patients and their caregivers. The concept of caregiver burden describes a set of diverse caregiver experiences in providing care and requires a complex and multifaceted denition. Limited studies have looked at caregivers of patients receiving hemodialysis and the concept of caregiver burden from their perspective. This study aims to develop the concept of caregiver burden among family caregivers of patients receiving hemodialysis. This study was conducted using directed qualitative content analysis method. Twenty one family caregivers, patients, dialysis nurses, physicians, and social workers in teaching hospitals of Tehran and the Iranian Kidney Foundation, Tehran, Iran were enrolled using maximum variation purposive sampling method. Sampling was continued until data saturation was reached. The data collection method was in-depth and semi-structured interviews. In order to analyze the data, the directed qualitative content analysis method was conducted based on the method proposed by Elo and Kyngas which was modied by Assaroudi et al.

resources (3). The complications in caring for a patient receiving hemodialysis aggravate depression and reduce the quality of life of the caregiver (4). The burden on the caregiver directly affects the quality of care provided by them and may lead to inadequate care or even the abandonment of patient (5).
Numerous studies have been conducted on issues related to caregivers of Alzheimer's patients; however, little is known about other diseases (6). Admittedly, caregivers and families of patients receiving hemodialysis have not been well understood, and what has been in the spotlight was primarily the patient receiving hemodialysis, not his or her caregiver. Limited studies have looked at the personal lives of caregivers of these patients (4). In one qualitative study, caregivers of patients receiving hemodialysis suffered from burden which formed four categories: care challenge, psychological vulnerabilities, the chronic nature of care and care in the shade. These categories had formed one theme: progressive exhaustion (7). In another qualitative study, three themes emerged from the experience of caregivers of these patients: constant struggle to learn, effort and adherence to the divine thread, and in disease's captivity (8). Demographic changes and therapeutic developments in chronic disorders may soon lead to an increase in the importance of informal care (1). It is also estimated that the total number of people with ESKD receiving renal replacement therapy will increase (9). Therefore, it is necessary to identify the concept of caregiver burden and its dimensions, and consequently, to make plans to determine this burden and implement measures to reduce it. Accordingly, in this study, based on the de nition provided and the dimensions of caregiving burden in the 'Structural Model of the Caregiver Burden Model' proposed by Chou (10,11), the concept of caregiver burden was developed. In this model, caregiver burden is considered as the caregiver's subjective perception of the burden increase in one of the physical, psychological, social, or nancial levels during the care process.

Aim
The objective of this study was developing the concept of caregiver burden among family caregivers of patients receiving hemodialysis.

Approach
This study was conducted using a directed qualitative content analysis (DQCA) method. In case there is a previous theory or research ndings about a phenomenon that are either incomplete or more research leads to providing additional descriptions about them, the researcher chooses the DQCA method (12).
Since several studies had already been done on the concept of caregiver burden and speci cally based on the de nition and dimensions of caregiver burden in the Model proposed by Chou (10,11), this method was used. The research setting was the waiting room in the hemodialysis wards of Tehran teaching hospitals as well as the Iranian Kidney Foundation, Iran.
Participants Participants included family caregivers, patients, dialysis nurses, physicians, and social workers in teaching hospitals of Tehran and the Iranian Kidney Foundation. Inclusion criteria for family caregivers included the no known mental illness, the ability to speak Persian, and responsibility for direct patient care. Patients with ESKD receiving maintenance hemodialysis who were physically and mentally able to participate in the study and were over 18 years of age were also. Nurses must have at least one year of work experience in the hemodialysis unit. Social workers and specialists who had experience in working with patients receiving hemodialysis were also included.

Data collection method
In this study, a maximum variation purposive sampling method was used (maximum diversity in terms of gender, age, level of education, treatment duration, and socioeconomic class in the participants). Sampling was continued until data saturation was reached. The data collection method was semistructured interviews using a combination of the questions derived from the model and open-ended questions. Because the data collection method was semi-structured interview, we don't have questionnaire in this study. An interview guide was prepared and tested before the interview (see additional le 1). The interviews were recorded with the participants' permission. Before starting the interview, the purpose of study was explained. Participants' demographic characteristics were recorded.
No interview was repeated, and no participant withdrew from the interview. A total of 21 interviews were conducted with 15 family caregivers, two patients, two dialysis nurses, a physician, and a social worker.

Data analysis
The DQCA method was conducted based on Elo and Kyngas (13) method which was modi ed by Assarroudi et al. (14), using the Unconstrained Matrix and MAXQDA software version 10 as follows:

Phase 1. Preparation
One of the researchers tried to acquire the necessary general skills. The interview guide was developed, and a pilot interview was conducted and analyzed by the research team. The interview transcriptions were considered as an analysis unit, and an attempt was made to become immersed in the data by repeatedly reviewing the interview transcriptions.

Phase 2 -Organizing
The formative categorization matrix was extracted. The theoretical de nition of the main categories was determined. Coding rules were compiled. An initial pilot interview was coded, and the coding accuracy was checked. Afterward, the main analysis was conducted, the meaning units were extracted and summarized, and the primary codes were assigned to them. Subcategories and generic categorizations were formed. Subsequently, a relation was formed between the generic categories and the main categories.

Phase 3: Reporting
Include the report of all stages of DQCA and ndings of study.

Trustworthiness
To ensure the rigor of the study, the criteria of Credibility, Dependability, Transferability, and Con rmability (15) and Elo et al.'s checklist (16) were used and were presented below and in table 1 respectively (see additional le 2). In accordance with the purpose of directed content analysis, semi-structured interviews with observation and eld notes were used.
Since the researchers' goal was to develop a caregiver burden model, a semi-structured interview seems appropriate.
A combination of descriptive and semi-structured questions was used in the interview.
Two pilot interviews were conducted. By reviewing the audio le of the interviews and their transcriptions and answering questions such as "Have I controlled the interview?" "Have I asked very limited questions with closed-ended answers?" An attempt was made to evaluate the role of the researcher in the interview and to reach self-awareness and control in the next main interviews.
The pre-test of the categorization matrix was performed in a pilot study.
Sampling method Maximum variation purposive sampling method was selected. The target characteristics and inclusion criteria were described. Details about the characteristics of research units were described in Tables in the research results. Sampling was done with different economic, social, and educational levels. Moreover, caregivers with different family relationships (partner, child, sister) of both sexes, with a separate or shared living place with the patient were also studied.
The main caregivers of hemodialysis patients, patients, and professional caregivers who were interested in relating issues and could re ect their experiences and mindsets well were used.
Speci c inclusion criteria were set for family caregivers, professional caregivers, and patients.
An attempt was made to select suitable samples for the research by observing the compliance of the research samples with the inclusion criteria and the criteria related to the informant participant.
The sampling process continued until data saturation was reached. Furthermore, after transcription of the second interview, the process of data analysis began and continued simultaneously with sampling.
Selecting the unit of analysis The unit of analysis was the transcript of each interview.

Organizing Categorization and abstraction
The procedure for forming codes from meaning units, subcategories, and categories were described in the Tables.
By summarizing and merging similar categories and subcategories, an attempt was made to reduce the number of concepts.
Efforts were made to ensure that there was no overlap between categories.

Interpretation
The transcripts of all the interviews and the codes extracted from them were observed by the research team to minimize personal interpretation of the data.
By repeatedly reviewing the interview transcripts and the extracted codes and subcategories, an attempt was made to obtain a correct interpretation of the data.
The techniques of member check and peer check were used.
Representativeness The process of coding, the formation of subcategories, and categories were frequently reviewed and its process was under the supervision of the research team.

Reporting
Reporting results An attempt was made to report the process of forming the main categories from generic categories by compiling Tables.
Attempts were made to use participants' quotes in accordance with the subcategories and main categories.
Reporting the process of analysis An attempt was made to fully describe the process of data analysis.
The accuracy and rigor of the data in this study were evaluated based on two sets of criteria.
Credibility: the codes of one interview were handed in to one of the participant and she veri ed codes (member check). Moreover, the codes of one interview were provided to a nursing Ph.D. student, and the accuracy of the coding was investigated (peer check). The results were also presented to the research team, and the items requiring modi cation were edited.
Dependability: Adequate explanation of the interview process was provided to the participants. In addition, detailed documentation of the data collection procedure was prepared to enable the external audit to assess it. All participants were asked the same question. Lastly, in the research report, participants' statements were quoted extensively.
Transferability: Attempts were made to providing an accurate report of the study method, ndings and quotations.
Transferability: While using the eld notes, the researcher's perception of the participant's speech was also restated to them for con rmation of its accuracy.

Results
The concept of caregiver burden in family caregivers of patients receiving hemodialysis and its dimensions based on the dimensions of Chou's Model were approved and developed. From 21 participants, 15 were main caregivers, whose the characteristics have been presented in Table 2. In the Chou's Model (11), caregiver burden includes physical, emotional, nancial, and social burdens. In addition to con rming these four dimensions, ndings added another dimension titled a time-dependent burden. The ndings are described below.

Category 1. Financial burden
Family caregivers considered nancial issues as one of the factors causing burden as a result of caring for their patients. This category included four subcategories as below: High additional costs In the process of caring for their patients, family caregivers had faced multiple high costs such as treating comorbid problems. The process of caring for a patient receiving hemodialysis and its complexities cause psychological, emotional, and spiritual burden on the caregiver. This category included subcategories as below: Concerns about vascular access Continuing the hemodialysis and even the patient survival depends on the proper vascular access. Consequently, one of the worries of the caregivers was the malfunction of vascular access.
"... The only thing for these patients to survive is the right operation of the stula and catheter. Many times we see both the patient and the caregiver are very worried that they may stop working ..." (P19) Depression and anxiety about the patient's threatening physical condition The complexity of caring could cause symptoms of stress and depression in caregivers. Complications of dialysis and the illness cause instability in the patient's condition. These conditions cause panic and anxiety for the caregiver. Concerns about distance and transportation to the hospital The caregiver was obliged to transport the patient to hemodialysis center, and the concern about nding the vehicle had caused them anxiety and stress. The caregiver had witnessed how the patient was suffering, without being able to help him/her. This had caused an emotional burden and a feeling of despair and helplessness. In addition, the continuous and lifelong process of care had resulted in the caregiver's mental fatigue.

Sleep disorders
Caregivers had experienced sleep disorders due to the patient's particular condition and needs.
"... At night, because he can't sleep, he expects us not to sleep either. He just calls us. He wants to see if we're awake or not…" (P1) A threat to sexual health Sexual dysfunction of patient puts a burden on the partner, who is also the primary caregiver of the patient. On the other hand, the caregivers' sexual health is also at risk due to the types of burdens they experience.
"... I've become a cold person because of the burdens on me. I don't have that feeling anymore..."(P8) The patient's lack of understanding of limitations ESKD and hemodialysis are accompanied by many limitations and deprivations for the patient. One of the issues that caregivers struggled with was the patient's unwillingness to accept these restrictions.
"... Ever since he gets sick, he likes to go out. He was the one who didn't usually go out. Now, he suggests the places that aren't possible to go at all, because they have stairs. For example, he likes to wander in stores…." (P9) The burden of the patient not adhering to the diet One of the challenges for caregivers was patients' non-adherence. The hemodialysis program determined the patient and caregiver's life plan. As a result, all issues had to be coordinated with that program, which was a di cult task and could be a source of the burden on the caregiver.
"... If we want to plan any program, we should coordinate it with our mother's dialysis schedule ..." (P1)

Feeling limited
The issues and complexities of care had caused a feeling of limitation in caregivers' minds. "... The hospital also depresses. You sit here, just hear crying, screaming, and shouting. Well, it has a great effect on your spirit. This is the hospital environment even you have nothing to do except this; it affects your spirits..." (P7)

Distrust of dialysis machines
According to caregivers, most of the hemodialysis machines were out of date and did not operate properly. This had caused caregivers to distrust the e cacy of the dialysis.
"…Most of the patients and caregivers have knowledge about treatment; they complain that they feel hemodialysis is not as effective for them as it's mentioned in the sources ... the quality of dialysis is their concern…." (P20)

Category 4: Social burden
Caring for a patient receiving hemodialysis had placed various social burdens on the caregiver. Social burden in this study included generic categories as below: A threat to social life The caregiver was deprived of social activities and presence in the community and friends' company: "... Well, we can't travel at all during the holidays or busy days of the year. Because we are worried that we won't nd an empty dialysis bed ..." (P15) A Threat to job status The need to accompany the patient to dialysis sessions had led the caregiver to be absent from work, which in many cases had led them to leave the job, lose a job, or retire early. "... The problem is that his family doesn't support him at all ..." (P15)

Stigma
The caregiver had felt that hemodialysis was considered as a stigma and label by others.
"... You know, I'm single. Well, I'm not so sure yet, but I think a man who wants to marry me, or his family, even if they don't know what dialysis is, they may think they're getting a girl from a dialysis family, or I may be like this in the future..." (P3) Not being noticed and being abused by others Caregivers had felt that they were abused by others.
"... and I'm, a kind of, being abused. Others are taking advantage of me being single because I am supporting her ..." (P5)

Challenges with other caregivers
The presence of several caregivers and the complexity of the patient's condition had caused con ict between caregivers.
"... Let me tell you that, my mother and what happens to her is something, and convincing my brothers and family is something else ..." (P5) The burden of other's expectations The caregiver was exposed to the expectations of others, which in turn had created an added burden.
"... My children expect me, too. For example, they take their children here and ask me to take care of them ...." (P18) Dissatisfaction with the authorities Caregivers had experienced burden because they had not received adequate support.
"...You know, the government must provide an additional budget for patients with speci c diseases, something like a support package or something that helps their medical expenses..."(P3) The burden of not being understood by the medical system Caregivers believed that the healthcare team did not understand them. Underlying and associated diseases: aggravating the situation ESKD in most patients is mainly secondary to underlying diseases such as diabetes and hypertension. In addition, due to the fact that most of patients receiving hemodialysis were elderly, the underlying diseases were more common in them. As a result, in addition to managing ESKD problems, family caregivers had faced problems of underlying comorbidities.
"...Well, they have many more problems. Four days a week, she is on dialysis; the other two days, it's her heart disease, her anemia, her blood sugar and diabetes, her blood pressure, her triglyceride. We have all these problems ..." (P12) Vascular access: problematic and time-consuming Vascular access in patients receiving hemodialysis is accompanied by speci c complications. The vascular access placement process was time-consuming. The need for hospitalization, multiple physician visits, and diagnostic tests had placed a burden on the caregiver.
"...At rst, he was with a stula, but it didn't work. There was no blood ow; his hand turned black. Then, they placed it on his chest; it became infected. They put it on the other side; it infected too. We've taken him to the hospital so many times..." (P11).
Involvement in a variety of treatments and associated problems ESKD and dialysis treatment had caused complications, which had led to frequent hospitalization, the need for multiple and periodic visits by a physician, and the necessity of performing multiple diagnostic tests, whose responsibility had been placed on the caregiver.
"... My husband gets hospitalized a lot because of his problem. Just two months ago, he was hospitalized because of a cold ..." (P15).

Discussion
This study was carried out with the aim of developing the concept of caregiver burden in family caregivers of patients receiving hemodialysis, and one main category, i.e., the time-dependent burden was added to the previous four categories in the Chou's model (10,11).
One of the issues raised in the present study was job-related issues. The caregiver's employment status was threatened due to his/her involvement in care. This issue had similarly been raised by caregivers in the study by Salehi Tali et al. (7). The need to attend the hemodialysis sessions with the patient, the need to hospitalize the patient, and the lack of supportive labor laws could cause the caregiver's career to be at risk.
Concern about the future was one of the factors creating the caregiver burden in this study. Family caregivers in the study by Rabiee et al. reported uncertainty about the future (8). The dependence of the patient's life on Renal Replacement Therapies (RRT) and the lifelong need for them were among the factors of concern about the future in these caregivers. One of the concerns of caregivers of patients with multiple sclerosis was, similarly, a concern about the future (17). It seems that the chronic and debilitating nature of multiple sclerosis can create similar concerns in caregivers.
One of the issues that caregivers addressed in the present study was sexual problems. In another study, one of the issues raised by caregivers of patients receiving hemodialysis was sexual function challenges, too (7). Patients with ESKD suffer from sexual dysfunction, which causes problems for their partners, who are often their primary caregivers. On the other hand, various psychological burdens on the caregiver might also affect their sexual desire. In the present study, one of the caregivers' issues was the di culty of disease management. The dimensions of the patient's issues, which the caregiver was required to deal with, were so extensive. The results of the study by Goodarzi et al., similarly, led to the extraction of the main theme titled undertaking hard caring (19), which is parallel to the present study. The loneliness of the caregiver in providing care, which was one of the extracted subcategories in the present study, and the lack of a supportive social network, could make disease management more challenging.
Half of the caregivers of patients receiving hemodialysis studied by Intas et al. suffered from sleep disorders (20), as in the present study, one of the factors causing a burden on the caregivers was sleep disorders. Frequent awakenings and sleep disturbance of the patient due to the complications of the disease may cause sleep disturbance in the caregiver.
In the present study, caregivers experienced constant involvement in care that was a threat to their private life. The results of a study by (21) showed that partners caring for stroke patients had similarly experienced. In both hemodialysis and stroke patients, spending too much time providing care, multiple care tasks, and patient needs lead to constant caregiver involvement. Caregivers of dialysis patients in another study had; likewise, been limited in their lives due to the challenging and tough conditions they had endured (8).
One of the caregivers' psychological problems in the present study was depression and anxiety. The results of a systematic review in caregivers of cancer patients reported the high prevalence of depression and anxiety in them (22) that is consistent with our study. As a result of providing care, caregivers experience psychiatric problems (11). Studies have shown that caregivers' mental state is more affected than their physical condition (23).
In this study, an attempt was made to investigate the different groups of family caregivers by choosing the maximum variation sampling method. However, due to the focus of the study in Tehran, the capital of Iran, the concerns of caregivers living in small towns or villages might have been neglected.

Conclusions
The caregiver burden experienced by caregivers of patients receiving hemodialysis has physical, psychological, emotional, spiritual, nancial, social, and time-dependent dimensions. On the one hand, caregivers suffer from self-care negligence, and on the other hand, the healthcare team does not provide adequate support for them, they are abandoned concerning care issues and experience nancial and social burden, and as a result of providing care, they suffer from anxiety and depression. Consequently, caregivers, whose performances assure the patient's survival, are at a high level of vulnerability. The ndings can be bene cial to identify the issues of caregivers of patients receiving hemodialysis and provide speci c tools for measuring caregiver burden and to develop supportive and rehabilitation programs planned by nurses and social workers which can help to improve the condition of family caregivers. Availability of data and materials: The datasets used and analyzed during the current study are available from the corresponding author on reasonable request.
Competing interests: The authors declare that they have no competing interests.
Funding: This study was supported by Shahid Beheshti University of Medical Sciences. The funder had no role in the design and writing the manuscript and will have not in data collection and analysis of data.
Authors' contributions: SSH, MH, AE and HAM led the conceptualization and design of the study. SSH collected data and SSH, MH, AE analyzed data. MH, AE and HAM substantively revised the study. SSH wrote the rst draft and MH, AE and HAM critically reviewed it and provided comments to improve the manuscript. SSH, MH, AE and HAM read and approved the nal manuscript. SSH, MH, AE and HAM have agreed both to be personally accountable for the author's own contributions and to ensure that questions related to the accuracy or integrity of any part of the work, even ones in which the author was not personally involved, are appropriately investigated, resolved, and the resolution documented in the literature. All authors have read and approved the manuscript.