Remember me
Abstract
Assessing and providing interventions to improve the comfort status of the patients’ needs to be a priority of nursing practice and further research. We did this study to explore the living experiences with maintenance HD among these patients. This qualitative study was conducted using a conventional content analysis approach on 12 HD patients from February 10, 2019 to July 30, 2019. The data were collected through in-depth and semi-structured interviews and were analyzed using Grenham and Landman approach. The main theme was “dialysis therapies with dual face." Three main categories were included: “Dual mood by dialysis,” “Dual feelings with dialysis, ” and “Relying on the family and health care workers.” The results showed that patients’ dependence on HD was accompanied by both good and bad moods and created dual emotions both positive and negative. Influenced by these feelings, these patients had shown a variety of reactions such as trying to adjust to life on HD, relying on supports and beliefs. In this study, a dual face was seen in HD in the eyes of these patients. Therefore, “dual face HD therapy” was identified as the essence of the experiences of HD patients. Health-care providers should try to eliminate the bad and unpleasant face of HD.
Introduction 
Today, chronic kidney disease (CKD) is one of the major health challenges.[1] The global prevalence of CKD is reported as 13.4%[2] and in Iran has been reported to be 15.4%.[3] More than two million people worldwide use renal replacement therapies (RRT) [kidney transplant, hemodialysis (HD), and peritoneal dialysis], and the most common type of RRT, in more than 90% of patients, is HD[4],[5] In Iran, according to the latest statistics in 2018, of the 84,000 patients with end-stage kidney disease, more than 82,000 (89%) are undergoing HD.[6]
HD, while saving millions of lives is associated with various physical (vascular access complications, cardiac complications, gastrointestinal bleeding, cancer, bone metabolism disorder, ineffective dialysis, skin problems, anemia, loss of appetite, muscle cramps, and hypertension), and mental complications (sleep disorder, depression, fatigue, quality of life disorder, and anxiety).[7],[8],[9],[10],[11],[12] Most patients undergoing HD have a sedentary lifestyle and have a significantly lower level of physical activity than healthy individuals.13 Previous studies have shown that these factors decrease their life satisfaction.[14],[15],[16]
Describing the experience of patients with chronic renal failure undergoing HD leads to a better understanding of the meaning of suffering from stress and its various consequences from the perspective of these patients. This helps the treatment team in finding ways that will lead to understanding their needs, problems and improving their care, and encourages nurses to educate and support these patients more effectively by identifying the factors that influence this experience. Nursing interventions are also aimed at promoting or maintaining health at the individual, family, and organizational levels.[14] The content analysis approach is a way of identifying and describing the aspects of a concept based on the phenomenon occurrence context.[17] Qualitative content analysis allows researchers to interpret the data originality and facts subjectively and scientifically. The aim of this content analysis study is to offer a knowledge of the experience related to a specific problem that provides a deeper understanding of the phenomenon under study.[18]
A qualitative study will be one of the most appropriate methods for better and more comprehensive understanding of the patients’ social and cultural experiences and explain how the patients respond to HD. Given the scant evidence available in the published literature, this study aimed to clarify the live experiences of HD patients.
Materials and Methods Design
This qualitative study was conducted using the conventional content analysis approach which provided by Hsieh.[17] The conventional approach of content analysis helps to deepen understanding of the manifest and latent experiences of individuals in a particular context where there are limited theories.[17]
Participants and setting
This study was conducted on 12 patients undergoing the maintenance HD who were on dialysis in the teaching hospital of Zabol University of Medical Sciences (Imam Khomeini Hospital) in southeast Iran, from February 10, 2019, to July 30, 2019. Patients who were on HD for at least six months, aged over 18 years, with speaking ability, and willingness to participate were included. Patients with acute renal failure who did not wish to participate in the study were excluded from the study. The Consolidated criteria for reporting qualitative research (COREQ) checklist was used for the study.[19] Participants were selected by purposeful sampling method.
Data collection
Data collection was done referring to the dialysis unit by coordination and the permission of them. At first, the aim of the research was explained to them and then the sampling was continued until data saturation. The criterion for achieving data saturation was the lack of access to new concepts and codes in the subsequent calculations. Data were collected through interviews, filed notes, and hand notes. Individual face-to-face semi-structured in-depth interviews were conducted using open-ended questions in the waiting room of the HD ward. Interviews were conducted by the first author (HM) at a time when patients were comfortable. Interviews were tape recorded by digital voice recorder (Samsung digital voice recorder). The duration of each interview was 45–60 min depending on the condition of the participants in one or two sessions. The following primary questions used as an interview guide:
Can you talk about your experiences after undergoing HD?What has changed in your life after HD?What challenges have you faced undergoing HD?Data analysis
Data were analyzed simultaneously and continuously with data collection using Graneheim and Lundman approach.[20] All interviews were recorded, transcribed verbatim, reviewed, coded, and immediately analyzed by the researcher. At the first stage, the transcript of each interview was read carefully several times to general understanding of text, in the next stage according to the selected approach meaning units and related codes were identified. In the next stage, through constant comparison of differences and similarities between codes, they were classified into categories and subcategories. Finally, after examining the relationship between the categories and subcategories, the main theme was emerged.[20] The Maxqda version 12 was used for data management.
Rigor
Guba and Lincoln’s four trustworthiness criteria (credibility, transferability, dependability, and conformability) were used to ensure rigor. Credibility was increased by member check (the transcript of interviews was given to participants to validate the results and verify their concordance with their statements, and corrections were made in some cases) and peer check, long-term interviews (45–60 min), variation in selected participants based on demographic characteristics (age, gender, history of HD, marital status, and commodities). Transferability was checked through meetings with a group of HD patients who had not participated in the present study and providing a rich description of all stages of the study (data collection and data analysis process) to help the readers for better using the study results in their context. For checking data dependability, two related experts in hemodialysis who were not part of the study team were asked to check the transcript of interviews. Conformability was verified by documenting all stages of the study on regular basis.[21]
Ethical approval
This study was approved by the Ethics Committee of Zabol University of Medical Sciences (Ethic code: IR.ZBMU.REC.1397. 168) in Zabol, Iran. Permission letter to access the study setting was obtained from research section of Zabol University of Medical Sciences. Before participant’s enrollment, the study’s full details were explained to the participants. If they were interested in participation, written informed consent was obtained.
Results Demographics
Twelve HD patients participated. The mean age of participants was 54 years with an age range from 25 to 65 years. The most of participants were male (59%), employed outside home (n = 7, 58%), married (n = 9, 76%), and had diploma education (n = 5, 42%). The demographic characteristics of participants are presented in [Table 1].
Themes
The main extracted theme was “dialysis therapies with dual face.” Three main categories were included: “Dual mood by dialysis,” “Dual feelings with dialysis,” and “Rely on the family and health care workers” [Figure 1].
Figure 1: The main theme, main category, and subcategories of analyzed data.1. Dual mood by dialysis
HD patients’ experiences showed that HD has had both bad and good statuses for them.
1.1 Good mood of hemodialysis patients
The experiences of HD patients showed that many of them have had a good mood after HD since they felt a decreased internal body pressure, increased physical and movement power, decreased physical problems, good mood, and felt a sense of hope and improvement. Even their view toward life has been changed especially since they felt that have returned to the life. They were fully satisfied and owe their good mood to HD and believed that it can be a good alternative for kidney transplantation.
“I owe my now good mood to HD” (A 52-year-old man with five-year HD experience).
“I appreciate who invented the HD advice. It really made us a better mood” (A 26-year-old man with four years of HD experience).
1.2 Bad mood by hemodialysis
The experiences showed that some patients got worse after HD due to different problems such as mental involvements, conflict with fears, conflict with complications, conflict with concerns, and being involved with limitations.
1.2.1. Mental involvements
The experiences showed that the acceptance of HD was difficult to the patients, so that initially they reacted with shock, cry, and denial. Some of them also resisted against it. They felt that HD has limited their freedom, disturbed their relationship with family members and spouses, and therefore that they felt isolated. They had a feel of family and spouse rejection and a ruined lovely relationship. They had a feel of loneliness. Some of the mothers even have founded their maternal sense as a suppressed sense. They felt hopeless, ashamed, unhappy, and depressed, and also felt that all their desires and goals in life were lost, ignored their appearance, and constantly questioned about why they have been dependent on dialysis and so were suffering much mental pressure. Especially the pity of some people around them was too annoying.
“I feel because I got sick I have no previous value for my family. Someone who gets sick will be rejected from the family” (A 35-year-old man with two years of dialysis experience).
1.2.2. Conflict with fears
The experiences of dialysis patients showed that some of these patients were afraid in different ways due to dialysis. Some had old fears of dialysis, but others had fear of dialysis mechanism by seeing their counterparts and they had become too preoccupied the night before primary dialysis. Fear of being lonely after being rejected by family and spouse, fear of getting sick in the community, and fear of death were other fears of these patients.
“I’m so scared of my husband thinking about why he got involved with a sick and HD dependent wife” (A 32-year-old woman with two years of dialysis experience).
1.2.3. Conflict with complications
The experiences of some dialysis patients showed that dialysis had many complications, with a majority of patients suffering from weakness, numbness, insomnia, headache, nausea, dizziness, anemia, and heart problems. They had experienced severe pain in the needle entry area and had body aches, heat intolerance, and tremor in the early stages of dialysis, sometimes even decided to commit suicide due to severe pain. They said that HD and exposure to its complications have made them unable to perform personal tasks and somehow made them feel disabled.
“I am now weak after dialysis, falling in the house, short of breath and falling asleep, and most of the time I am like this” (A 56-year-old man with seven years of dialysis experience).
1.2.4 Conflict with concerns
The experiences of HD patients show their involvement with a variety of individual and family concerns.
1.2.4.1. Individual concerns
HD patients were suffering numerous individual concerns, such as mental involvement due to painful needle entry and dialysis disabilities, impaired work process due to repeated dialysis sessions, lack of work on scheduled dialysis days, anxiety of not being able to afford the costs of medical treatments and transportation, and facing economic problems following dialysis, the cost of living on dialysis, the difficult conditions of commuting to the dialysis center, being forced to refer to the dialysis center frequently, not being able to afford kidney transplant costs, uncertainty of transplant outcome, difficulties after kidney transplantation, and concerns about malfunction of the dialysis device.
“The facilities are weak in this center and we are always worry about dialysis device
malfunction and not being able to do dialysis, what we should do in water or electricity outage during dialysis” (A 54-year-old man with four years of dialysis experience).
1.2.4.2. Family concerns
Dialysis affects the patients’ family life and they will suffer many family concerns including: spouse impatience following being aware of their spouse’s dialysis, family disintegration, losing spouse and the negative impact of the illness on spouse and family morale, concerns about decreased verbal communication and patient intimacy with family, children’s future and their fatigue from repeated dialysis, concerns about treatment costs, imposing excessive work pressure on the family and fatigue, illness and distress of family member over existing conditions, imposing high medical costs on the family, and failure to cope with dialysis, mental involvement of family members, wasting family members time accompanying the patient during dialysis and disrupting family life plans in this regard, concerns about inability to play their role in the family, inappropriate behavior of family members and disregard for their views, concerns about spouse indifference to their illness, and wishes of wife for having a healthy partner.
“My spouse is under much difficulty due to my dialysis for example he should take a sick wife 3 times a week to dialysis center. It is so difficult” (A 32 woman with two years old of dialysis experience).
1.2.5. Being involved with limitations
The experiences showed that dialysis has made a lot of limitations for them including social and family limits, limited living, day activities, family loaning, limitations in family nutrition, trips, entertainment, and limitation in choosing dialysis shift.
“I can’t go to the trip and visit my family in another city since I get dialysis. I think that my life is as like as a jail and I'm spending all my life day and hours on the bed" (A 31-year-old woman with two years of dialysis experience”.
2. Dual feelings with dialysis
Dialysis patients have had dual feelings. The feelings were in a positive and negative range.
2.1. Positive attitude toward dialysis
In some patients, dialysis has made positive sense so that they know it as a life factor to continue living and having the golden opportunity to be with family. They felt better with dialysis and had an increased life expectancy, and found it as a lovely action, a kind of entertainment, and a part of living so that they felt the life without dialysis as equal as death.
“I do like dialysis because it makes me a better sense of my body and can catch the power I cannot have. I'm happy while coming to dialysis center and I love it because it rescues me from bad mood” (A 32-year-old woman with two years of dialysis experience).
2.2. Negative attitude toward dialysis
Some patients declared that dialysis has created a negative sense in them. Including feelings of nervousness during dialysis, feelings of divine punishment with dialysis, feelings of lack of freedom and imprisonment with dialysis, feelings of artificial life with dialysis, feeling of tired of frequent dialysis, feeling of desire death to get rid of the hardships of living with dialysis, the feeling of wasting time on frequent dialysis visits, the discomfort of frequent dialysis, the dislike of dialysis, and the difficulty of dialysis.
“I dislike dialysis it was a catastrophe. Accepting it is difficult to me. I dislike the time to go to dialysis” (A 31-years old woman with two years of dialysis experience).
3. Reactions to hemodialysis
The experiences of dialysis patients show that they show multiple reactions as trying to adjust to dialysis, relying on family and care supports and beliefs in facing with the conditions following dialysis.
3.1. Efforts to cope with dialysis
Some patients’ experiences showed their efforts to adapt to dialysis, including, efforts to partially adapt to dialysis by doing as much housework as possible, scheduling dialysis according to daily tasks, replacing phone calls instead of visiting relatives, adjusting to dialysis hoping to live with the family, planning for social interactions in nondialysis days, planning living affairs based on the dialysis days, adapting future plans with the current abilities regarding dialysis, the decision to cope with the condition of the disease by returning to the previous job, the struggle for independence in dialysis, trying to cope with the dialysis circumstances, body adjustment with dialysis, accept the illness and dialysis condition by the patient.
“Now I’m adjusted to dialysis, I do my own work as much as I can, my kids expect me to cook as a mom, sweep home, and serve food while coming home from school or university. I’m also trying my best to do my homework with dialysis” (A 35-year-old woman with two years of dialysis experience).
3.2 Reliance on the family and health-care workers
The experiences of HD patients showed their reliance on supportive resources including family members and the care team.
3.2.1 Reliance on family supports
Family supports included: support of the patient’s brother, financial support of family and relatives to transplant, sister’s help to maintain patients’ mood, morale support of family, spouse accompany, family financial support for dialysis, observing patients’ diet by family, family accompany with getting dialysis, sister’s sympathy, sister’s readiness to donate kidney, family attempts to cope with dialysis by patient, high support of spouse, giving peace and hope by parents.
“My husband is more supportive than the others. Thanks god he has been patiently attending. While praying, I wish not to lose my husband’s kindness”(A 31-year-old woman with two years of dialysis experience.”
“My brothers have given me encouragement, and each of them has been prepared to donate me their kidney. My family is taking care of my health” (A 45-year-old man with two years of dialysis experience).
3.2.2 Reliance on health-care workers
The support received by HD patients included nurse encouragement, dialysis nurses satisfaction, feeling close to dialysis nurses, satisfaction with dialysis nurses “professional services, good spirit of talking to patients by nurses, good dialysis nurses” attitude, free dialysis, medical insurance coverage of specific diseases.
“Before my dialysis, my husband had passed away, so I was crying all the time when I realized that I had to get dialysis. The nursing lady next to me talked and gave me much sympathy” (A 42-year-old female with two years of dialysis experience)
Discussion This study aimed to explain the experiences of patients undergoing HD. The results showed that, in confirmation of the dual status of HD patients, as in the qualitative study of Al-Ghabeesh and Suleiman, HD therapy had both positive and negative views toward dialysis.[22] Experiences of HD patients showed that some of these patients had a good feeling due to feeling recovery, getting hope and peace, increased physical and movement ability, and normalization of dialysis after several sessions. These patients were probably able to achieve some self-sufficiency in managing and feeling a stable condition. In the qualitative study of Vafaei and Nubahar conducted on HD patients, three themes of HD, such as admission, receiving information, and limitations of compatibility were identified as other subthemes of self-care.[23] It can be concluded that these patients had a sense of recovery by self-care and self-sufficiency. The experiences of the patients in the present study showed that some of them were not in good condition after HD. Mental conflicts were one of the factors contributing to this. At the end of their study, Barati et al confirmed the anxiety in patients undergoing HD, and showed that it can affect many aspects of their physical, spiritual, mental, and social health.[24] Furthermore, Delshad Noughabi et al emphasized the need for planning to improve the quality of life of these patients, referring to the high rates of depression, anxiety, and stress in patients undergoing HD.[25] In another qualitative study, Saeedi et al also found that hopelessness and confused thoughts were among the findings as per their data.[16] In the qualitative study of Pashaii et al, one of the themes seen from the data was stresses of life on dialysis.[26] One of the findings of the qualitative study of Al-Ghabeesh and Suleiman was that the stress of the final stage of renal disease and HD was due to various types of physical, mental, financial, and other stressors.[22] Shahdadi and Rahnama also cited the safe treatment environment as a facilitator of care for HD patients and referred to their psychological sensitivities as inhibitors of nursing care. They emphasized the need to improve the quality of care provided by nurses to eliminate this factor as one of the barriers to care.[27]
Other HD patients in this study identified being involved with complications and limitations as the factors for a bad mood. Confirming this, Hejazi et al write about the consequences of lifestyle changes, disabilities, frequent hospitalizations, the need to follow complicated diets, and restrictions on taking fruit and fruit juices along with skin and mucosal manifestations of the disease, have imposed severe changes in lifestyles on patients undergoing HD.[28] In another qualitative study, Asgari et al, also pointed to the limitations in social activities and leisure times of the patients.[29] In Saeedi et al’s study, one of the main factors stressed was the disabling complications of the disease.[16]
In the present study, one of the causes of the bad mood of HD patients was their fear about life on dialysis and other matters. Confirming this, Hejazi et al write that fear of disability and death in HD patients will eventually lead to depression, anxiety, and a decrease in the quality of life of these patients.[28] Sahaf et al also concluded at the end of their study that feeling uncertain about the future is the most important psychological concern of people undergoing HD, and it can affect other aspects of their life and lead to feeling loneliness, hopeless, and disability.[30]
Dual (paradox) emotions of dialysis
Experiences of HD patients in the present study showed that some of them had a positive mood about dialysis as they considered it a life-improving factor, a golden opportunity to be with family, and even as some form of recreation and believed that being on HD was not equal to death. One of the main themes obtained from the data was the positive feeling about the ability to maintain life similar to what was reported in the qualitative study of Vafaei and Nobahar, on HD patients.[23]
The experiences of HD patients showed that some of these patients experienced unpleasant emotions following dialysis. In a qualitative study, Saeedi et al also reported two categories of feeling, overbearing, and dissatisfied with life. Meanwhile, the feeling of helplessness caused by the disease was mentioned as the main finding of this study.[16] The results of the Rejeh et al’s study showed that the frequency of feeling fatigue was high in HD patients.[31] The findings obtained from the qualitative study of Borzou et al, also showed the feeling of dissatisfaction with the living conditions and malfunctioning of the dialysis equipment. In addition, these patients were not satisfied with the existing welfare and cultural facilities.[32] At the end of their study, they suggested that health managers and planners should focus on the HD patients’ facilities to provide better service and periodically update the equipment of HD units based on the needs and developments in the technology.[32]
Reactions to dialysis
The experiences of HD patients in the present study showed that some of them were trying to adapt themselves to existing conditions while on maintenance dialysis. As a result of the qualitative study of Nobahar, the efforts were made to observe diets and to continue taking prescribed drugs, to adapt to changing sleep patterns and physical activity.[33] In the qualitative study of Pashaii et al, on the subject of living with an HD machine, one of the findings obtained from the data was the need for effective adaptation.[26]
The experiences of HD patients in the present study indicated that they relied on family support for problems related to dialysis care. Probably, the high volume of problems on the one hand, and the disabilities and dependence caused by the disease, on the other hand, have led to the need for these patients to receive support from other support sources. Confirming this, Zahedi et al write that patients undergoing HD are dependent on others due to physical and mental problems in performing all or some of their daily tasks.[34] In the study of Pashaii et al, the need for support was one of the main findings from the data.26 Mollazadeh and Hemmati Maslak Pak, conclude that HD patients need more support in the psychological and knowledge aspects.13 At the end of their study, Aghakhani et al emphasized the need for HD patients to receive social support and suggested that health-care providers should facilitate access to health services for these patients.[35]
Conclusion In this study, the experiences of patients with renal failure showed that their dependence on HD was accompanied by both good and bad moods and they had both positive and negative emotions. Influenced by these feelings and emotions, these patients had shown success in adapting to HD and relying on support. In conclusion, we can say that these patients showed dual faces while on treatment with dialysis. Therefore, “dialysis therapy with dual face” was identified as the essence of the experiences of patients undergoing HD. It is important that health-care providers should try to remove the bad and unpleasant face of dialysis.
Conflict of interest: None declared.
References 
Correspondence Address:
Mahin Naderifar
Department of Nursing, Faculty of Nursing and Midwifery, Zabol University of Medical Sciences, Zabol
Iran
Source of Support: None, Conflict of Interest: None
CheckDOI: 10.4103/1319-2442.367829
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