Chronic diseases have become one of the most important challenges for health systems around the world. One such condition is end-stage renal disease (ESRD) (Fructuoso et al, 2011). ESRD is caused by an irreversible defect of the kidney that leads to a gradual and progressive decline of kidney function (Hinkle and Cheever, 2018). The mortality rate due to chronic kidney disease increased from 1% in 1990 to more than 2% in 2013 in Iran (Sepanlou et al, 2017). ESRD is one of the main problems of human health, worldwide (Chiaranai, 2016). It is a severe disease with serious health consequences that negatively affect patients' lives (Gennari, 2017). Haemodialysis is a common approach for the management of these patients and the majority of the overall dialysis population require this treatment (Collins et al, 2012). This procedure uses an artificial kidney for removing waste and extra fluid from the blood (Hinkle and Cheever, 2018).
Fatigue is one of the main problems experienced by haemodialysis patients (Rezaei et al, 2018). Haemodialysis patients receiving long-term dialysis find fatigue a debilitating issue (Jhamb et al, 2008). Fatigue is a multidimensional and unique concept that affects physical, mental, social, and physiological dimensions of patients' lives (Rezaei et al, 2018). Various studies have shown a high prevalence and severity of fatigue in haemodialysis patients (Mollaoglu, 2009; Aktürk and Gül, 2019). Chronic fatigue is an important factor that negatively affects the lives of ESRD patients (Mollaoglu, 2009).
For the treatment team, it is necessary not only to understand fatigue and its side effects, but also how to help patients to resolve their fatigue-related problems and have a better life (Lee et al, 2007). Fatigue is a personal experience and, in order to have a deep understanding of its various aspects, qualitative research can be useful (Maher-Edwards et al, 2011; Rezaei et al, 2018). A qualitative study deals with natural situations and takes a holistic approach using inductive logic (Streubert and Carpenter, 2011). Although all qualitative research has common characteristics, there are several different approaches. The phenomenological method is used to discover subjective experiences (Khan, 2014). Studying a person's lived experience means understanding the subjective experience of a person (Streubert and Carpenter, 2011). To the best of the authors' knowledge, no qualitative study has been done on this topic in Iran.
Aim
The present qualitative-phenomenological study was performed to investigate haemodialysis patients' experience with fatigue. The authors hope that the results of this study lead the reader to a deeper understanding of the nature of fatigue for these patients.
Methods
Through a qualitative-phenomenological study, the nature of fatigue was assessed in haemodialysis patients using Colaizzi's method of analysis (Streubert and Carpenter, 2011).
Ethical considerations
Ethical considerations, including the pr inciples of confidentiality of information, obtaining written informed consent for interviewing, recording the conversations, publishing the findings, and informing the participants about their right to withdraw from the research at any time, were observed. The study was approved by the research and ethical committees of Kermanshah University of Medical Sciences (EC.1395.197).
Setting
The study population included haemodialysis patients referred to Shohadaye Ashayer and Shahid Rahimi hospitals in Khoramabad, Iran.
Participants
Ten male and two female participants were selected (Table 1). Among them, seven were married and five were unmarried. The mean age of the participants was 46.58±16.08 (19–65 years old), and the mean dialysis period was 3.21±2.82 (1–11 years). The participants received three free sessions (4 hours). of haemodialysis per week (haemodialysis is free for patients in Iran); all participants lived in Khoramabad city.
| No | Sex | Age (years) | Marital status | Profession before chronic renal failure | Profession after chronic renal failure | Years of haemodialysis | Education level |
|---|---|---|---|---|---|---|---|
| 1 | M | 65 | Single | University staff | Retired | 5 | Bachelor degree |
| 2 | M | 59 | Married | Labourer | Unemployed | 1.5 | Basic literacy |
| 3 | M | 47 | Single | Driver | Unemployed | 3 | Diploma |
| 4 | M | 54 | Married | Farmer | Retired | 11 | Elementary school |
| 5 | M | 65 | Married | Farmer | Retired | 5 | Elementary school |
| 6 | M | 61 | Married | Clerk | Unemployed | 2 | High school |
| 7 | M | 58 | Married | Teacher | Retired | 3 | Bachelor degree |
| 8 | M | 31 | Single | Taxi driver | Taxi driver | 1.5 | Diploma |
| 9 | F | 27 | Single | Student | Unemployed | 1.5 | Bachelor degree |
| 10 | F | 19 | Single | Unemployed | Unemployed | 1 | High school |
| 11 | M | 34 | Married | Welder | Taxi driver | 3 | High school |
| 12 | M | 38 | Married | Actor | Actor | 1 | Bachelor degree |
The inclusion criteria were to have at least 6 months of haemodialysis experience, no other physical or mental problems, and a desire to share the experiences with the researcher. A purposeful sampling method with maximum variety (in terms of age and treatment period) was carried out until data saturation. The researchers selected individuals with study-related experiences and the ability to share them. Eighteen individual, semi-structured, face-to-face interviews were conducted with the 12 haemodialysis patients and took 50-70 minutes each (in some cases, points needed clarification so some participants were interviewed twice to clarify matters).
Data collection
The aim of the study, the interview method, and the rights of the participants were described to them by one of the researchers. After taking written informed consent from them, semi-structured, in-depth interviews were employed to collect data. The interviewer (the first author) was fluent in the local language of the participants (Persian with the local accent). The researchers in this study were all nursing professionals. The interviewer was a nurse with a master's degree who had 5 years of work experience in a haemodialysis ward. The other researchers were associate professors of nursing and proficient in qualitative research.
The interviews began by asking general questions such as: ‘Have you ever experienced fatigue? And what were the symptoms?’ Then, in order to obtain more information, other questions related to the response of the participants were asked. The response of the participants would guide the interview and determine the next questions. The interviews were recorded with the participants' permission. Next, the recorded interviews and notes were transcribed verbatim and typed.
Data analysis
Voice records and field note were transcribed verbatim. Based on Colaizzi's seven steps methods (Edward and Welch, 2011), data analysis was performed as follows:
Rigour
In order to ensure accuracy of the data, trustworthiness criteria (credibility, transferability, dependability, and confirmability) were used (Streubert and Carpenter, 2011). The researcher who conducted the interviews had long-term experience with the location of the research, which was helpful in winning the trust of the participants. Participants were asked to review and validate the data and codes. In addition, a variety of sampling (in terms of age, gender, and haemodialysis experience) increased the data validity. In order to establish the reliability of the findings, the researcher recorded and reported all the stages of the research, including the collection of data, the analyses, and formulation of the subjects to ensure verifiability. Parts of the interview texts were also reviewed by hospital therapists and university faculty members so that extracted codes and categories were not only assessed by the researchers, but also by several independent observers. By fully explaining the research, it is hoped that the reader will understand how far the findings are generalisable to their own area of practice.
Results
Through data analysis and interviews, 278 key statements were obtained and, after comparing and omitting the repetitive cases, 62 meanings remained. Finally, 18 sub-themes, six theme clusters, and two main themes were obtained (Table 2).
| Sub-theme | Theme cluster | Main theme |
|---|---|---|
| Weakness | Physical problems | Perception of fatigue |
| Physical pain | ||
| Disability | ||
| Aversion | Psychosocial problems | |
| Distress | ||
| Disappointment | ||
| Deprivation | ||
| Dyssomnia | Behavioural problems | |
| Reduction of tolerance threshold | ||
| Daily activity | Limitation | Nature of fatigue |
| Financial problems | ||
| Diet | ||
| Family support | Need for support | |
| Social support | ||
| Acceptance | ||
| Moral support | ||
| Physical burnout | Burnout | |
| Mental burnout |
Perception of fatigue
The first main theme found through data analysis was the perception of fatigue, which is linked to the physical, psychosocial and behavioural aspects of the condition. Most of the participants described their own perception of fatigue in terms of many physical, psychosocial, and behavioural problems. Perception of fatigue was classified into these three main categories.
Physical problems
The data analysis showed that all haemodialysis patients dealt with physical problems.
Disability
‘Not only my body but also my brain became weak.’
‘My body is really weak now, you can see my disability in the way I walk. Before dialysis I could do my work without help, but now I cannot … my body is tired … very tired.’
‘I severely feel fatigue, I cannot even do my routine daily duty.’
Physical pain
Most participants complained of musculoskeletal pain due to the illness and inactivity during dialysis. Some of the participants complained of the pain of insertion of temporary and permanent pathways for haemodialysis and the pain associated with being attached to the haemodialysis apparatus. Participants said:
‘Some women would scream of the severe pain when the needles are connected.’
‘It is very painful when you move your hand.’
‘My body aches and I feel pain all over my body.’
Weakness
All participants complained of a decrease in their energy levels or even a lack of energy, and highlighted a strong relationship between fatigue and energy levels. Lower energy levels are known as one of the symptoms of fatigue. Participants said that a lower energy level can lead to feelings of weakness:
‘You feel weak, when you have no energy.’
‘Weakness makes me bored, it is a bad feeling that your body is tired all the time and you have no energy for doing anything.’
Psychosocial problems
Psychosocial problems were one of the main problems caused by experiencing fatigue. The haemodialysis patients participating in the study stated that one of the aspects of their fatigue was psychosocial problems and, in turn, their psychosocial problems affected their fatigue levels.
Aversion
Due to their mental or emotional difficulties, some participants had strong feelings of aversion to themselves, and some were reluctant to be dependent on dialysis:
‘Because of mental conflicts, I hate myself, I feel the heavy burden of life on my shoulders.’
‘I wanted to be executed instead being in this situation.’
Distress
Haemodialysis patients are highly vulnerable to distress due to their multiple physical problems, and persistent mental conflicts. Participants stated:
‘Being under dialysis makes me tired; it is really frustrating.’
‘Last night, I was depressed so I played my instrument and my wife and I cried.’
‘I would say, I wish to die rather that suffering the pain. My blood pressure rises up.’
Disappointment
The participants felt sorrow and grief about their future and had no plans for their future. In some cases, they said that they had given up and were waiting for death.
‘I have to do dialysis. I don't have money for kidney graft. I am unemployed. I have no one except God. I feel deeply frustrated.’
‘The future has no meaning for me. It makes no sense. Anything about [the] future is blurred.’
‘I have no hope for tomorrow let alone the future.’
Deprivation
Deprivation was an important part of the participants' experience. One of the participants stated:
‘Everyone has a goal in life, but not me. I have no energy for doing anything. I can feel my deprivation in others' behaviour towards me.’
Behavioural problems
A reduction in participants' tolerance threshold and dyssomnia were two key problems experienced by the haemodialysis patients that lead to an increase in fatigue levels.
Reduction of tolerance threshold
Most haemodialysis patients experienced irritability, aggressiveness, impulsiveness, and no control over anger. There are tangible changes in individuals' behaviours after initiation of haemodialysis procedure. Participants commented:
‘A simple question can make me angry.’
‘I cannot control my anger. I am very irritable.’
Dyssomnia
Most of the participants were faced with problems such as nightmares, dyspnoea, drowsiness, disruption of sleeping rhythm, insomnia, and a tendency to fall asleep during the day
‘I see nightmares a lot and when I wake up, I feel fatigue.’
‘I cannot sleep. I always wake up in the middle of [the] night. I see nightmares most of the time. Before this I had no problem with sleeping.’
Nature of fatigue
The second main theme obtained in the present study was the nature of fatigue, which has a relationship with limitations, the need for support and burnout.
Limitations
Haemodialysis patients suffer from disability and dependence on haemodialysis devices, which limits the both physically and psychosocially.
Diet
Although some patients said they were accustomed to the prescribed diet, others found this a problem and believed that dietary restrictions exacerbated fatigue.
‘I do not have appetite for food and its smell bothers me.’
‘Eating was a kind of fun for me, and now I have to decrease it. I cannot eat most of the food that I really like. This has its toll on me.’
Financial problems
Although haemodialysis services are free in Iran, most patients are unable to work because of their illness and often have no income, or a greatly reduced income, which creates financial problems for them. Many participants complained of financial problems and some do not have the money to pay for transportation to dialysis centres.
‘Nowadays life is even hard for a healthy person, let alone a person like me that cannot work well. I feel tired and I cannot cover the daily expenses.’
Daily activities
Disability results in emerging limitations in activities and personal and social interactions. According to participants, many of their friends had left them after they were diagnosed with kidney disease. Most of the participants stated that they were not interested in creating new relationships due to their physical condition.
Because of the disease, many could keep their jobs or find new ones and could not continue their education. Because the haemodialysis patients are dependent on the dialysis machines, they could not travel easily.
‘I cannot do my daily activities [on] my own.’
‘I cannot travel, because I need to arrange my plans based on the dialysis schedule; otherwise, it may take until [the] end of the day, which is too hard for me.’
‘I do not like socialising, unless I have to.’
Need for support
In addition to disabilities and limitations, haemodialysis patients have a number of needs that, if satisfied, can help to control their fatigue, but if they are not, their fatigue may be exacerbated.
Family support
The family was the most important source of support for participants. Full support from the family encourages and improves the condition of the individual and facilitates the treatment process.
‘I do not feel alone when my wife comes with me. I can tolerate the pain. Sympathy of my wife counts and I feel better.’
‘I really feel better when my family supports me and speaks to me.’
Social support
Participants expected financial support from the government and moral support from the healthcare staff.
‘I only expect a good and friendly behaviour from the personnel. It would be nice if they [would] speak to me like a family member not like a patient.’
‘It would be better if the government pays extra money for the transportation to hospital. Because of weakness only a limited number of us can work, so we have financial problems.’
Acceptance
Due to the physical deprivation and society's attitudes to these patients, many feel frustration. Family and friends' acceptance can increase self-confidence in the patients. Participants commented:
‘Speaking with a friend can be effective. It is a good feeling that you see someone loves you, thinks about you, and you are not alone.’
‘It really feels good when my family come and visit. It shows that they see me and I am important for them.’
Moral support
Participants also mentioned the importance of trust in God. One of them said:
‘I believe in God's power, it is only my belief in God that enables me to cope with this.’
Burnout
The data analysis showed that the long-term problems of physical and financial limitations, mental and physical disabilities, lack of support, isolation, lack of achievement, and loss of hope led to physical and mental burnout so that patients only think of death. People who are suffering from mental or physical burnout are often easily irritated and overwhelmed, even by small problems. They feel that others do not understand them. Some participants commented:
‘I think a lot about my disease. I think about the duration of this process.’
‘I only want to die and stop the pain. I see no solution except this.’
‘It is worse than cancer because it is a repetitious process.’
Discussion
The results of this study showed that the different physical and psychosocial effects of ESRD and haemodialysis can cause fatigue. Other studies have also emphasised the physical, psychological and social factors in fatigue in these patients (Mollaoglu, 2009; Horigan, 2012; Sakkas and Karatzaferi, 2012). Rezaei et al (2018) performed a qualitative study on haemodialysis patients and noted their experiences of fatigue and physical problems. For 90% of patients, fatigue is defined as a lack of energy (Mollaoglu, 2009). Frier et al (2018) found that disability after dialysis had significant effects on the lives of patients and their families. In a systematic review study, the prevalence of acute and chronic pain in haemodialysis patients was 82% and 92%, respectively (Brkovic et al, 2016). These pains are the most commonly reported at the site of access to arteries, and as headaches and musculoskeletal pain (Brkovic et al, 2016). Lee et al (2007) highlighted the lack of physical energy to perform daily activities in these patients.
The results of the present study showed that behavioural problems and their resulting effects, such as a reduced threshold of tolerance and insomnia can be understood as signs of fatigue in patients. Studies have shown that the complications of the treatment process and its associated problems can cause physical and mental exhaustion in haemodialysis patients and drastically reduce their energy and endurance (Lee et al, 2007; Rezaei et al, 2018; Aktürk and Gül, 2019). Sleep deprivation and sleep disorders can exacerbate physical and mental problems and can lead to numerous psychosocial and behavioural problems, which can contribute to the development of fatigue.
The results showed that the nature of fatigue is linked with limitations on patients' daily lives, their need for support, and physical and mental burnout. Some studies have argued that the limitation on the diet of haemodialysis patients negatively affects them (Nix, 2013; Zyoud et al, 2016; Rezaei et al, 2018).
Many participants stated that they had deliberately chosen isolation because their interests and motivation were diminished and they were indifferent to the surrounding environment. They also explained that they were afraid of the way in which others might treat them.
The patients perceived the need for support as one of the most important factors of the nature of fatigue. The need for moral, social and familial acceptance were important to participants. The physical and mental disability caused by chronic diseases have a major impact on a person's social life as these individuals are not able to maintain a job and need to be supported by others (Rezaei et al (2018). Yu and Petrini, 2010 indicated that social support is realised when a person feels that they are treated as a valuable person by others. People with high levels of social support have a better chance to adapt to life events. Social support has been described as the level of satisfaction with the emotional, attachment and security support a person receives (Sit et al, 2004).
Studies have shown that without spiritual health, other biological, psychological, and social dimensions cannot have a proper function or reach their maximum capacity. Some studies have highlighted spirituality in their assessment of patients' quality of life (Chiaranai, 2016; Cruz et al, 2017). Cruz et al (2017) recommended combining religious actions with the healthcare process to provide holistic care and achieve better health outcomes. In this regard, drawing on local customs and culture can also be helpful. Moreover, family interactions and the supportive role of the family, which is very important in Iran (Ahmadi et al, 2018), can influence clients' experiences with the nature of fatigue.
To help prevent and control fatigue in patients, along with providing haemodialysis education to patients and their families, health professionals can use different care methods such as family-centred care, allowing patients to participate in self-care processes, and educating families about the possible physical and mental changes and behavioural problems to expect. Holding group education courses for patients to improve their self-esteem and promoting non-pharmaceutical treatments to improve their quality of life are also recommended.
Conclusion
The participants in this study perceived fatigue as a physical and mental problem that caused difficulties and hardships that they experienced on a daily basis.
The psychosocial problems of haemodialysis patients are multifaceted and complex, given the nature of the disease, family circumstances, and underlying illness. These patients' lives are restricted as a result of the illness and the stressful haemodialysis treatment, and these limitations require special support and attention. If these limitations on patients' lives are not addressed the physical and mental burnout will continue.