The patients’ sociodemographic details are shown in Table 2. The duration of patients’ hemodialysis treatment ranged from 1 to 17 years, with an average age of 41.32 years. Of the patients, 44% were a full-time workers, and 68% were married.

Table 2 Patients’ sociodemographic data

The thematic analysis of the study data revealed an overarching theme, Self-initiated management strategies, which outlined the coping mechanisms patients used to reduce fatigue and adapt their daily life activities to its ongoing presence. This theme captured six subthemes (Table 3), which illuminate these strategies as follows: (1) self-regulating weight gain and negotiating accumulated fluid removal with HCPs; (2) Increased appetite and desire for rest; (3) expanding self-awareness for change; (4) engaging in regular physical activity; (5) seeking deeper understanding and support from others and (6) immersing in faith and religious practices.

Table 3 List of emergent theme and subthemesSelf-regulating weight gain, and negotiating fluid removal

A common strategy used by all patients to reduce fatigue was to manage weight gain between hemodialysis sessions by minimizing their fluid intake. Most patients sought to moderate their fluid intake to make the hemodialysis sessions more tolerable. Although weight gain was expected due to their inability to excrete fluid, patients reported that it made them feel unwell and many resorted to strategies to reduce its impact.

… I feel fine as long as I maintain my extra weight at no more than 3.5 kg above [normal]. (Phase 1: NHC: P02)

The negative feelings associations with extra weight were most prevalent during non-hemodialysis days, as extra weight affected patients’ physical and psychological wellbeing and their quality of life.

If I don’t do dialysis for two days, the amount of fluid in my body will be greater [than usual] and I feel very exhausted… (Phase 1: BHC: P22).

In addition to self-initiated weight management strategies such as limiting oral fluid intake, patients who felt they had accumulated extra weight often negotiated with hemodialysis staff over the amount of fluid that could be safely removed on a particular day depending on their perceived level of tolerance. In such cases, the patients negotiated the remaining fluids to be removed during the hemodialysis session. This negotiated fluid removal strategy led to less severe Post Dialysis Fatigue (PDF), which in turn helped patients regulate their weight before the next session, as this participant explained:

[I]f I drain more than 4 kg during my dialysis session, I feel very exhausted… For example, if I’ve gained 5–6 kg extra weight, I ask the staff to remove only 4 kg, and the remaining 1–2 kg will be removed next session. At home and before next session, I make sure to drink and eat less, and sometimes I fast for one day to make sure I don’t gain much weight. (Phase 1: NHC: P05)

Increased appetite and desire for rest

Most participants sought to eat, rest and sleep immediately after hemodialysis to recover from the fatigue. Most reported feeling ‘an unusual hunger’, which further aggravated the feeling of PDF. When asked about this post hemodialysis, most patients reported that they usually had a good appetite and felt the need to eat post hemodialysis and frequently ate a large meal to boost their energy levels before going to sleep.

I arrive home at 1 p.m. I feel like I am starving and have no energy to do anything. That is why I take a heavy lunch before I sleep… (Phase 1: BHC: P15).

All participants emphasized the importance of resting and sleeping directly after hemodialysis to manage PDF and to be able to resume daily activities. While the need for sleep appeared to be universal, the recovery time they required varied from patient to patient. Because the recovery time from PDF was unpredictable, the sleep they required also varied. Some participants needed only a less hours of sleep while others required several hours, sometimes extending to the next day before they felt fully recovered.

I can’t say precisely because it depends on fatigue. I feel mostly fine when I sleep for two to four hours after the sessions. Sometimes, I need to sleep the whole day to feel fine… (Phase 1: BHC: P23).

The amount of time patients needed to rest after hemodialysis seems to depend on the severity of their PDF. The findings from this study clearly indicate that those with less severe PDF symptoms needed shorter periods for rest compared to those who experienced more severe symptoms following hemodialysis. The findings revealed that patients with less severe symptoms recovered more quickly and were able to involve themselves in and effectively manage their daily obligations and responsibilities. Participants in this category described PDF as a ‘slight ordinary tiredness’ to which they had become accustomed and which they had integrated into their daily life routine. Some patients suggested that the reason they experienced less severe PDF was because they were more actively engaged in daily life activities and socializing with families.

… after dialysis sessions. I go directly to visit my mum and have food with her because I feel hungry. After that, I go to the farm and do some work… (Phase 1: NHC: P04).

Expanding self-awareness for change

Most participants acknowledged that understanding their current strengths, weaknesses and emotions related to the illness would help them overcome the challenges associated with hemodialysis. As a result of this increased self-awareness and proactivity, some patients were able to continue to work full-time while receiving hemodialysis three times per week.

being aware about my needs and how to fulfil them and doing something I enjoy helps me to lessen fatigue, feel psychologically comfortable, and enjoy my day. (Phase 1: BHC: P11)

Being self-aware helped some to identify life stressors which influenced fatigue severity. As they became more aware of their mental and physical wellbeing through introspection and reflection, such patients become more able to take active steps to restore their real self-identity, which the illness had somewhat eroded. One aspect of this introspection was learning more about their emotions and how to deal with them. This ability to examine their thoughts and feelings and rebuild their self-identity and modify their behaviour had a positive effect on their physical and mental health.

I was having negative thoughts, felt angry easily, and my mood was unpredictable. I think, if I hadn’t begun to notice myself and learn to change these feelings, I would be a negative person by now.… Now, I don’t feel angry, and being calm saved my energy level and I feel relaxed and comfortable (Patient smiles). (Phase 1: NHC: P01)

The study findings revealed that emotional intelligence was related to social integration with others. Those who were more emotionally intelligent (i.e. more aware of their thoughts, the responses of others and how they could be positively managed) were more likely to try to adopt a positive attitude about their condition despite their fatigue, and therefore more likely to report a level of social integration similar to that which they enjoyed pre-hemodialysis. Such participants reported feeling self-motivated, sociable with others, optimistic about their lives, and intentionally sought to make behavioural changes, especially those they believed could improve their physical and psychological wellbeing.

I realize that if I don’t motivate myself and make myself optimistic, I feel emotionally tired and more fatigued. (Phase 1: BHC: P13)

Conversely, patients who tended to have negative thoughts appeared to gravitate towards negative attitudes, which appeared to increase the severity of their fatigue. These patients had poorer self-management and behavioural skills, and reported reduced motivation to address their negative emotions and behaviours. The researcher also noted that most of these patients gave up easily and this negativity translated to them presenting as more passive about seeking change to their lives and how they handled events such as emotional meltdowns (things become unbearable) and aggression towards others,

Everything changed since I started hemodialysis. Even my husband told me once, ‘You become aggressive and irritated easily for no reason sometimes.’ I don’t know what to do to change such bad behaviours. (Phase 1: BHC: P17)

Engaging in regular physical activity

Participants reported that physical exercise helped them to reduce the severity of fatigue and increase their muscle endurance, thereby increasing their ability to manage daily life activities.

If I stop doing exercises for a while, I feel fatigue, pain in my legs and psychologically overwhelmed. (Phase 1: NHC: P04)

Regular physical activity helped patients improve their physical fitness and maintain optimal health. It also prevented them from developing complications that could contribute to their fatigue, such as muscle weakness and eventual atrophy. Those patients who realized the benefits of exercise continued to be motivated and maintained regular physical activity despite the experience of fatigue. In fact, those who were physically active reported that they felt energetic and suffered less pain.

A major motivation for patients, apart from countering fatigue, was their belief that regular exercise would reduce their risk of cardiovascular disease and diabetes that would further aggravate negative consequence of kidney disease and fatigue. In addition to the physiological benefits, participants acknowledged that regular physical activity helped reduce stress and improve their mood.

I must do some activities to maintain fitness, muscle strength, and if I don’t go for a walk, I feel sluggish, uncomfortable and more fatigue… I do exercise also because I don’t like to be at risk for diabetes or heart problems, and you know we’re vulnerable for such things. (Phase 1: BHC: P22)

Most participants expressed that less strenuous forms of exercise were more suitable. While walking was the form of exercise favoured by most hemodialysis patients, some participants preferred even less strenuous group exercises such as Zumba and yoga, both of which are based upon a program of choreographed movements designed to promote fitness and wellbeing. It was interesting to observe that most participants felt motivated and encouraged when engaging in group exercises, or when a relative or friend accompanied them to an exercise session.

I realized doing Zumba with the group motivated me and I was socially engaged as compared with being alone at home… (Phase 1: BHC: P17).

Most participants reported that they performed their exercises on non-dialysis days as this helped to improve their energy levels and psychological wellbeing.

I go for a walk on the beach for at least 30 min on off-dialysis days, and sometimes I swim in the sea. (Phase 1: BHC: P22)

Almost four times per week I go for a walk for at least half an hour, and sometimes I go cycling, which helps me to be energetic and feel less stressed. (Phase 1: NHC: P04)

While most patients advocated regular exercise, they were aware of the limitations they had come to accept as a consequence of their disease, condition and treatment. Participants said that they were incapable of involving themselves in strenuous exercise that required physical and mental exertion, such as football or ping-pong and athletics. Many participants reported that they had stopped playing team sports because they exhausted easily and were concerned about the potential risk of injury, especially to the fistula site. Others expressed concern that strenuous exercise could increase the risk of unpleasant symptoms such as pain, dyspnoea and heart-related problems.

[M]ost exercises are not appropriate for us [patients on hemodialysis] and I think patients on dialysis should avoid heavy exercises, because they might deteriorate, and have a lot of problems or even heart complications. (Phase 1: BHC: P19).

Findings revealed that participants who engaged in minimal physical activities, or those who had a sedentary lifestyle, appeared to suffer from more fatigue that those who, despite the difficulties, endeavoured to keep active. Indeed, the findings indicate that the less active patients tended to be less motivated and less socially engaged compared to their more active peers.

The less active participants assumed that engaging in exercise would increase their feelings of fatigue, hence they preferred to use their energy to complete house chores, rather than ‘wasting time’ on physical exercise.

[I]t’s difficult to do exercise because I’ve no energy and spend most of my time at home.… and I think doing household chores is enough for me, so no need to do exercise. (Phase 1: BHC: P07)

Seeking deeper Understanding and support from others

The study participants echoed a view that being understood and supported by others was essential to managing fatigue and maintaining a sense of normality or balance in life. To this end, hemodialysis patients sought support from their families, siblings, hemodialysis centre staff and, for those still employed, from their colleagues in the workplace. Participants reported that having support networks helped them to effectively manage fatigue in their daily lives.

Honestly, with this treatment I wouldn’t have been able to move on in my life without my family’s support. (Phase 1: BHC: P07)

The family emerged as the primary and greatest source of support for patients receiving hemodialysis, who viewed it as essential for maintaining family unity and relationships. The findings indicate that such support was most appreciated when it involved help with tasks that patients had previously failed to accomplish due to severe fatigue and other challenges.

My family’s support and understanding helps me a lot to cope with my treatment and fatigue, especially tasks which I can’t do. (Phase 1: BHC: P14)

The study revealed that many spouses cared for the needs of their sick wives or husbands. Participants reported that spouses often go to great lengths to create a comfortable and relaxing atmosphere to help the patient enjoy a good rest and sleep. This extra care was pronounced when patients arrived home from hemodialysis sessions. Over time, family members, especially spouses, became familiar with the patient’s fatigue and associated emotional problems. This knowledge makes families much more able to meet the patient’s needs, which helped them manage their physical and mental fatigue.

… When I [patient] feel burnout when I can’t fulfil my responsibility and am in a bad mood, my husband will usually take me out for a walk on the beach. We talk and share stories, which really help me to feel better and divert the negative thoughts in my mind that I can’t get rid of it without his [her husband’s] support. (Phase 1: BHC: P20)

Most participants felt that being with friends helped to create an enjoyable and relaxing atmosphere. The findings indicate that friends, especially close ones, motivated hemodialysis patients to exercise and engage in social activities that enhanced their psychological wellbeing and thus levels of fatigue.

I feel motivated to do exercises with them [friends] and we have fun while we are doing exercises. Sometimes, I travel with them on short trips… (Phase 1: BHC: P08).

Participants in full-time employment spoke about the support and the understanding they received from their managers, which helped them to manage fatigue and their work responsibilities. The support patients received in the workplace took various forms. In some cases, the patient’s manager allowed them to rest when they were tired. Others reported that their managers gave them enough time to accomplish their assigned tasks, while in other cases managers helped patients to adjust and coordinate between their work and hemodialysis sessions. Having an understanding manager who accepted and made accommodations for their medical needs affected employed patients positively by putting their minds at rest.

At work, they [the manager and co-workers] are very supportive and helpful. They help me to adjust between my treatment and work… (Phase 1: BHC: P10).

… This supportive working environment decreased my stress. Because their support calmed me psychologically because I was worried about losing my job… (Phase 1: BHC: P24).

The most significant support HCPs offered patients was medical management of their condition. Specifically, HCPs worked to rectify abnormal blood investigation values and prescribed medications such as iron supplements or epoetin injections to improve haemoglobin levels and other medications to eliminate or reduce unpleasant symptoms such as itching, which contributed to fatigue.

[I]f the haemoglobin falls below 9, the doctor prescribes medications during my session such as iron and epoetin injections. (Phase 1: NHC: P01)

This participative form of care and support led most participants to feel that there was a shared responsibility between medical staff and patients in maintaining normal blood values to avoid unpleasant symptoms that contributed to fatigue. They were eager to receive the results of their blood work from clinical staff, such as blood phosphorus and haemoglobin levels, because these were deemed essential to allow them to modify their diet and fluid intake after each session. In fact, patients took deliberate steps to avoid abnormal results that might cause low energy levels or contribute to the feeling of fatigue.

One of the things I do to get energy and feel less fatigue is eating what I like, but it is very important to know my blood results on a regular basis because if the result is abnormal, I need to avoid certain foods…(Phase 1: BHC: P11).

Immersing in faith and religious practices

All the patients who took part in this study were self-reported as being Muslim, and all considered a faith in Allah to be an essential coping and motivational strategy in the management of fatigue. Islamic religious practices such as prayer were adopted by patients as complementary and alternative treatment modalities during their ill health. Indeed, patients’ absolute faith in Allah and the Islamic commandments empowered them to accept their illness and the treatment process, which in turn helped to reduce mental fatigue.

As a Muslim, I believe that this is a matter of judgment and fate… When I feel fatigued, I pray to Allah to give me strength and my faith in Him keeps me motivated during my day to do my tasks. (Phase 1: BHC: P19)

Participants reported feelings of gratefulness to Allah because they were still alive, and blessed because they had access to hemodialysis, knowing that others were not so fortunate. A sense of spirituality and religious belief seemed to motivate participant to commit to their hemodialysis regimen and also empowered them to cope with fatigue. Other participants reported an optimism about life, even though they clearly had poor health.

… Yeah, fatigue is present but with the hemodialysis treatment and my faith in Allah, I feel fine as long there are no other complications. (Phase 1: BHC: P07)

… I [patient] thank Allah for his blessing because having kidney failure isn’t the end of life and we’ve a treatment while other patients don’t. (Phase 1: NHC: P01)

Most participants felt that praying in the mosque provided spiritual support, calmness and peace of mind. Visiting and praying in the mosque also offered a community context, providing a means of maintaining social contact with families and neighbours. For some, walking to the mosque was a form of exercise and helped to improve energy levels. In summary it seems there were benefits to be had from having spiritual belief and the process of demonstrating that belief through attending the mosque that helped them to enhance physical and psychosocial wellbeing.

I pray most of the time in the mosque, where the spiritual atmosphere helps me to relax and feel an inner peace… Sometimes, we [the people in the mosque] gather and share stories and news… Also, one of the things that helps me a lot with my fatigue is when I walk to the Mosque. The Mosque is about 500 m from my house… This is really exercise for me! (Phase 1: BHC: P14)

Some patients opted to read or listen to the Quran during hemodialysis sessions in order to relax, ‘calm their soul’ and avoid boredom. Reading the Quran helped patients to cope with difficulties resulting from the treatment process and the associated fatigue.

… I read the Quran to relax and sleep, especially when I’m tired, or I can’t sleep due to disturbing thoughts that keep me awake. (Phase 1: NHC: P04)