A continuous juggle of invisible forces: How fatigued dialysis patients manage daily life

Abstract

Dialysis patients commonly experience severe fatigue. Fatigue is known as an intrusive symptom strongly affecting perceived quality of life. A total of 23 interviews were conducted to explore how dialysis patients respond to fatigue symptoms and its consequences in daily life. A constructivist grounded theory approach guided data analysis and conceptualization of findings. Patients find themselves within a continuous decision loop, considering ones (physical) abilities and questioning ones normative beliefs and values. This inner process interacts with the outside world, and contains various ambiguities. Improved understanding of this demanding process could help to better address fatigue and positively contribute to the quality of life of dialysis patients.

Keywords

end stage kidney disease fatigue gender health psychology qualitative methods

Introduction

Renal patients receiving dialysis treatment commonly experience severe fatigue. Fatigue is known as a stressful and intrusive symptom that strongly affects perceived quality of life (QoL) (Cardenas and Kutner, 1982; Murtagh et al., 2007). Increasingly, the experience, impact and causal factors of fatigue in dialysis patients are being studied (Bonner et al., 2010; Chang et al., 2001; Lee et al., 2007; Yngman-Uhlin et al., 2010); however, there remains a lack of understanding about the perception of fatigue from a first-person perspective and the internal process underlying fatigue response. This qualitative study aims to provide insight into the way dialysis patients perceive and respond to fatigue symptoms and its consequences in daily life, taking into account their social roles and perceived responsibilities.

Kidney disease and treatment

Worldwide, 10 percent of the population is affected by a chronic kidney disease (CKD) causing a gradual loss of kidney function (White et al., 2008). Patients are diagnosed with end-stage renal disease (ESRD) when their kidney function drops below 15 per cent, and renal replacement therapy (RRT) is required to survive. The number of patients in need of RRT is increasing by roughly 5 per cent each year (Ponnaluri and King, 2016). A large and growing proportion of patients are elderly people, aged 65+ (Hoekstra et al., 2016; Pugh et al., 2016). Kidney transplantation is the preferred treatment from a QoL and survival perspective (Liem et al., 2007); however, due to a donor shortage and constraints in medical eligibility for transplantation, the vast majority of patients depend on long-term dialysis treatment, either haemodialysis (HD) or peritoneal dialysis (PD). Both treatments filter and purify the blood from waste and fluid. HD is the most common of the two treatments; of 72,000 European ESRD patients starting RRT in 2013, 79 per cent commenced HD, and 15 per cent commenced PD treatment (Kramer et al., 2016). Although dialysis treatment is life-sustaining, the treatment is perceived as burdensome and only partly replaces normal kidney function (Waterman et al., 2015). Patients commonly experience multiple health complaints such as muscle cramps, itch, nausea and restless legs, which are often attributed to the disease and treatment (Merkus et al., 1999; Yong et al., 2009). In addition, patients often suffer from comorbidity such as diabetes, hypertension, coronary heart disease, anaemia and neuropathic pain (De Leeuw, 2017). With a prevalence ranging from 60 to 97 per cent, fatigue is often reported as one of the most severe and intrusive symptoms, and strongly impacts the overall well-being and QoL of dialysis patients (Cardenas and Kutner, 1982; Murtagh et al., 2007).

Fatigue in dialysis patients: experience and causal factors

Fatigue is known as a subjective symptom that can vary from tiredness to exhaustion, and is associated with various unpleasant sensations such as feeling sick, weak, weary and worn out (Bossola et al., 2011). Experiencing a persistent lack of energy is often perceived as a source of stress and frustration, and restricts patients in their functional capacity, thereby affecting physical, cognitive and social functioning (Logan et al., 2006; McCann and Boore, 2000; O’sullivan and McCarthy, 2007). Lee et al. (2007) distinguish three dimensions of fatigue as perceived by dialysis patients: physical, cognitive and affective fatigue. These diverse fatigue dimensions respectively give rise to feelings of diminished physical strength and energy, reduced cognitive function (memory loss, concentration) and decreased mental strength, for example, feelings of lethargy and loss of motivation. Fatigue is often interpreted from a medical perspective, and attributed to a combination of physiological and treatment-related factors such as loss of kidney function, anaemia, inflammation, medication use, and the burden of dialysis intensity and frequency (Bossola et al., 2011; Jhamb et al., 2008). However, a growing body of research indicates that fatigue should be understood as a multi-dimensional phenomenon caused and perpetuated by a complex interaction of physiological processes, psychosocial phenomena and behavioural manifestations (Aaronson et al., 1999; Jhamb et al., 2008). Several studies among dialysis patients confirm that apart from clinical factors and the burden of treatment, moods, beliefs and behaviours influence fatigue perceptions (Chilcot et al., 2016; Lee et al., 2007).

Understanding symptom perception and response

The symptom perception model is useful for explaining the way in which individuals detect and attribute symptoms, and behave in response (Pennebaker, 2012; Skelton and Pennebaker, 1982). The model is based on the assumption that a symptom is an outcome of a perceptual process: ‘A physical symptom or sensation is a perception, feeling or even belief about the state of our body’ (Pennebaker, 2012: 1). The biomedical model assumes a causal relationship between biological state and symptoms, but physiological activity itself cannot solely explain symptom experience. Pennebaker (2012) suggests that the internal state is informed by various stimuli such as physiological processes, emotions and environmental factors. Detection and interpretation of signals determine the eventual experience of symptoms (Kolk, 2002). Due to limited attentional capacity, not all stimuli are continuously and consciously processed. The selection process of information may depend on cognition and traits of the individual, as well as the availability and dominance of external information (Gijsbers van Wijk et al., 1991). A lack of distracting stimuli from the external environment, as well as the tendency to focus on one’s own body, promotes the observation of physical sensations. These sensations are then attributed to somatic, psychological or environmental causes. This suggests that perceptions and responses to symptoms differ among individuals, depending on individual characteristics and one’s context.

Sex and gender differences in the manifestation and experience of symptoms

Differences in the manifestation of illness and the experience of symptoms between men and women have been increasingly acknowledged (Ashuntantang et al., 2018; Barsky et al., 2001). ‘Sex differences’ generally refer to differing biological characteristics between males and females. Numerous epidemiological studies have shown that the prevalence of CKD is higher among women than men (Carrero et al., 2018). This difference may be partly explained by the longer life expectancy of women and the natural decline of kidney function, and possible over-diagnosis by the use of glomerular filtration rate (GFR) estimations (Carrero et al., 2018). Notably, the number of men starting RRT exceeds the number of women starting treatment. It has been reasoned that the protective effects of oestrogens in women and/or the damaging effects of testosterone may cause kidney function to decline faster in men (Carrero et al., 2018).

In addition to biological explanations, psychosociocultural factors may also explain differences in illness manifestation and treatment, such as unhealthier lifestyles among men and a preference for conservative care above dialysis treatment in older women (Carrero et al., 2018). This may be attributed to gender differences. ‘Gender’ is used to refer to differing socially and culturally allocated roles, characteristics, behaviours, and expectations associated with being male or female (Doyal, 2001; Krieger, 2003; Lagro-Janssen, 2016; Samulowitz et al., 2018). For example, men and women are socialised by gender norms, prescribing behaviours ‘which are generally considered to be appropriate, desirable and normal for men and women’ (Johnson et al., 2009; Samulowitz et al., 2018: 3). Various gender constructs have been described (e.g. Tannenbaum et al., 2016). Gender roles represent the behavioural norms applied to men and women in society, which influence individuals’ everyday actions, expectations and experiences. Gender roles often categorise and define individuals, for example, within the family or the labour force. Gender identity describes how we view ourselves, and how we are seen by others, as ‘female’ or ‘male’, or across a feminine-masculine continuum. Gender identity affects our feelings and behaviours. Gender relations refer to how we interact with, or are treated by people in the world around us, based on our ascribed or experienced gender. From a gender relations theoretical perspective, men and women’s health is interrelated, and gender must be perceived as a relational structure rather than an individual characteristic (Connell, 2012). Gender norms influence how people perceive their roles, tasks and responsibilities in life; what people should do and how they should interact with others. Gender plays a role in the perceptions and responses to disease and treatment, including fatigue, and can help to better understand health phenomena and how they affect men and women (Tannenbaum et al., 2016).

Among the general population, one of the most self-reported health complaints is fatigue, a symptom far more often reported by women than men (42.5% and 28.4%, respectively; Van der Linden et al. (2004); Gijsbers van Wijk et al. (1991)). In addition to female-specific biological factors (such as menstruation, pregnancy, and contraception), Bensing et al. (1999) report that social context and living situation are relevant factors in relation to differences in fatigue between men and women. Several studies within the context of kidney disease also show that fatigue is more frequent and more severe in dialysing women compared with men (Carrero et al., 2018; O’sullivan and McCarthy, 2007). Suggested explanations for these differences are attributed to cultural factors, such as women being more willing and able to express illness-related problems compared with men. Furthermore, the burden of responsibilities within the home may contribute to higher levels of fatigue in women (Mollaoglu, 2009).

This qualitative study was conducted in order to gain a better understanding of how dialysis patients respond to fatigue and its consequences, taking into account their social roles and perceived gendered responsibilities in daily life. Ultimately, improved understanding of the internal process underlying fatigue response, and possible gender dynamics, can help to better address fatigue and positively contribute to the QoL of dialysis patients.

Method

Participants and recruitment

ESRD patients were purposively recruited following a call by the Dutch kidney patient association and via our professional network. Patients were eligible to participate if they were aged 18 years or older, experienced fatigue and were on dialysis. Patients who were able to retrospectively reflect on daily life and dialysis-related fatigue after kidney transplantation were also able to participate. Patients who showed an interest in participating were contacted via phone by one of the researchers. The study aims were explained and during a brief conversation, patient’s expressions about fatigue were generally assessed. To capture a broad range of experiences, we included a maximum variety of participants with regard to sex, age, dialysis treatment and dialysis vintage (see Table 1).

Table 1.

Participant characteristics (N = 23).

Sex	n
Male	12
Female	11
Age
24–35	1
35–45	3
45–55	5
55–65	9
65–75>	5
Ethnicity
Western	21
Non-Western	2
Marital status
Married/relationship	15
Single	2
Widowed	2
Separated/divorced	1
Unknown	3
Living situation
With spouse/partner/relatives	12
Alone	5
Living apart together	2
Unknown	4
Employment status
Working (part-time)	2
Voluntary work	6
Retired age	4
Unemployed (due to illness)	15
Unemployed	2
Treatment
HD	16
PD	3
Transplanted	4
Dialysis vintage (years)
<1	1
1–4	11
5–8	6
8>	5

HD: haemodialysis; PD: peritoneal dialysis.

Data collection

Twenty-three semi-structured interviews were conducted between February 2014 and May 2015. Two researchers (K.S., W.B.) and a co-researcher (J.J.C.) conducted the interviews. The co-researcher was involved in all phases of the research cycle (from design to analysis) and was trained on the job as a full research member. In addition to collaborating as a research member, the co-researcher was involved as an experiential expert in the field of kidney disease (Abma et al., 2009; Nierse et al., 2012). Her experiential knowledge complemented the scientific perspective, which enriched data collection. Both interviewers have backgrounds in psychology, and one of them (K.S.) worked as a health psychologist. Having CKD herself, her knowledge also comprised the lived experience of renal failure. Three academic research trainees in health sciences assisted the team in data collection. The trainees were guided and trained on interviewing skills prior to and during data collection. The semi-structured in-depth interviews lasted about 45–90 minutes. Participants themselves chose to be interviewed in their homes, in the dialysis ward, or in the university hospital. All interviews were audiotaped (after receiving verbal consent) and transcribed verbatim. The interviews were guided by a topic list that was prepared in advance (see Appendix 1), and ample room was given to participants to introduce their own experiences from a first-person perspective (Kvale and Brinkmann, 2009). Initially, available literature on fatigue among dialysis patients and other chronic populations was explored. Subsequently, the main topics and adequate open-ended interview questions were discussed among the team members. The interviews comprised questions about the experience of fatigue, responses to direct sensations of fatigue and its overall consequences in daily life. Interviewees received a written summary of the interview in order to verify the content and provide the opportunity to nuance or adjust the interpretation of the researchers (respondent validation) (Barbour, 2001). Adjustments, if any, were included in the final version of the summary. In the first round, 14 participants were recruited. Interviews were conducted and analysed as part of an iterative process (Barbour, 2001). A subsequent round of recruitment was initiated in order to further deepen and enrich emergent insights. This emergent, purposeful sampling strategy (Lincoln and Guba, 1985; Patton, 2002) helped us to deliberately include experiences that were lacking in existing works, for example, the experiences of middle-aged women (see Table 1, ‘participant characteristics’).

Data analysis

Initially, data were subject to a thematic analysis along the lines of the constructivist grounded theory approach (Charmaz and Belgrave, 2012). Interview transcripts were thoroughly read line-by-line, and themes recurring from the interview data were coded and categorised (open coding), and a cross-case analysis was performed (axial coding). Two researchers independently coded all interviews, using a mix of manual techniques and MAXQDA analysis software. The individual analyses were deliberately compared and discussed to achieve consensus on the meaning of emerging themes (check coding), and to increase the credibility of findings (Barbour, 2001; Meadows and Morse, 2001). Initial ideas about the data were compared with existing literature on fatigue and chronic illness.

Subsequently, focused coding took place in order to generate an overarching conceptual framework based on the open and axial codes (initial) (Charmaz and Belgrave, 2012; Corbin and Strauss, 1990). In the analytical phase, two research experts in the field of chronic illness, care, and gender were closely involved (T.A., P.V.). Re-analysing the range of codes and initial themes, and linking the empirical findings within wider theoretical literature on gender theory (Connell, 2012; Hammarström et al., 2014; Tannenbaum et al., 2016) allowed us to start developing concepts grounded in the empirical data. A gender perspective guided us in investigating social roles, responsibilities and the tasks participants referred to in the interviews, such as paid work and division of care, and to consider how this relates to fatigue. This cyclical process of moving back and forth between emerging theoretical concepts and data involved both inductive and deductive (abductive) strategies, which enabled both exploring and testing emerging explanations (Charmaz and Belgrave, 2012).

Quality and privacy procedures

To enhance the quality of our study, several procedures were followed (Barbour, 2001; Frambach et al., 2013). In addition to member checking and researcher triangulation (credibility), the iterative process of data collection and analysis enhanced dependability. Confirmability was established by documenting research steps and discussing findings with a diverse group of experts holding experiential knowledge and scientific knowledge in the field of chronic illness and care, health psychology and gender. Transferability was enhanced by explaining participant recruitment and presenting participant quotes.

The anonymity of participants was assured by securing access to all private and sensitive data. Data were stored in a secured project file on our internal medical university network. Access to the study data was restricted to team members, all of whom signed a privacy statement. Audio-taped records of interviews were removed after transcripts were completed. All identifying information pertaining to participants used in publications were coded and de-personalised, preventing identification of individual participants.

Findings

A total of 11 women and 12 men participated in this study. Their mean age was 55.4 years (range: 24–78). The majority of participants received HD treatment (n = 16), three participants received PD treatment and four participants had undergone kidney transplantation. Dialysis vintage varied between less than 1 year and up to more than 8 years. All participants held the Dutch nationality, two of whom had a non-Western background (see Table 1, ‘participant characteristics’). Several participants mentioned suffering from additional health problems such as coronary heart disease, anaemia and neuropathic pain.

Our findings reveal that patients find themselves within a continuous decision loop about how to organise daily life around persistent feelings of fatigue. A chronic lack of energy enforces an intrapsychological process of continuous consideration. Within this inner process, patients constantly question themselves about what they are capable of doing, what they feel they should do and what they desire doing. This inner process interacts with the outside world, and includes various contradictions and ambiguities. Three main themes arose: constantly assessing abilities, continuous pressure of normative beliefs and an ongoing search for purpose and meaning. In the final part of this section, we illustrate the interacting dynamics of these forces.

Constantly assessing abilities: what can I do?

Considering scarcity of time, energy and physical strength

Patients continuously internally assess what they are able or unable to do. From 1 day to the next, or even moment to moment, they take into account boundaries related to time, energy and overall physical strength. Boundaries are to a great extent defined by dialysis treatment, which encompasses a large part of daily life. The treatment itself and the burden of complementary tasks and obligations (e.g. travel time, medical regimen, checks and appointments, recovery) are time and energy consuming. Many participants indicated that dialysis treatment and frequent and enduring feelings of fatigue significantly restrict them from performing activities related to work, hobbies, social undertakings and household tasks:

I actually view dialysis as work to some extent … I have at least 32 hours of obligations during the week … Altogether that’s 40 hours a week I spend on being sick. And then there’s not much time left for doing nice things. (P4, 58, M)

Being at the hospital, the dialysis treatment itself … going home, getting in the car, coming home and directly getting into bed. And then getting up in the morning and feeling exhausted … Having … low blood pressure again because they extracted so much fluid … and then just not being able to eat in the morning and stand upright because of the dizziness. Yes, it [treatment] has a significant impact. (P11, 52, F)

In addition to the physical burden of treatment, participants often perceive mental and emotional strain when attending the dialysis ward. Patients experience contradicting situations, evoking contrasting emotional reactions. For example, participants described that, on one hand, being attached to a machine and perceiving the atmosphere as not being very stimulating indulges boredom and feelings of fatigue and passiveness. On the other hand, impactful stressors such as being confronted with acute situations cause anxiety and arousal:

It’s not a cheerful environment, the dialysis ward. […] It’s boring, everyone complains, everyone sleeps … […] You are just lying down. It is just boring, really boring. (P19, 52, F)

I saw two people dying. They died … lying next to me. It really shocked me. I could not sleep for nearly two months, because of the nightmares. (P21, 62, M)

Evidently, dealing with these emotional extremes drains people’s energy. The medical setting and the inescapable character of the dialysis ward offers little opportunity for distraction, and constantly confronts patients with their bodily signals and other patients’ medical conditions.

Decision-making and anticipation

A lack of resources forces patients to constantly make decisions. Participants try to take into account current levels of energy and potential future fatigue when considering participating or withdrawing from activities. They attempt to anticipate their abilities and consciously (re)distribute available energy:

I think that on dialysis days I feel more reluctant to make appointments. I keep in mind that I might be too tired. (P23, 60, M)

I plan well. This means I get up early in the morning and don’t plan more than one activity a day […] When I do too much at once … I start to feel fatigued and I have to get extra sleep in the afternoon. Ultimately it’s about the energy that’s available, and I have to distribute this the best way I can. In this way feelings of fatigue are limited. (P2, 56, F)

Fatigue is often perceived as vicarious and unpredictable, which makes it difficult to anticipate. Some participants illustrated feeling well after dialysis treatment in some instances, but feeling an overwhelming and uncontrollable need for sleep at other times:

The weird thing is, the day after dialysis can differ wildly … I might come home and fall asleep, right away … […] Then I wake up in my chair at 2:00 or 3:00 in the morning. Another time I might feel quite good … it … varies significantly. (P21, 62, M)

Explaining (in)abilities to others

Assessing abilities and distributing available energy for deciding on daily activities does not only affect the isolated individual, but takes place within their social contexts. This requires patients to not only estimate what they are capable of doing, but also to consider how to clearly communicate this to others in order to make them understand and adjust to their abilities. Several participants described how the experience of fatigue affected their inner considerations and interaction with others:

It feels as if my whole body … I feel worn out. I feel weary and a little grumpy … [The other day] someone called and asked me, ‘can you bring back the collection box to me? And I felt like, ‘Oh no, not now’. (P16, 44, F)

Just realising … I feel so tired. I had intended to go for a walk with someone, but will I be able to? And now what, you know.. Yes, then I start to ruminate a little, because this is not what I planned for. Then you have to change your attitude. In the worst case, I am unsure of whether to cancel the appointment or not. Because I would also feel bad about that … Yes, that does make me experience stress. (P2, 56, F)

Although people who are close to the participants often try to empathise, many participants expressed experiencing a lack of understanding when attempting to explain their limitations to others. This is often perceived as a source of stress and frustration, adding to feelings of fatigue:

It’s difficult to explain to others. You just lie down in a bed for four hours, how can this be so exhausting? … I can’t explain this to them, and at a certain point you stop explaining, because it just requires too much energy … And that’s what makes me tired … The lack of understanding is … energy draining. (P20, 46, F)

Continuous pressure of normative beliefs: what should or should I not do?

In addition to the assessment of abilities and estimation of what can be done, the feeling of what should be done is a strong force that gives direction to responses to fatigue and activities in daily life. This more subtle and implicit force comprises normative beliefs about what is ‘right’ or ‘wrong’, perceived responsibilities and beliefs about others’ expectations.

Disciplining the self

Many participants experience a moral pressure to do what is ‘right’, and since their time and energy have become scarce, their value and meaning had also changed. As such, they feel their amount of available time and energy should be used to its full potential. Negative judgements sounded regularly in the expressions of both men and women about themselves not doing anything. Wasting time and energy is perceived as a failure:

I don’t want to waste my time doing nothing. I already have less time available because of the dialysis. If I … sit down and do nothing or sit and gaze or sleep … I feel I wasted my day. (P23, 60, M)

I do watch a lot of television in the evening … and I feel this is a bit of a failure … […] I feel I should be doing useful things. (P11, 52, F)

Doing the ‘right thing’ requires discipline, but participants are often in doubt as to how to exert discipline. It requires discipline to set limits and prevent oneself from overdoing things. At the same time, it requires discipline to refrain from being passive and push oneself to stay active. Many of the participants try to find their own ways within this continuum:

I’m … a super active person. […] … I find it difficult to discipline myself [to hold back]. (P2, 56, F)

I have a museum card and a train card. I force myself to go somewhere once or twice a week. (P4, 58, M)

Finding a way to deal with feelings of being tired was also perceived as ambiguous. Although participants noted that additional sleep can provide instant relief, adverse effects were also reported (disturbed sleep/wake cycle and increased drowsiness). Some participants expressed that they consciously discipline themselves to stave off tiredness, describing this as a conflict between body and mind:

Sometimes I think ‘I feel tired, I feel tired …’ But I go cycling nonetheless. You need to push yourself a bit. (P9, 51, M)

The rhythm returns when I restrict myself from going to bed during daytime. I tell myself not to listen to my body and to not give in to going to sleep, even when I feel really tired … This feels like an inner conflict, in my mind: should I give in and listen to my body or refrain from doing so? (P17, 57, M)

One of the participants described that she had learned to interpret different fatigue signals. Now she knows when to hold back her activities and when it pays off to push a little further:

I learned to push my boundaries. You [might] think ‘feeling tired is part of the disease, I have to take it easy’. But you can also think, ‘I’m tired, but everyone can feel tired sometimes, so I push a little further to finish what I was doing’ … It’s…finding balance. Sometimes you can go on, but you also have to learn to recognise when you feel really tired and say, ‘ok, now I should step back and take some rest’. (P18, 24, F)

Meeting self-implied responsibilities and others’ expectations

The notion of what should or needs to be done is also shaped by self-implied responsibilities and beliefs about others’ expectations. These beliefs determine social roles in a subtle way, and often unconsciously direct the behaviours of participants, and consequently, how valuable energy is allocated. For example, for many women receiving dialysis treatment, it is self-evident to keep performing their usual load of household tasks, despite their limited abilities (in terms of time, energy and physical strength). Men, on the contrary, more often mentioned their partners taking over tasks at home:

Yesterday we went to a theme park with the grandchildren. They stayed over for the night, and then I take care of things. […] I got out of bed at 6:00 am, got myself something to eat, took out the dog, and then prepared breakfast for the kids and my husband. While they had breakfast, I went upstairs to have a shower. After that, I quickly vacuumed and then we left [for our day out]. (P14, 59, F)

Driven by normative beliefs about their responsibilities, participants also articulated their perspectives on what they should not do. For example, female participants in particular mentioned not wanting to be a burden to others, and therefore would not allow themselves to ask their children for support. Others even said they pretend that everything is going well to avoid being judged and rejected:

My daughter sometimes tells me: ‘mom, if I should do something for you, just ask’. Well, no way … I don’t know what will happen, maybe I will need help someday. I will accept help … then. But now, I won’t. It makes me feel too dependent on others, I absolutely don’t want that. (P14, 59, F)

Men more often referred to their responsibilities as linked to having paid work and to feelings of regret that they had lost their jobs. One of the participants described worries about not being able to meet this standard, and what others might think of him as a result:

Then I imagine what those people might think: ‘There he sits nicely in the sun, he does not have to work’. I feel that work, making a contribution to society, however small that contribution may be, I find that very important … If I had the choice, I would start working right away. (P17, 57, M)

Ongoing search for purpose and meaning: what do I value?

The third force within the internal process can be distinguished as the inner drive of what people value and desire doing. Despite persistent fatigue, participants long for fulfilment and connection with others. Purposeful encounters and joyful activities energise and distract from feelings of fatigue.

Experiencing joy and connection

Many participants mentioned that due to their illness and enduring feelings of fatigue, they had to give up activities they used to enjoy and that connected them with others, such as work and hobbies. As their worlds became smaller, spending time with loved ones, such as a partner, close friend, children or grandchildren, is what matters to many participants, as doing so energised them:

Last Sunday I felt fit. I went … swimming with my nephew, cousin and daughter. We played the whole day, did a lot of things … Yes, I felt fit the whole day. […] My family energises me. (P13, 37, M)

Having responsibility and purpose

Having responsibilities and purpose in life were mentioned as being helpful for preventing fatigue to prevail. One of the participants described how being a teacher again, albeit on a voluntary basis, provides him with self-worth and energy. Although men in particular often referred to the value of work, women more often mentioned that caring responsibilities contribute to the feeling of having a purpose and meaning:

I started a voluntary teaching job … I participate again, and that is what energises me … It energises me to feel of value to some extent … I’m taking part again, although I’m contributing on a small level … And to be meaningful, well, I still think that is, how will I call it … catalytic […] it helps to experience less fatigue. (P17, 57, M)

Although those who are close to participants were indicated as playing an important role in stimulating and encouraging people to undertake activities, it seems that the need for having purpose was not always well understood by those in participants’ social surroundings, or in healthcare:

At first, my mom agreed about me wanting a job, but she couldn’t totally understand why. She said, ‘Why do you want to work? Isn’t it too much of a burden to work full time?’ I then think, I’ll just try it … and if it doesn’t work out … it’s a pity and I’ll quit the job. (P18, 24, F)

What strikes me is that many care professionals stated, ‘Oh, are you still working?’ In other words, their perception was that it was unusual for me to still be working. They said, ‘You’ll probably stop working soon’. I remember this was often suggested when I just started dialysis. That’s odd right? Because people [dialysis patients] should rather be stimulated in undertaking things, to keep doing things. (P12, 62, M)

Three interacting forces: tensions between abilities, normative beliefs and values

Although the three forces were described separately, in daily life, they continuously interact (see Figure 1). Participants often perceive pressure and chaos when tensions, ambiguities and contradictions are experienced between their abilities, normative beliefs and values – a tiring process that intensifies feelings of fatigue:

It often happens that it becomes just one big chaos; this, that, and all other things that should be done. This confuses me and makes me feel extra tired … because all those things come to me all at once. (P12, 62, M)

Figure 1.

Interacting forces underlying fatigue response.

Due to normative beliefs related to performing specific tasks, the consequences of efforts can sometimes be overlooked. Several participants, in particular women, reported often feeling tempted to keep going once they feel to have the energy for activities. Consequently, they exceed their limitations and over exhaust themselves, and beliefs about what should be done interfere with setting healthy boundaries:

On Tuesdays, I do as much as possible household tasks. I get up at six in the morning and between roughly 11:00 to 11.30 I’m finished. And then I’m … exhausted. (P14, 59, F)

My son joined a carnival’s club and in winter he prepares the vans. All parents are invited to come and see the work. He asked me, ‘will you be there if you feel well?’ … I [made] sure [that I would be able] to come. But there are so many impressions all at once and a lot of noise, and … I feel, ‘I just don’t want this’, but I do it for him. [Then] he tells me ‘I appreciate you [being] there, but why didn’t you stay a little longer?’ Finding a right balance is hard to achieve. (P20, 46, F)

The outcome of negotiation between abilities and what is valued sometimes means crossing physical limits to enjoy a present moment or activity, and accepting the consequences of feeling worn out the following day. For others, the fear of crossing physical limits and anticipated feelings of fatigue prevailed, despite the desire to be active:

I often think, ‘its nice weather, I go out for a walk’ … and then I don’t take a tram, and walk to a museum and back home as well … I know … subconsciously, that I will pay for doing so later. But then I think, I can enjoy the weather today, tomorrow It will be raining so I don’t care, so I just do it regardless. (P2, 56, F)

I see other people enjoying cycling and I would like to do the same. But there’s something that keeps me from doing it … It often disappoints me … I would like to do so many things. But then I think that if I start doing them, it will probably go wrong. Probably. Maybe I should just try things more often. (P17, 57, M)

Discussion

This study aimed to gain a better understanding of how dialysis patients respond to symptoms of fatigue and its impact on daily life. Our findings revealed that participants find themselves within a continuous decision loop about how to organise daily life around persistent feelings of fatigue, and how to give meaning to life. This reaches further than simply a practical sense of decision-making, as these practical aspects are grounded within existential questions about one’s changing life course, identity and relation to others (Carel, 2013). A chronic lack of energy enforces an intrapsychological process, in which patients constantly question themselves about their capabilities, normative beliefs and values. Notably, this continuous cycle of conscious and unconscious consideration can be viewed as a demanding and tiring exertion in itself. This is poignant, considering the lack of resources dialysis patients already have to deal with. This study furthermore indicates how this inner process interacts with the cultural and social contexts of participants, informing gender-imposed roles, behaviours and beliefs. These insights shed new light on the meaning of ‘fatigue’ from a gender perspective, and on existing models of symptom perception and symptom management.

According to the symptom perception model (Pennebaker, 2012; Skelton and Pennebaker, 1982), felt sensations can be attributed to either somatic, psychological or environmental causes. The attribution of sensations determines how a symptom is interpreted, which in turn directs behaviour. Although this model is useful for understanding how dialysis patients perceive the symptom of fatigue, the model does not consider the subtler influences and inner struggles and ambiguities that underlie responses to fatigue. As revealed by our data, participants constantly assess what they are capable of doing, what they feel they should be doing and what they desire doing. These three interacting forces impose decisions such as whether to resist or give in to fatigue, to push or to hold back and to participate or withdraw from activities. This is often a chaotic process of trial and error, requiring discipline and negotiation with oneself and others. Hence, the complexity of interacting social, intrapsychological and existential dynamics underlying symptom perception and response is underexposed by the presumed linearity of the symptom perception model. In line with our findings, the revised symptom management model (UCSF-SMM) (Dodd et al., 2001) places more emphasis on the cyclical process of symptom experience, response and the evaluation of outcomes. This model, which has been applied to gain a better understanding of fatigue in adults with HIV (Loades and Kagee, 2019), does incorporate and postulate interactions between symptom experience, management strategies and perceived outcomes with regard to symptom status (such as change in severity, frequency or duration). The symptom management model (SMM) furthermore suggests that the cycle of symptom management interacts with personal and disease/health related factors, and is embedded within environmental conditions, incorporating social and cultural dimensions.

The experience of fatigue is not unique to patients receiving dialysis treatment. Severe fatigue is a common symptom associated with a wide range of chronic diseases such as multiple sclerosis, Parkinson’s disease, HIV, chronic heart failure, chronic fatigue syndrome, arthritis and cancer (Whitehead, 2009). In all illnesses accompanied by enduring feelings of fatigue, individual agency, or the ability to perform actions, fulfil roles and achieve goals, becomes limited (Carel, 2013). From this perspective, our conceptual model is relevant to all patients who experience a chronic lack of energy, separate from their chronic condition. It is likely that conscious and unconscious considerations, and self-questioning one’s capabilities, normative beliefs and values, capture a universal intrapsychological phenomenon. However, we wish to argue that the pressure perceived of various forces may differ among patients, depending on individual, social, and disease and treatment-related aspects. In light of our findings and current knowledge about CKD, several specific aspects relate to fatigue and the underlying pressure of forces, for those undergoing dialysis treatment.

In the first place, dialysis treatment is physically demanding and time-consuming, and comes with numerous medical and life style regimens. The overall burden and amount of illness work, including additional comorbidity, highly restricts the abilities of patients in the first place and places strong pressure on decisions as to what actions are feasible (see ‘abilities’ in Figure 1). In addition, participants often referred to the vicariousness and unpredictability of fatigue, which impedes anticipation and clear communication about abilities to others, which also contributes to perceived pressure. Second, the medical setting in which dialysis takes place, and literally being chained to a machine, puts emphasis on being a patient and enforces a focus on one’s physical condition and sensations. The medical environment and confrontations with acute situations through other patients allows for ample opportunity to worry about one’s own future perspectives. For those not eligible for transplantation, dialysis is life-extending; however, deterioration as a result of the progression of the disease is inevitable. In general, the average life expectancy is 5–10 years for patients receiving dialysis, and elderly patients’ prognosis is particularly poor (Foote et al., 2012; Thamer et al., 2015). In addition to grief about loss, this poor future perspective may intensify existential questions about one’s changing life course, identity and relation to others. Internalised norms and values that shape thoughts, beliefs and behaviours are deeply embedded in one’s cultural background and generation and are gender laden. For example, the Pre-War and ‘Silent Generation’ (born 1901–1940) share traditional norms and values that stress a solid work ethic, temperance, frugality and a desire for law and order (Diepstraten et al., 1999; Groot and Abma, 2018a). Given that a large proportion of dialysis patients are older, these norms and values may be reflected in their experience and response to fatigue and (subconsciously) increase tensions between what can be done and what should be done (force ‘abilities’ and force ‘normative beliefs’ in the model). In our findings, this is, for example, reflected by pursued discipline and negative judgements about ‘wasting time’, not allowing oneself to complain and rejecting support from others. Gender is enacted in everyday social practices (Connell, 2012) and differs for men and women. As gender shapes social roles, responsibilities and expectations (Lagro-Janssen, 2016), in our study, a gender perspective may explain which tasks and responsibilities men and women assign themselves, despite being severely fatigued. As argued by Gijsbers van Wijk and Kolk (1997), there are gender-related differences in the way men and women notice and deal with signals arising from their bodies, and subsequently perform their roles, regardless of symptoms. For example, a study on pain management (Samulowitz et al., 2018) showed that women more often struggle to manage pain and the multiple demands of their environment, as women feel responsible for their home and family, and for taking care of themselves. However, an overload of responsibilities may be an obstacle to their recovery. This is in line with our findings, as women more often exceeded their energy limits as a result of being driven by feelings of responsibility to take care of others or the household. Gender norms, gender identity and gender relations play a role in this, such as women’s internalised norms about who has to take care of children, the household and social networking. They often strongly identify with the role of ‘mother’ and ‘spouse’, and feel out of their comfort zone when they cannot perform this gendered identity. Gender relations imply that the environment also expects women to act in this way, and these aspects appear to remain largely invisible and undisputed in general. In our findings, men often referred to their loss of employment. Here, underlying emotions reflect a certain loss of identity. Gender structures are therefore not only cultural points of reference for daily life but also function as emotional and material constraints in person-to-person relationships (Connell, 2012). The conclusion can be drawn that the identities both men and women derive from certain roles are put under pressure by the fatigue they experience.

Based on our research findings, we suggest that, in light of social and cultural dimensions, gender aspects including gender norms, identities and relations should receive greater attention in research and healthcare.

In existing qualitative studies on the experience of fatigue among renal patients, gender does not receive significant attention. Although gender differences can be found, they are often not explicitly indicated as such. For example, Yngman-Uhlin et al. (2010) studied the experience of tiredness and related problems among PD patients, and found that patients perceived stress when they were no longer able to perform household tasks. Although the authors do not elaborate on this finding, it is plausible to accept that these emotions are particularly experienced by women. Picariello et al. (2018) report various differences between men and women in their findings, which illustrate that gender plays a role in how participants interpret and respond to fatigue. For example, women were presented as more willing to disclose problems and talk to others about fatigue, while men were described as being more reluctant to discuss complaints, as doing so would make those feelings worse. In line with our findings, the subject of social support also included gender aspects. The reluctance of asking for help was related to the desire to retain one’s identity, illustrated in the quote, ‘I’m a fully grown male who likes to think that people should be looking to you for help and guidance, and strength’ (Picariello et al., 2018: 12). This explicit reference to specific male characteristics such as ‘being strong’ and being a leader clearly illustrates how gender norms and identities affect cognition about oneself and others’ expectations, and the perceived appropriateness of behaviour. Picariello et al. (2018) also report that in particular, older, female participants did not wish to be a burden to others by complaining or being cared for. Despite noting these differences, the authors do not explicitly discuss apparent gender dynamics. However, gender sensitivity may help to better understand the far-reaching consequences of fatigue for both men and women, as well as their (unconscious) beliefs and responses.

Our findings may additionally help to better understand the inner process of continuous consideration underlying fatigue response. They shed new light on the interplay between the three distinguished forces (abilities, normative beliefs and values), and how these force people to negotiate, anticipate and discipline themselves in daily life. From a practical point of view, better understanding and recognition of this energy-demanding process can be valuable to patients. Health professionals can offer patients support in explicating this chaotic process, and help them to accept what is no longer possible, to better understand the impact of one’s own and others’ expectations, and encourage them to find purpose. We aimed to address the subtle, often invisible, yet deeply rooted gender dynamics as part of the interacting forces influencing how fatigue is perceived and responded to. Tailored gender-sensitive interventions can take into account gender norms, identities, and relations (Tannenbaum et al., 2016). We believe that raising awareness about these gender dynamics is an important first step for restoring people’s inner connections to their own embodied feelings, emotions, values, and needs.

A few study limitations should be addressed. Both patients receiving HD and PD treatment were included in this study. Although we know that severe fatigue is perceived regardless of dialysis modality (Bonner et al., 2010), it may be of value to further examine potential differences in the way patients receiving HD and PD respond to fatigue. Four participants in this study received a donor kidney and retrospectively reflected on their responses to dialysis-related fatigue. Whereas fatigue is often reported as a lingering health symptom following transplantation (Rodrigue et al., 2011), a recall bias may have occurred. A subsequent qualitative exploration into the experience of and response to fatigue after transplantation seems worthwhile, particularly since the burden of dialysis treatment is no longer present, and future perspectives may have changed.

Although it seems helpful for patients to gain an understanding of, and profit from a supportive network, this seemed not self-evident in our study. Relatives and professionals do not always seem to be aware of the counterproductive influence they exert on those dealing with severe fatigue. In order to gain a better understanding of perceived tensions, further investigation of the perspectives and experiences of both relatives and healthcare professionals is required. Finally, a gender perspective can also help to enhance understanding the consequences and responses to fatigue. However, further studies should also examine how gender intersects with various other sociocultural aspects such as age, ethnicity, nationality, educational background and socioeconomic status (Hankivsky and Christoffersen, 2008). Likely, these aspects also play a role in the perceived meaning and responses to fatigue.

Conclusion

This study contributes to a better understanding of the experience of fatigue and the internal process underlying fatigue response. Patients are forced into a continuous cycle of consideration, assessing their (physical) abilities and questioning their normative beliefs and values. Persistent fatigue does not only mean patients struggle with their limitations in terms of what they can do physically but also impact who they believe they can be. Recognition and improved understanding of the internal process underlying fatigue response can help to better address fatigue. More specifically, providing support in terms of how to regain purpose and value in life, despite being severely fatigued, can positively contribute to the QoL of dialysis patients.

Footnotes

Appendix 1 Declaration of conflicting interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This study was partly funded by the Dutch Kidney Foundation.

ORCID iD

Wieke E van der Borg

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