‘It's when you're not doing too much you feel tired’: A qualitative exploration of fatigue in end‐stage kidney disease

Abstract

BackgroundFatigue is commonly experienced in end‐stage kidney disease (ESKD) patients. In order to develop patient‐centred psychosocial interventions to help patients manage fatigue symptoms, a more in‐depth understanding regarding the experience of fatigue is needed.ObjectiveThe objective of this study was to explore renal patients’ experiences of fatigue, across renal replacement therapy (RRT) modalities.MethodsTwenty‐five in‐depth semi‐structured interviews were conducted. Interviews were audio‐taped, transcribed, and analysed using inductive thematic analysis.ResultsMain themes included the strong role of the illness and treatment in the aetiology of fatigue. Two contrasting streams of illness–fatigue interpretations emerged: catastrophizing versus normalizing. Participants emphasized the importance of having a sense of purpose in facilitating active management of fatigue. Many participants described the consequences of fatigue on their functioning. Low mood, frustration, and anger were common emotional consequences of fatigue. Three dominant fatigue management strategies emerged: one related to accommodation of activities around fatigue, another on increasing activities to counteract fatigue, and the third one revolved around self‐compassion. Social support emerged as an important aspect of the fatigue experience, serving as a source of motivation, yet participants were wary of becoming a burden to others.ConclusionFindings identify casual attributions, behavioural and emotional reactions, management strategies, and facilitators of active management of fatigue in ESKD. Untying fatigue from the illness and treatment may help patients to develop alternative less catastrophic perceptions of fatigue, increase their perception of control over fatigue, and facilitate active fatigue management. Statement of contribution What is already known on this subject? Fatigue is persistent and debilitating in end‐stage kidney disease (ESKD), with no consistent treatment model.Promising evidence is available for psychological fatigue interventions in other chronic conditions.There is a gap in studies looking at the fatigue experiences of patients with ESKD across renal replacement therapies. What does this study add? Fatigue is not inherently negative, but shaped by patients’ beliefs and behaviours.Findings provide novel insights, for example, on the important role social support seems to play in fatigue.An in‐depth understanding of fatigue may help to inform a future patient‐centred intervention in ESKD.

The impact of living with long‐term conditions in young adulthood on mental health and identity: What can help?

“…Twelve out of 15 participants described experiencing negative mood and in some cases clinically diagnosed depression and suicidal thoughts as a result of their condition/s, and eight reported experiencing anxiety and fear for the future. This complements and expands on earlier findings with predominantly older adults and/or amongst individuals with specific individual LTCs . Nine out of 15 participants made comparisons between their former ‘well’/’healthy’ self and their current ‘ill’/‘sick’ self, with longing for their past self and grieving lost parts of their identity (although it is important to note that this sub‐theme is only applicable to young adults diagnosed from birth/infancy, perhaps excluding for example congenital illnesses such as cystic fibrosis, where there is no prior period of ‘wellness’ or perceived ‘normality’).…”

“…This also expands on previous research which has identified reaching acceptance of new/altered identities as important for mental health, and was also seen as a long and difficult process that required time and reflection (eg Refs). The other suggestions made by participants in the present study are less present in the existing literature, although some reference has previously been made to the value of positive thinking (eg Refs).…”

“…The impacts of living with LTCs have been identified predominantly through research with older populations. Research has revealed that kidney disease, diabetes and various conditions are associated with depression, anxiety and fear for the future. One of the postulated reasons for these negative mental health impacts concerns the change in identity that results from LTCs.…”

A prospective study of fatigue trajectories among in‐centre haemodialysis patients

“…The role of damage beliefs in fatigue-related functional impairment was also evident in the crosssectional data (Chilcot et al, 2016). Believing that fatigue is a sign of damage appeared particularly salient to renal patients and has been previously reported in a qualitative study, where patients often struggled to dissociate fatigue from the experience of the illness and treatment (Picariello et al, 2017a(Picariello et al, , 2017. Believing that fatigue is a sign of damage appeared particularly salient to renal patients and has been previously reported in a qualitative study, where patients often struggled to dissociate fatigue from the experience of the illness and treatment (Picariello et al, 2017a(Picariello et al, , 2017.…”

Self-Management Program for People with Chronic Kidney Disease in Vietnam: A Pragmatic Randomised Controlled Trial

“…The lack of debilitating symptoms may mean that people are less inclined to believe that they have CKD (Braun, Sood, Hogue, Lieberman, & CopleyMerriman, 2012;Picariello, Moss-Morris, Macdougall, & Chilcot, 2017a), and could reduce their engagement in self-management behaviours, particularly those related to lifestyle modifications. Providing support is therefore essential to assist people in knowing what CKD is, how to identify early symptoms, and how to take steps to manage their disease.…”