Fatigue in adults with post-infectious fatigue syndrome: a qualitative content analysis

Abstract

BackgroundFatigue is a major problem among individuals with post-infectious fatigue syndrome (PIFS), also known as chronic fatigue syndrome or myalgic encephalomyelitis. It is a complex phenomenon that varies across illnesses. From a nursing perspective, knowledge and understanding of fatigue in this illness is limited. Nurses lack confidence in caring for these patients and devalue their professional role. The aim of this study was to explore in-depth the experiences of fatigue among individuals with PIFS. A detailed description of the phenomenon of fatigue is presented. Increased knowledge would likely contribute to more confident nurses and improved nursing care.MethodsA qualitative study with open interviews was employed. In-depth interviews with patients were fully transcribed and underwent a qualitative content analysis. A maximum variation sample of 26 affected adults between 26–59 years old was recruited from a population diagnosed at a fatigue outpatient clinic.ResultsThe fatigue was a post-exertional, multidimensional, fluctuating phenomenon with varying degrees of severity and several distinct characteristics and was accompanied by concomitant symptoms. Fatigue was perceived to be an all-pervasive complex experience that substantially reduced the ability to function personally or professionally. A range of trigger mechanisms evoked or worsened the fatigue, but the affected were not always aware of what triggered it. There was an excessive increase in fatigue in response to even minor activities. An increase in fatigue resulted in the exacerbation of other concomitant symptoms. The term fatigue does not capture the participants’ experiences, which are accompanied by a considerable symptom burden that contributes to the illness experience and the severe disability.ConclusionsAlthough some aspects of the fatigue experience have been reported previously, more were added in our study, such as the dimension of awakening fatigue and the characteristic beyond time, when time passes unnoticed. We also identified trigger mechanisms such as emotional, neurological, social, financial, and pressure on oneself or from others. This in-depth exploration of fatigue in PIFS provides an overview of the dimensions, characteristics, and trigger mechanisms of fatigue, thus making better clinical observations, early recognition, improved communication with patients and more appropriate nursing interventions possible.

From good health to illness with post-infectious fatigue syndrome: a qualitative study of adults’ experiences of the illness trajectory

“…That the time to develop PIFS varied, was also found in the Giardia PIFS cohort [4]. However, low income seemed to add to the burden and forced participants to push themselves to work in order to survive, resulting in an emotionally draining situation and lack of rest, followed by symptom flare-ups and increased disability that may have hampered improvement [74]. …”

Factors impacting the illness trajectory of post-infectious fatigue syndrome: a qualitative study of adults’ experiences

“…During the downward phase, the participants were overwhelmed by their situation and lacked the ability to reflect on their own needs [ 42 ]. Thus, it took them a long time to accept being seriously ill and recognize that keeping up with their pre-illness lifestyles was counterproductive and that they had not handled their situations appropriately.…”

“…However, they orally renewed their consent to continue [ 71 ] as they wished to complete their story of living with the condition. Persons with PIFS may experience symptom flare-ups following any kind of exertion, have a low capacity limit and can become easily fatigued [ 42 ]. To reduce harm and minimize any inconvenience the interview room was dimly lit and quiet, and the interviewees sat in a recliner with foot stool and were offered light refreshments during the interview.…”

“…To reduce the societal and personal impact, we need not only knowledge of the fatigue experience itself [ 42 ], but also what factors impact PIFS in the first years of the illness trajectory. Models may enable health care providers to better understand how PIFS progresses over time and the ill persons’ own reactions to live with it [ 43 ].…”

Subacute fatigue in primary care – two sides of the story

“…A review of studies from around the world suggests the average prevalence of chronic fatigue is 10% and that of chronic fatigue syndrome is 1% of the population (Son, ). The pervasive and fluctuating nature of chronic fatigue and the associated physical and emotional symptoms and reduction in capacity have been documented (Storkmorken, Jason, & Kirkevold, ), as have the difficulties of it being an unknown illness and ‘losing’ elements of life (Jelbert, Stedmon, & Stephens, ). This highlights the value of preventing acute fatigue becoming chronic.…”