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

Abstract Background Municipal drinking water contaminated with the parasite Giardia lamblia in Bergen, Norway, in 2004 caused an outbreak of gastrointestinal infection in 2500 people, according to the Norwegian Prescription Database. In the aftermath a minor group subsequently developed post-infectious fatigue syndrome (PIFS). Persons in this minor group had laboratory-confirmed parasites in their stool samples, and their enteritis had been cured by one or more courses of antibiotic treatment. The study’s purpose was to explore how the affected persons experienced the illness trajectory and various PIFS disabilities. Methods A qualitative design with in-depth interviews was used to obtain first-hand experiences of PIFS. To get an overall understanding of their perceived illness trajectory, the participants were asked to retrospectively rate their functional level at different points in time. A maximum variation sample of adults diagnosed with PIFS according to the international 1994 criteria was recruited from a cohort of persons diagnosed with PIFS at a tertiary Neurology Outpatient Clinic in Western Norway. The sample comprised 19 women and seven men (mean age 41 years, range 26–59). The interviews were fully transcribed and subjected to a qualitative content analysis. Results All participants had been living healthy lives pre-illness. The time to develop PIFS varied. Multiple disabilities in the physical, cognitive, emotional, neurological, sleep and intolerance domains were described. Everyone more or less dropped out from studies or work, and few needed to be taken care of during the worst period. The severity of these disabilities varied among the participants and during the illness phases. Despite individual variations, an overall pattern of illness trajectory emerged. Five phases were identified: prodromal, downward, turning, upward and chronic phase. All reached a nadir followed by varying degrees of improvement in their functional ability. None regained pre-illness health or personal and professional abilities. Conclusions The needs of persons with this condition are not met. Early diagnosis and interdisciplinary rehabilitation could be beneficial in altering the downward trajectory at an earlier stage, avoiding the most severe disability and optimising improvement. Enhanced knowledge among health professionals, tailored treatment, rest as needed, financial support and practical help would likely improve prognosis

When the hearts are sick: An evaluation of comprehensive secondary prevention program for heart patients, where changes in physical and mental health, lifestyles, and the patients' satisfaction with the health service given are in focus

Research questions: 1) Does physical and mental health improve in the first 6 weeks of the rehabilitation period? 2) Will the patients get a healthier lifestyle in the early rehabilitation phase? 3) Are the patients satisfied with the health service given at the Heart Outpatient Clinic? Design: Goal based evaluation research. Exploratory, quantitative pre-post-post study with semi structured self-reported questionnaires. Sample: The population was patients enrolled in a clinic's comprehensive prevention program for heart patients. The sample was a nonprobability single selected intervention group of 48 selected heart patients (31 men and 17 women) with cardiac infarction, angina pectoris and heart failure. Age ranged from 39 to 75. Mean age was 61,9. Stand. Dev. 9,31. The inclusion was consecutive. Results: 1) The results showed a significant improvement in both physical and mental health the first six weeks of the rehabilitation period. The improvement in physical health occurred mainly in the last three weeks, while the improvement in mental health occurred mainly in the first three weeks. 2) Significant changes in lifestyle were made in the following areas; physical activity and diastolic blood pressure increased, daily consume of cigarettes decreased, and the patients experienced a decreased amount of personal stress. The results showed no significant changes in body weight, alcohol consumption or systolic blood pressure. 3) The patients were in general very satisfied with the rehabilitation service given, but the findings suggest that there is room for improvement in the following areas; education (information, counselling and teaching), caring, communication and cooperation, motivation, use of written goals and plans for lifestyle changes, information on patients' rights, telephone support, discharge planning, continuity in doctor follow-up and contact with dietician, psychologist and physiotherapist. 4) Possible causes cannot be determined due to lack of control group. Some factors, such as gender, age, level of education, diagnosis, contact frequency with own children and friends, and health related opinions, seem to have had influence on the changes which took place. Implications for the rehabilitation team: Develop a standardized system to secure optimal rehabilitation. Include next of kin better in discharge planning, and the rehabilitation process. Show video films with a nurse present. Strengthen the patients' motivation for changes in lifestyle. Offer telephone follow up after discharge. Compose written goals and plans for life styles changes in cooperation with the patients. Give the patients a workbook including all relevant information. Improve communication, cooperation, and care. Improve patient education, and continuity in doctor follow-up. Offer contact with other health professionals

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

Background Fatigue 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. Methods A 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. Results The 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. Conclusions Although 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

Liquidambar styraciflua

Liquidambar styraciflua en bosque de niebla

Additional file 3: of From good health to illness with post-infectious fatigue syndrome: a qualitative study of adults’ experiences of the illness trajectory

The interview guide. (XML 237 kb

Additional file 2: of From good health to illness with post-infectious fatigue syndrome: a qualitative study of adults’ experiences of the illness trajectory

Bell’s Disability Scale. (PDF 62 kb

Additional file 1 of Factors impacting the illness trajectory of post-infectious fatigue syndrome: a qualitative study of adults’ experiences

Bell’s Disability Scale. (PDF 65 kb