The experience of fatigue and strategies of self-care among persons with multiple sclerosis

doi:10.1016/S0897-1897(97)80023-7

Applied Nursing Research

Volume 10, Issue 1, February 1997, Pages 2-10

https://doi.org/10.1016/S0897-1897(97)80023-7 Get rights and content

Fatigue is one of the most common and least understood symptoms of many chronic and disabling conditions. This qualitative study used a convenience sample (N = 13) of individuals with multiple sclerosis (MS). A semistructured interview guide was used to elicit a description of the experience of fatigue, its perceived antecedents, and the self-care strategies used to manage it. Data were gathered during two 90 minute interviews. Five themes were identified that describe the experience of fatigue for persons with MS. Categories of self-care strategies included energy conservation, recharge efforts, enhancing resistance to fatigue, and temperature control. Further research is needed to explore the effects of specific interventions in the management of fatigue.

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Cited by (56)

The experience of fatigue in neurological patients with Multiple Sclerosis: a thematic synthesis
2020, Physiotherapy (United Kingdom)
To identify the experiences that result from MS-related fatigue (MSRF) through a systematic review and thematic synthesis of qualitative literature.
The thematic synthesis was undertaken in three stages: (1) a systematic review of the literature, searching relevant databases from their inception to March 2016. (2) A critical appraisal of included studies, and (3) a double blind 2-phase synthesis of results was undertaken.
Participants were included from articles using primary and secondary care settings.
The synthesis included nine articles that incorporated a total of one hundred and fifty two participants (103 females and 49 males) in the review.
No articles were excluded following critical appraisal. Two major themes were synthesised: (1) biopsychosocial experiences of fatigue, which illustrated the physical, cognitive and social challenges patients experience and (2) experiences that alter the impact of fatigue including the strategies individual employ to help manage fatigue. These major themes were further split into five subthemes.
Only the most common experiences of MSRF were identified. Findings did not break down results by key demographics e.g. disease type. Only English language studies were included.
Physiotherapists are able to support the management by: (a) having a greater understanding of MSRF and (b) being able to help patients manage the factors that influence it.
Increasing Physical Activity and Participation in People With Multiple Sclerosis: A Review
2016, Archives of Physical Medicine and Rehabilitation
Multiple sclerosis (MS) is a chronic progressive disease of the central nervous system (CNS) affecting >2.5 million people worldwide. Damage to neurons in the CNS causes various sensorimotor and cognitive symptoms, such as fatigue, pain, spasticity, memory deficits, and impairment of mobility. Until the late 1990s, it was believed that symptoms of MS would be worsened with physical exertion and people with MS were encouraged to limit physical activity and exertion. Not only has emerging evidence suggested that physical activity, including exercise, is safe for people with MS, there is also evidence that at least some of the disability that occurs after MS is due to secondary deconditioning from the sedentary lifestyle adopted because of the symptoms of MS, not just CNS damage alone. Therefore, not only is physical activity safe, it is also required for maintaining function and health in people with MS. The purpose of this article is to review the unique physical and social barriers to physical activity in people with MS, including those with moderate to severe disability who use a wheelchair or scooter for mobility. We will discuss how existing guidelines for physical activity may not meet the needs of people with MS and present evidence-based considerations for promoting physical activity in people with MS. Ultimately, the goal is to overcome the barriers to physical activity and improve health, participation, and quality of life in people with MS.
The Experience of Fatigue Across Long-Term Conditions: A Qualitative Meta-Synthesis
2016, Journal of Pain and Symptom Management
Citation Excerpt :
The findings in this category relate to the pathway of the fatigue in terms of presence, variation in fatigue over time, and onset. In 25 studies, fatigue was described as being ever present, with participants constantly aware of the presence of fatigue and the impact on daily life:13,14,17,20,23,25,30,36–38,40,41,45–47,51,53,57,58,60,61,63,67 Even breathing seems to drain all my energy.16
Fatigue is a common and debilitating symptom associated with many long-term conditions and is reported to cause significant levels of distress for those individuals. There is a substantial body of literature related to the nature of fatigue; however, this has not been drawn together and compared across conditions.
The aim of this review was to synthesize data on the nature of fatigue across long-term conditions.
The review was designed as a qualitative meta-synthesis and followed the Joanna Briggs Institute guidelines for synthesizing qualitative research. The following databases were searched for the period January 1980 to January 2016, Ovid (Medline, Embase, CINAHL, and PsycINFO) and manual searching from the reference lists from articles identified by electronic search. Fifty-seven studies were included in the review, and findings related to the nature of fatigue were extracted and findings meta-synthesized.
The perceived nature of fatigue across long-term conditions was encompassed in one synthesis; the fatigue experience is without precedent, with four categories: a different fatigue to any experienced before, the intensity of fatigue is overwhelming, the trajectory of fatigue, and impact on sleep and sleep disturbance. Just over half of the participants in the included studies were diagnosed with cancer. Patterns in the experience of fatigue by condition were found for cancer-related fatigue and post-stroke fatigue where data were able to be synthesized.
Although similarities in the nature of the fatigue experienced were found across conditions, differences were also evident and could be mapped for cancer-related fatigue and post-stroke fatigue. Further qualitative research on the experience of fatigue across a wide range of chronic conditions would further contribute to understanding similarities and differences across conditions and inform both research and practice in relation to assessment and management.
Exploring the experience of fatigue in people with Charcot-Marie-Tooth disease
2012, Neuromuscular Disorders
Citation Excerpt :
There were descriptions of feeling refreshed and better following exercise indicating an alleviation of symptoms. This is a similar experience in stroke and MS [10,11] where studies of exercise training have shown some improvement in fatigue symptoms [14,15]. In a study of interval training in CMT, fatigue during the cycling task reduced with training [16].
This qualitative study explored the phenomenon of fatigue for people with Charcot–Marie–Tooth disease, while acknowledging the triggers, impact and strategies people have developed to manage this symptom in daily life. A phenomenological approach was used to explore the experience of fatigue. Participants were recruited from a support group. Twenty-five people participated in three focus groups. Group interviews were tape recorded and independently transcribed. Transcripts were coded and emerging themes were highlighted. Four areas were explored and themes identified within them. Fatigue descriptions: energy depletion, overwhelming nature, variations in fatigue and fatigue as an abnormal experience; triggers of fatigue: activity, stress and mental concentration; impact of fatigue on: physical abilities, mood, guilt and frustration, isolation and concerns about how they were perceived by others; strategies to manage fatigue: coping with symptoms; planning ahead; deception; and reducing symptoms. This study revealed that fatigue is an overwhelming experience for people with Charcot–Marie–Tooth disease that impacts on many areas of their lives. People may require significant adjustment that could be facilitated by fatigue management approaches. In addition, exercise may have potential to reduce the symptoms of fatigue in some people.
Self care programs and multiple sclerosis: Physical therapeutics treatment - literature review
2011, Annals of Physical and Rehabilitation Medicine
Citation Excerpt :
Douze études ont été publiées sur le thème ETP « conservation d’énergie » dans la SEP (trois de niveau 2, trois de niveau 3 et six de niveau 4). Une première étude en 1997, menée par Stuifbergen et al., a établi chez 13 patients SEP, un état des lieux des stratégies d’adaptation mises en place pour lutter contre la fatigue [81]. Les patients ont indiqué la conservation d’énergie comme une des premières stratégies mises en place dans la vie quotidienne.
To clarify the therapeutic education program impact with multiple sclerosis patients, literature review. Highlight contents and efficacy.
A non-systematic review on Medline, PubMed and Cochrane library databases from 1966 to 2010 using the following keywords: “multiple sclerosis”, “self-care”, “self-management” and specific symptoms keywords. Clinical trials and randomized clinical trials, as well as literature reviews published in English, French and German will be analyzed.
Counseling is a part of the non-pharmacological management of chronic illnesses such as multiple sclerosis. Symptoms’ diversity and the different clinical forms limit standardized programs of self-care management, applicable to patients. In the literature review, counseling programs have often low metrology. A behavior change with patients and medical staff could exist. To empower the patient, to reduce symptoms’ impact and to improve treatment access are the aims of educational therapy.
Therapeutic education program for multiple sclerosis patients could progress with their standardization and assessment, for each sign. To promote the educational therapy of multiple sclerosis patients, a specific training for medical staff, as specific financing are necessary.
Mise au point sur les différents programmes d’éducation thérapeutique du patient (ETP) retrouvés dans la littérature, chez des sujets ayant une sclérose en plaques. En vérifier le contenu et leur efficacité si elle a été étudiée.
Revue non systématique de la littérature par recherche dans les bases de données Medline, PubMed et Cochrane Library de 1966 à 2010. Les mots clés étaient « multiple sclerosis », « self-care », « self-management » puis des mots clés adaptés au symptôme étudié. Les essais cliniques et les études en langue anglaise, française et allemande, ainsi que les revues de la littérature et les recommandations pour la pratique sont analysés.
L’ETP est indispensable dans cette pathologie chronique. La multiplicité des symptômes et la diversité des formes cliniques limitent l’existence d’éducation « standardisée », applicable à chaque patient. Les programmes d’ETP retrouvés dans la littérature sont souvent de qualité méthodologique discutable. Un changement de comportement des soignants et des soignés a parfois été constaté. L’éducation a pour but d’autonomiser le patient, de diminuer le retentissement des symptômes, d’améliorer leur accès aux traitements.
L’ETP des patients ayant une SEP pourrait être améliorée par la standardisation et l’évaluation de programmes, spécifiques à chaque symptôme. Afin de promouvoir la prise en charge éducative des patients atteints de SEP, une formation spécifique des professionnels de santé, ainsi que des financements adaptés sont nécessaires.
Seeing the Invisible: A Photovoice Exploration of Living With and Managing the Invisible Symptoms of Multiple Sclerosis
2024, Clinical Psychological Science

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: Supported by the Biomedical Research Grant, The University of Texas at Austin School of Nursing.

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Original articleThe experience of fatigue and strategies of self-care among persons with multiple sclerosis

Annals of Neurology

Archives of Physical Medicine & Rehabilitation

General Hospital Psychiatry

Fatigue in postpolio syndrome

Archives of Physical and Medical Rehabilitation

Exploratory designs

The impact of arthritis on quality of life

Nursing Research

Symptomatic fatigue in multiple sclerosis

Archives of Physical Medicine & Rehabilitation

Fatigue in multiple sclerosis: Guidelines for nursing care

Rehabilitation Nursing

Fatigue in multiple sclerosis

Archives of Neurology

Naturalistic inquiry

Multiplying the health potential of the person with multiple sclerosis

Health Values

Original article
The experience of fatigue and strategies of self-care among persons with multiple sclerosis