Perceptions of fatigue and fatigue management interventions among people with multiple sclerosis: a systematic literature review and narrative synthesis

Background/Aims Fatigue is the most common symptom of multiple sclerosis. Evidence supports the effectiveness of fatigue management interventions for people with multiple sclerosis. This review aimed to identify how people with multiple sclerosis experience fatigue and to examine their perceptions of fatigue management interventions. Methods The review was conducted systematically, searching the following electronic databases: AMED, CINAHL Complete, eBook Nursing Collection, ERIC, Health Source: Nursing/Academic Edition, MEDLINE, APA PsycArticles, and APA Psyclnfo for original peer-reviewed empirical research published in English between January 2000 and June 2020. Qualitative and mixed-methods studies that captured the perspectives of people with multiple sclerosis on their fatigue and/or their perceptions of fatigue management interventions were included. A narrative synthesis was used to synthesise the findings. Results A total of 23 qualitative and eight mixed-methods studies were extracted comprising a total of 662 people with multiple sclerosis (relapsing remitting n=293; secondary progressive n=129; primary progressive n=73; relapsing progressive n=3; benign n=2; fulminant n=1; type of multiple sclerosis not reported n=161). Fatigue was perceived by people with multiple sclerosis as a debilitating symptom of the condition and which they felt impacted adversely on their lives. A lack of understanding from others about multiple sclerosis fatigue was challenging for people with multiple sclerosis. People with multiple sclerosis valued the physical and psychosocial-based content of fatigue management interventions and felt fatigue management interventions enabled them to legitimise their fatigue and feel more in control of their fatigue. Conclusions From the perspective of people with multiple sclerosis, fatigue is a central and debilitating feature of the everyday experience of living with multiple sclerosis. Research on the potential of fatigue management interventions to foster control for people with multiple sclerosis to help them manage their fatigue is warranted. Healthcare professionals should consider how they can empower people with multiple sclerosis to educate others about their fatigue. Some evidence being generated for practice might not be sufficiently contextualised to different forms of multiple sclerosis.