Abstract
Introduction: No study has systematically examined stroke survivors’ challenges with fatigue. We use the Adaptive Leadership Framework for Chronic Illness (ALFCI) to synthesize what survivors’ challenges are with fatigue and how they respond or collaborate with others to achieve poststroke fatigue adaptation. Methods: We searched PubMed, CINAHL, Embase, and PsycInfo using PRISMA-ScR guidelines, gathering studies between 2012 and 2020. Qualitative studies or qualitative findings in mixed-method studies were included if they described stroke survivors’ (cerebral infarction, TIA, and brain hemorrhage) experiences with fatigue and/or care partners’ experiences to help survivors adapt to fatigue. We excluded studies which were not full-text English and did not report empirical data (e.g., literature review or editorial). We used interpretive synthesis to analyze the published qualitative data. Results: Of 714 papers identified, we retained 25 papers (22 qualitative and 3 mixed-method studies). Using ALFCI to synthesize data, we found that survivors with fatigue had many types of adaptive challenges. Fatigue made them less productive and it affected their cognitive, language, and physical functions, as well as sleeping patterns and social activities. To respond to these challenges, survivors did adaptive work such as changing mindset, using energy-conservation strategies, restructuring routines, and exercising. Care partners, health professionals, and others showed leadership by helping survivors adapt to fatigue by giving information about fatigue, assessing survivors’ fatigue levels, reducing survivors’ workload, and collaboratively negotiating for new daily routines. However, some studies indicated survivors needed fatigue education from professionals. No study interviewed care partners to examine their experiences helping survivors adapt to fatigue. Conclusions: Survivors had many types of challenges and responses towards fatigue. Care partners and others showed leadership by facilitating survivors with fatigue adaptation. Future studies can identify targets for interventions to address poor adaptation to fatigue and also explore care partners’ perspectives.
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