Cureus. 2026 Apr 24;18(4):e107667. doi: 10.7759/cureus.107667. eCollection 2026 Apr.
ABSTRACT
Heart failure is a long-term progressive disease affecting millions of people worldwide, imposing physical, psychological, and social burdens on patients and their families. Symptom recognition, which refers to awareness and understanding of bodily changes, is a key aspect of self-care; however, how patients and their families live with symptoms and deal with them in their daily lives remains unclear. This review aimed to summarise the current knowledge on how patients with heart failure and their caregivers experience, notice, and manage symptoms in daily life, and to identify the knowledge gaps that make timely and appropriate care difficult. This scoping review followed the frameworks of Arksey and O'Malley and the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews guidelines. Four databases (PubMed, CINAHL, PsycINFO, and Ichushi-Web) were searched for peer-reviewed studies published between 2010 and 2025. Studies focusing on the symptom experiences of adult patients with heart failure and their caregivers were included. Two reviewers independently screened and extracted the data, which were organised into main themes. Of the 2,057 studies, 19 were included (14 qualitative, three cross-sectional, and two mixed-method). Findings were grouped into five categories: symptom experiences, in which breathlessness, tiredness, and swelling were often accepted as normal; detection and barriers, in which vague or small changes were often missed; family and caregiver roles, in which families sometimes encouraged early care-seeking but sometimes delayed it; management factors, including cognition, family support, healthcare complexity, and treatment burden; and knowledge and system gaps, including low body awareness, delays in severe cases, and limited attention to contextual factors. Managing heart failure symptoms depends not only on medical knowledge but also on psychological, social, and contextual factors. Interventions should go beyond education by correcting normalisation, reducing the treatment burden, and combining human support with technology. Building multilayered strategies that link knowledge and action is essential for reducing readmissions and improving quality of life.
PMID:42186616 | PMC:PMC13198936 | DOI:10.7759/cureus.107667