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Living With Symptom Experiences in Patients With Heart Failure: A Scoping Review
Tomohide Fukuda1, Junichi Hosogaya2, Yoshie Imai3
1Faculty of Nursing, Musashino University, Tokyo, JPN.
Cureus
|May 26, 2026
Summary
Patients with heart failure often normalize symptoms like breathlessness and fatigue, delaying care. Effective management requires addressing psychological, social, and contextual factors beyond medical knowledge.
Area of Science:
- Cardiology
- Nursing
- Psychology
Background:
- Heart failure (HF) is a chronic, progressive condition impacting millions globally.
- Symptom recognition is crucial for self-care in HF, yet patient and family experiences remain poorly understood.
- Existing knowledge gaps hinder timely and effective HF symptom management.
Purpose of the Study:
- To synthesize current knowledge on how HF patients and caregivers experience, perceive, and manage symptoms in daily life.
- To identify critical knowledge gaps impeding optimal HF care.
- To inform the development of improved patient and caregiver support strategies.
Main Methods:
- A scoping review following Arksey and O'Malley and PRISMA-ScR guidelines.
- Searched four databases (PubMed, CINAHL, PsycINFO, Ichushi-Web) for studies published 2010-2025.
- Included 19 studies (14 qualitative, 3 cross-sectional, 2 mixed-methods) on adult HF patients and caregivers.
Main Results:
- Patients frequently normalize symptoms (breathlessness, fatigue, swelling), leading to missed detection of changes.
- Family and caregiver roles in care-seeking behavior are complex, sometimes delaying, sometimes promoting, intervention.
- Management is influenced by cognition, support systems, healthcare complexity, and treatment burden, with significant knowledge and system gaps identified.
Conclusions:
- Effective HF symptom management necessitates integrating psychological, social, and contextual factors with medical knowledge.
- Interventions should address symptom normalization, reduce treatment burden, and combine human support with technology.
- Multilayered strategies linking knowledge and action are vital for reducing readmissions and enhancing quality of life in heart failure patients.
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