The multidimensional needs of chronic heart failure patients and caregivers from a dyadic perspective: a scoping review

Abstract

Despite advances in medical and device management, people with chronic heart failure continue to experience persistent physical and non-physical symptoms. Consequently, heart failure guidelines advocate for the early integration of palliative care. Nevertheless, the multidimensional needs of patients and their informal caregivers remain insufficiently examined. This scoping review aimed to explore the physical and non-physical needs of adults living with chronic heart failure, along with those of their informal caregivers, across Europe. Following Arksey and O’Malley’s framework, a systematic search of PubMed, EMBASE, PsycINFO, CINAHL, Cochrane Library, and Web of Science was undertaken. Eligible studies, published January 2000-January 2024, reported on the multidimensional needs of adult patients and their informal caregivers in Europe. Findings were meta-aggregated to identify dyad-level mechanisms. Across the 34 included studies, involving 886 patients and 525 caregivers, both groups reported several multidimensional burdens. Patients commonly experienced physical symptoms, alongside significant psychological, social-financial, and spiritual/existential concerns. Informal caregivers faced considerable physical, emotional, and socio-financial strain, with their quality of life closely linked to the patient’s condition. Although most studies were qualitative and did not formally analyse dyadic interdependence, co-occurrence across reports allowed identification of shared dyad-level concerns, including shared prognostic uncertainty, role renegotiation, system navigation burden, and existential adaptation. Mapping these issues supports a needs-based rationale for earlier and more structured integration of palliative care within routine chronic heart failure management.