Social and existential needs of patients with heart failure and their informal caregivers in europe: a RAPHAEL study
E Brave, C Letras, D Stefanika-Wojtas, D Kurpas, M Kling Wallin, S Yardley, R Benchekroun, J Celutkiene, D Marelli, J Julia-Torras, P Larkin, E De GraafAbstract
Background
Heart failure has a multidimensional symptom burden that profoundly impacts the quality of life of patients and informal caregivers. As its trajectory progresses, the needs of patients and informal caregivers often shift from medical to social, emotional, and existential domains. However, the needs in these domains remain insufficiently understood within heart failure.
Purpose
This study explores the social and existential needs and concerns of patients and informal caregivers living with heart failure across Europe. The aim is to clarify how these needs and concerns can be better addressed within heart failure care. The study forms part of the RAPHAEL project, an initiative developing, implementing, and evaluating a multidimensional palliative care approach to heart failure care across Europe.
Methods
Researchers conducted a generic qualitative study across nine European countries. Patients’ symptom burden was assessed using the USD-4D. In-depth, semi-structured interviews with patients and informal caregivers explored their social and existential needs and concerns. The analysis comprised two layers of thematic analysis. Firstly, a national analysis in the native language, using an adapted version of the Qualitative Analysis Guide of Leuven (QUAGOL). Secondly, an international analysis of translated themes and quotes, identifying overarching patterns or differences across countries.
Results
Findings suggest that living with heart failure requires constant negotiation between physical limitations, personal identity, and social relationships. The progressive and unpredictable loss of function fosters dependency, reducing autonomy and control. Patients described a gradual loss of social roles, reducing their sense of personal value, identity, and dignity. The "invisible" nature of heart failure leads to a lack of understanding in social environments, disrupting social connections, emotional support, and moments of normality beyond the illness.
Conclusion
Our findings bring a nuanced understanding of social and existential needs in heart failure. These insights guide the development of a multidimensional palliative care intervention within the RAPHAEL project.