Exploring Hope in Patient-Caregiver Dyads Living with Advanced Chronic Disease in Portugal: A Phenomenological Study

Background/Objectives: Advanced chronic diseases significantly compromise the quality of life of patients and their family caregivers due to the high symptom burden, psychosocial distress, and increasing care dependency. Despite recommendations for the early integration of these individuals into Palliative Care (PC), understanding hope as a resource for adaptation to the illness trajectory remains limited. This study aimed to describe the lived experience of hope among dyads consisting of individuals with advanced chronic disease and their family caregivers. Methods: A qualitative descriptive phenomenological design, grounded in Amedeo Giorgi's methodology, was used. Data were collected through semi-structured interviews with 13 patient-caregiver dyads living with advanced chronic obstructive pulmonary disease or advanced heart failure. Data were analysed following the procedures of descriptive phenomenological analysis, and the study was reported in accordance with the Standards for Reporting Qualitative Research (SRQR) guidelines. Results: The lived experience of hope was organized into four essential constituents: (1) hope as a horizon of possibilities; (2) everyday anchors of hope; (3) challenges to sustaining hope; and (4) cultivating hope in the face of adversity. Findings revealed that hope was experienced as a dynamic, multidimensional, and relational phenomenon. Participants described hope as being repeatedly reshaped in response to changing illness-related circumstances. Dyads identified multiple sources of hope, including family relationships, legacy, spirituality, and short-term goals, alongside challenges such as disease progression, caregiver burden, significant losses, and social isolation. Conclusions: Within this sample, hope emerged as a fundamental resource for adaptation to advanced chronic illness, enabling dyads to find meaning in the illness experience, cope with uncertainty, and preserve quality of life. As a phenomenon shared between the patient and the family caregiver, hope highlights the importance of dyad-centred approaches and its integration into palliative care to promote more humanized, relational, and responsive care that addresses the emotional, social, and spiritual needs of families.