Invisible But Essential: A Qualitative Study on the Experiences of Informal Caregivers in Home-based Palliative Care

Informal caregivers provide essential support to cancer patients from diagnosis through treatment, palliative care, and end-of-life care. While their practical contributions are widely acknowledged, the emotional and psychological experiences of caregivers remain underexplored, particularly in home-based palliative care settings. Understanding these experiences is crucial to improving support and interventions for caregivers. This study explored the emotional and subjective experiences of informal caregivers providing home-based palliative care for family members with cancer, using retrospective data collected after the patient's death. A qualitative exploratory study was conducted using semi-structured interviews with 12 informal caregivers recruited from Primorsko-Goranska County, Croatia. Interviews were conducted face-to-face, audio-recorded, transcribed verbatim, and analyzed using thematic analysis to capture patterns and insights in caregivers' experiences. Analysis revealed one overarching theme, "Still Invisible but Essential," and 2 major themes: "Confronting the reality of an incurable cancer diagnosis" and "Facing the paradox - choosing between length and quality of life," encompassing 5 sub-themes. Caregivers described both rewarding and stressful aspects of care, including emotional challenges, communication difficulties, decision-making burdens, and unmet needs for professional support, alongside practical caregiving responsibilities. Informal caregivers are indispensable to home-based palliative care, yet their emotional and subjective experiences are often overlooked. Findings highlight the need for tailored interventions and support services addressing both practical and emotional aspects of caregiving, informing policy, clinical practice, and caregiver support in Croatia and similar contexts.