The future need for home-based palliative care is expected to increase significantly. Family caregivers play a crucial role in home settings by ensuring continuity of care, participating in decision-making, and providing both emotional and practical support to their family members. Despite guidelines highlighting the importance of their involvement in providing palliative care at home, inadequate support from healthcare professionals often leaves family caregivers feeling overwhelmed and undervalued. This study aimed to explore the pivotal role of family caregivers in home-based palliative care to deepen our understanding of their experiences and challenges as they navigate their undefined roles between healthcare professionals and patients. This study was a qualitative and explorative secondary analysis of data from two prior studies, guided by Gadamer’s hermeneutical approach. All interviews took place in the participants’ homes, except for two in public institutions and two at work locations. Twenty-four male and female family caregivers (age range, 30–80 years). Using purposive sampling, data were collected through individual interviews with family caregivers. Oncology nurses and cancer co-ordinators facilitated the recruitment of participants. Secondary data analyses were conducted using Gadamer’s hermeneutical circle. Three main themes were identified. First, being lost in an unclear palliative care pathway where the family caregivers described themselves as “pawns” with an overwhelming burden. Second, feeling invisible in the caregiving role reflected how many family caregivers felt unnoticed despite their crucial contribution to patient care. Their well-being and needs were rarely addressed, leaving them struggling with their own emotions. Third, being assigned unclear responsibilities and tasks beyond capacity . These family caregivers felt overwhelmed by their responsibility for their patients, compounded by insufficient information and dialogue, leaving them uncertain about what to expect. Interpreting their patients’ condition without competent assistance led to feelings of insecurity and unpredictability. To support family caregivers adequately in their ambiguous role within palliative care, healthcare professionals must foster open dialogue, ensure clear communication, and provide consistent support. Family caregivers often face emotional and practical challenges; therefore, their often invisible contributions should be acknowledged through increased involvement in care planning, structured emotional support, and formal recognition. Systematic approaches with transparent care pathways offering guidance to enable family caregivers to understand and manage their perceived responsibilities must be established. Hence, recognizing the significance of family caregivers’ roles and enhancing their health literacy are critical to improving the well-being of both patients and their families.
Tarberg et al. (Fri,) studied this question.