ArticleInternational journal of nursing studies advances2026
Unclear boundaries: Family caregivers' invisible role in home-based palliative care in Norway: an exploratory analysis of secondary data from two previous studies.
Article in International journal of nursing studies advances, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
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Abstract
Background: 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. Objective: 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. Design: This study was a qualitative and explorative secondary analysis of data from two prior studies, guided by Gadamer's hermeneutical approach. Settings: All interviews took place in the participants' homes, except for two in public institutions and two at work locations. Participants: Twenty-four male and female family caregivers (age range, 30-80 years). Methods: 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. Results: Three main themes were identified. First, Conclusions: 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.
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