EXPLORING FAMILY CAREGIVERS’ EXPERIENCES DURING CAREGIVING LEAVE FOR DYING RELATIVES: A Phenomenological Cross-Institutional Study

BACKGROUND In Denmark, relatives can take leave from work to care for a terminally ill loved one at home, with financial compensation for lost income. Although seven out of ten Danes express willingness to take such leave, few actually do so, often due to concerns about inadequate support and the weight of responsibility. Many fear emotional overwhelm and strain, and research confirms that this concern is well-founded. Adequate professional support is crucial to alleviate the burden on caregivers and enhance their ability to cope. This underscores the need to strengthen support systems for caregivers on leave and calls for further research to identify their specific support needs during this time.
AIM To form a basis for a future tailored supportive assistance to caregivers, the aim of this study is to describe the caregivers’ lived experiences during caring leave.
METHODS The methodological stance in this study is phenomenology and hermeneutics, inspired by Karin Dahlberg's reflective lifeworld research. Seven narrative interviews, guided by Harry Hermanns, were conducted, recorded, and transcribed. The analysis process included a series of collaborative workshops with researchers from different institutions and settings. The contributors were all research nurses with qualitative experience and represented nursing education, clinical research, and critical research. Using the forces of poetic language, we formulated narratives reflecting the findings.
FINDINGS & DISCUSSION Participants who took caregiving leave sought to find time to create peace, establish meaningful moments, and manage practical matters while navigating the final journey's psychological process. Their needs coalesced three themes: 1) Giving Love and giving History, 2) Giving Life and Letting Go, 3) Giving peace and giving Meaning. Philosophically, our findings align with Løgstrup’s concept of interdependence, highlighting the deep bonds between caregivers and care recipients, which bring both strength and vulnerability. While caregiving involves challenges, it also offers opportunities for personal and relational growth. Healthcare professionals should create an environment that supports caregivers in navigating this balance, fostering both connection and fulfillment.
CONCLUSION In conclusion, our study highlights the need to address the often-overlooked existential needs of caregivers on leave, which play a key role in shaping their experience. By adopting a holistic approach that includes existential support, healthcare professionals can help caregivers manage their roles more effectively, turning a potentially burdensome time into one of personal growth and stronger relationships.