Looking for Peace When Life Fades-Informal Caregivers' Lived Experiences During Caregiving Leave: A Qualitative Study

In Denmark, informal caregivers can receive a Municipal Care Allowance to provide end-of-life care at home. While this policy acknowledges the value of caregiving, little is known about how it shapes caregivers' lived experiences and support needs during caregiving leave.

This study explores the lived experiences of informal caregivers during caregiving leave, with a focus on existential, emotional, and relational dimensions.

Inspired by Reflective Lifeworld Research (RLR), seven narrative interviews were conducted with caregivers who had provided end-of-life care at home. Data were analysed collaboratively using a bridled phenomenological approach to uncover the essence and themes of the phenomenon. Creative non-fiction narratives were used to illustrate findings.

The essence of caregiving leave is characterised by a profound relational connection with the dying person and a purposeful structuring of everyday life around caregiving. Three themes emerged: Giving Love and History, Giving Life and Letting Go, and Giving Peace and Meaning. Caregivers experienced caregiving as both meaningful and burdensome, navigating emotional, existential, and practical terrains.

The study followed the Ethical Guidelines for Nursing Research in the Nordic Countries. Informed consent was obtained orally or in writing, and anonymity was ensured. The study is approved by the University College Absalon Internal Review Board.

Although the RLR approach provided deep insight into caregivers' lifeworlds, the small and context-specific sample may limit its transferability. Researcher bias cannot be entirely excluded despite efforts to bridle pre-understandings.

Caregiving leave is not solely a period of strain but also a space for relational and existential growth. healthcare professionals should adopt relationally attuned and existentially sensitive approaches to support caregivers as co-travellers in the end-of-life journey.