"I wasn't expecting this!": the experience of taking care of a family member in Palliative Care
DOI:
https://doi.org/10.62506/phs.v7i1.313Keywords:
Palliative Care, Caregivers, Lived Experience, Phenomenological Research, Humanistic PsychologyAbstract
With an aging population and the expansion of palliative care, many homes have become hospices. Family members are increasingly taking on the responsibility of managing clinical care at home, which can overwhelm them and compromise the quality of care. Few studies address the lived experience of these caregivers. This study aims to contribute to the description and understanding of this experience, using Moustakas' Heuristic Inquiry as the methodological framework. A deep, personal exploration of the lived experience of caring for a family member revealed seven elements, expressed as: “I feel trapped”, “Constant state of alert”, “No life of my own”, “The relationship has changed, and my role is different”, “Continuous losses”, “Their life in my hands” and “It's not just illness”. Results highlight how caregivers’ experiences are often overlooked, yet their expectations regarding caregiving significantly shape their perception of the situation. The findings also underscore the influence of cultural values on caregiving and suggest that caregivers can experience the process positively - not all is pain and suffering. Spirituality, an underexplored element in this context, emerges as potential source of support for the caregiver's complex experience. This study emphasizes the urgent need to give caregivers a voice, address their needs, and developing public health policies aimed at supporting them.
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