Qualitative nursing research into the experience of family members caring for a dying loved one has been limited. This study used a phenomenological approach to explore this experience. The pattern of caring for a dying loved one and its intertwined dimensions were described. Caregivers felt a sense of helplessness that was associated with illness progression, their inability to relieve pain and discomfort, and decision-making related to patient admission to a palliative care unit. Lack of support from health professionals and having to face personal limits were found to accelerate the decision to admit a patient. The role of a support person involved with the caregiver was also considered and found to be an area worthy of further investigation. Health professionals must provide information and support tailored to the caregivers' needs as they change along a patient's illness trajectory.
There were many challenges in this project and lessons learned will be discussed. Based on the results, the tool has been modified and is currently utilized in diverse settings.
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