Needs of caregivers of patients receiving in-home palliative and end-of-life care
Elizabeth Pepin, Johanne Hébert
Abstract
Home support for patients receiving in-home palliative and end-of-life care (PELC) is greatly dependent on the daily presence of caregivers and their involvement in care delivery. However, the needs of caregivers throughout the care trajectory of a loved one receiving in-home PELC are still relatively unknown. OBJECTIVES AND METHODOLOGY: This descriptive qualitative study focuses on the role of caregivers who have cared for a person receiving in-home PELC with the goal of describing their needs throughout the care trajectory. As part of this process, 20 caregivers took part in semi-directed interviews. RESULTS AND DISCUSSION: This study sheds light on the multiple needs of caregivers of loved ones receiving in-home PELC. These informational, emotional, and psychosocial needs show that caregivers experience changes in their relationship with their loved one. Spiritual needs were expressed through the meaning ascribed to the home support experience. And the practical needs expressed by participants highlight the importance of round-the-clock access to PELC services and the essential importance of nursing support. CONCLUSION: The needs of caregivers of loved ones receiving in-home PELC are not being met to a satisfactory degree. It is important to consider these needs in the care trajectory, alongside the needs of the patients themselves, in order to improve the support experience leading up to the bereavement period.