Many Quebecers accompany loved ones in palliative care until their final breath. But who supports these caregivers during and after this demanding process?
The family caregivers expressed a need for better psychological support.
Few studies to date have documented the experiences of families as one of their members move from curative to palliative care. In 2013-2014, Université du Québec à Montréal Psychology researcher Mélanie Vachon and her team conducted a series of interviews with 28 family caregivers in the greater Montreal area, in order to shed some light on this difficult time in their lives.
The findings point to a clear difference between the support offered to curative caregivers and that offered to those providing palliative care. This difference is manifested as a perception of a lower quality of care and of less effective communication between the doctor and the family.
This situation is likely to increase feelings of helplessness, exhaustion levels, regrets and traumatic memories that will endure and can slow down the inevitable grieving process. It could even jeopardize the ability of caregivers to look after their loved ones properly and to develop resilience.
The family caregivers expressed a need for better psychological support. They would also like to be better educated and informed, and to receive more support in dealing with suffering, death and the loss of a loved one. These requests are all the more important in a social context in which the population and the government have a common interest in encouraging home care. A home care model requires the development of effective support measures for family caregivers.
This study advances our knowledge about the experiences of family caregivers and highlights the importance of adequately preparing them, on social, medical and psychological levels, to provide effective support for those nearing the end of life.