Exploration de l’expérience du deuil parental : une étude rétrospective auprès de parents dont l’enfant est décédé d’un cancer au CHU Sainte-Justine
Objectives: For parents, grieving the loss of a child from cancer is a complex and painful journey for which we do not understand all the issues, in particular, what influences psychological health and long-term quality of life and more specifically the situation of fathers. This study was conducted with parents two to twenty years after the death of their child. The objectives are 1/ to describe the quality of life, psychological distress, and bereavement symptoms of bereaved parents, 2/ to explore the influence of gender and time since death on psychological health test results, and 3/ to identify predictors of parents' current psychological health. Methods: A retrospective quantitative analysis carried out was conducted with 32 mothers and 14 fathers of children who died of cancer at Sainte-Justine UHC between 2000 and 2016 were recruited and completed a self-reported online questionnaire using Medical Outcomes Study Short Form (SF-12), Brief Symptom Inventory (BSI-18) and Inventory of Complicated Grief (ICG-19). Results: Parents’ symptoms of grief continue to be very present, even up to 18 years after death (58%). Mostly mothers recall very significant symptoms of grief. They report a significant change between the first year after death and now which is less true for fathers. Finally, the predictors of Quality of Life and distress provide us with information on vulnerability patterns: being a father, having high symptoms of grief, and short time elapsed since death. Conclusion: Understanding the differences between fathers’ and mothers’ grief is important for health professionals to better support both bereaved parents efficiently. The results suggest that a follow-up of bereaved parents is needed, even long after the death of their child.
Deuil parental Pediatric cancer Quality of life Psychological distress Grief symptoms Retrospective analysis