Être le grand-parent d'un enfant gravement malade, aujourd'hui, au Québec : résultats d'une étude qualitative

Using an intergenerational relationship approach, the purpose of this qualitative study was to examine the experience and the role of grandparents regarding their grandchild with a serious illness or in palliative care, in pediatric hospitals, today, in Quebec. The sample included: 24 grandparents of grandchildren with a serious illness ranging in age from 1 day/16 years, and suffering from one of the following conditions: cancer, orphan disease or complex pathologies and extreme prematurity. Among these children, six had died; six caregivers (nurses, physicians). Data was collected by using semistructured interviews with grandparents and caregivers. Findings of the survey indicate that: a: the experience of grandparents is intense and presents suffering; b: the support of the grandparent is essential, common, multiple and almost invisible from the hospital's view; c: the support of grandparents is divided into two sections: psychological support; practical support: presence in the hospital; presence at home; presence within the family. An important implication of the study is that health professionals should plan interventions to support and encourage grandparents getting involved in the care of their grandchild and that they should be included in the hospital world.