Objectives The purpose of this presentation is to bring together disparate research findings in order to make recommendations for family-centred practice with the goal of improving clinical care by better supporting families as they experience caring throughout the life-limiting illness and possible/actual death of a child.
Methods This presentation draws on data from three sources: preliminary results from a prospective survey of north American parents caring for a child with a life-limiting illness; literature review of bereavement from popular media and academic journals and retrospective interviews with bereaved parents.
Results The possibility of a child dying is widely acknowledged to be an extraordinarily stressful experience for a parent. Furthermore, after a death, parents are often expected to “get on with their lives” within a short timeline despite their tremendous loss. Notwithstanding this well-documented adversity, parents may experience positive aspects of childhood illness and death, which are little researched or understood.
Conclusion The understanding of grief work as detachment has shifted to a conceptualisation of grief work as supporting the continuation of bonds between the living and the deceased. Our research supports this shift. This presentation addresses how to work with parents, both before and after the death of a child, to facilitate the incorporation of the deceased child into their lives. We also examine positive processes and outcomes of caring for a child with life-limiting illness as well in parental bereavement.
Funding SSHRC grant #410-2007-0709 CIHR FRN: MOP 79526.