ANTICIPATORY GRIEF IN PARENTS WHOSE CHILD HAS A NON-MALIGNANT LIFE-LIMITING CONDITION

Abstract

Parents who have a child with a non-malignant life-limiting condition (NMLLC) universally experience anticipatory grief (AG), which is grief prior to death. While there are numerous studies on post-death grief, research on AG in parents who have lost a children with a NMLLC is scarce. This qualitative study used an interpretive description approach and semi-structured interviews were conducted with parents who have a child with a NMLLC recruited through a children’s hospice. The data illuminates the complex challenges experienced by these parents. Participants learned to navigate uncertainty while grieving ongoing losses. They experienced varying degrees of sadness, but also found joy in creating memories. Maintaining their parental role empowered them and helped them cope with grief. Parents often mentioned the importance of empathy and transparency when communicating with health care providers. The benefits of holistic care of the whole family by a specialized pediatric palliative care team were also highlighted.