Written by Joanie Maynard
resarch project: anticipatory grief in parents who have a child with a non-malignant life-limiting condition
Lead investigators/designated PI’s
Project approval date
March 15, 2021
Analysis in progress as of December 2021
As parents of a child with a life-limiting condition witnessing the ongoing deterioration of their child, they experience anticipatory grief; they grieve the loss of a future they had wished for their child that no longer exists. Attention to the emotional, social, and spiritual difficulties that parents experience needs to begin early in the disease trajectory. Research on anticipatory grief in parents is scarce. While the number of children with a nonmalignant life-limiting condition is relatively small, the impact on parents is immense.
The purpose of this study is to provide an in-depth exploration of anticipatory grief in parents who have a child with a nonmalignant life-limiting condition. Our goal is to make a valuable contribution to the understanding of anticipatory grief, and consequently to improve care and support for the parents whose child will die.
This research will take place in the form of semi-structured interviews via Zoom with each participant, with participants potentially being invited to a follow-up interview. We will also follow-up with an online questionnaire on the impact this research had on participants and its value to them and to others.