Joanie Maynard

Joanie is originally from a small town in Quebec, but moved to British Columbia over a decade ago. She has been working as a registered nurse in the pediatric intensive care unit at BC Children’s Hospital and at the Canuck Place Children’s Hospice in Vancouver, BC since graduating from UBC School of Nursing in 2017. She completed an advanced certificate in pediatric critical care in 2021 and holds specialty certification in pediatric critical care with the Canadian Nurses Association. She is in her final year of her Master of Nursing. Her research interests include pediatric palliative care, grief, transition from pediatric to adult care, and pediatric intensive care follow-up.


Title: Anticipatory grief in parents of children who have a non-malignant life-limiting condition

Abstract: 

Background
Parents who have a child with a life-limiting condition (LLC) experience intense emotions; they know that their child’s death is inevitable. These parents experience anticipatory grief (AG); they grieve the loss of a future they had wished for their child that no longer exists. While there are numerous studies on post-death grief, research on AG in parents is scarce.

Objectives
This study explores AG in bereaved parents who have a child with a non-malignant LLC and identifies factors that have influenced parents’ AG.

Methodology
AG was studied using interpretive description and semi-structured interviews were conducted with four purposively selected participants. The interviews were analyzed using thematic analysis.

Results
Study participants had to learn to navigate uncertainty while grieving multiple ongoing losses. They experienced varying degrees of anger and sadness, but they also found joy and meaning in making memories. Maintaining their parental role empowered them and helped them cope with their grief. During the interviews, parents often mentioned the importance of empathy and transparency when communicating with health care providers (HCP). The benefits of a holistic approach to care of the whole family by an interdisciplinary team of pediatric palliative care clinicians were also highlighted by participants.

Implications
The results of this exploratory study on AG in parents of children who have a non-malignant LLC provide opportunities for education for HCP and for further research. It provides an understanding of the reality lived by these parents and informs how HCP can support parents in their grief journey.

 


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