Editor’s Note: Rebecca Hu, MD, is a resident physician in pediatrics at the University of Virginia. -Rachel Y. Moon, MD, Associate Editor, Digital Media, Pediatrics
As my intern year is coming to an end, I have been reflecting on what a privilege and responsibility it is to care for sick children, especially with how we support parents through difficult diagnoses, including life-limiting conditions that may result in the death of their child.
Historically, mothers have been the focus of bereavement research, likely at least partly due to social assumptions about masculinity. In a new study being released this week in Pediatrics, with an accompanying video abstract, by Dr. Postavaru and colleagues at various United Kingdom universities, fathers’ experiences of loss and grief around the death of their child to a life-limiting condition were studied (10.1542/peds.2022-059122). In this article, entitled “The FATHER Model of Loss and Grief following Child’s Life-limiting Illness,” the researchers used a meta-ethnographic approach to analyze 40 qualitative articles about 384 fathers and used several approaches to minimize unconscious bias with regards to gender norms.
Below is the FATHER acronym created after grouping similar themes, as well as brief glimpses into some of the feelings and thoughts the fathers expressed:
- F – Facing Loss – felt loss of both present and future, circled between hope and hopelessness
- A – Ambivalence: Mixed Feelings – felt isolated when child appeared healthy and mixed relief and guilt after the child’s death, wanted to stay connected to child but also live in the present
- T – Traumatic Loss: Post Traumatic Stress - felt shock, anger, anxiety, stress, depression, suicidal ideation, helplessness, isolation, derealization
- H – Hard Work of Grief: Fatigue –felt loss of control over emotional capacity, some were able to refocus and accept the loss
- E - Endurance, and Coping: Loss-Oriented vs Restoration –worked through the loss with remembrance activities, others tried to protect themselves by concealing their pain, having grief community helped, not having support increased feelings of isolation
- R – Renewed Sense of Aliveness and Purpose - had greater appreciation for their life and increased perspective, associated with post-traumatic growth, comforted by religion
The analysis offered a framework for understanding how fathers grieve and how this grief is often hidden due to social and cultural factors, but also highlighted the importance of the individualized approach to support the specific feelings a father is struggling with.
Moving forward, I will use the insights from this article to help me empathize with fathers and remember that aspects of each of the categories can co-occur at any point in the grief process, both before and after the child’s death. I will also try to maximize positive factors such as giving fathers a sense of control as much as possible and protecting routine activities with the child to help restore a sense of normality. When a child passes away, our responsibility to them does not end; we must continue to support parents through bereavement and to a renewed sense of purpose.
