Caring for those at the end of their lives, especially children, brings a set of unique challenges. From pain management, to supporting the family, to caring for themselves, nurses in a pediatric intensive care unit (PICU) share their thoughts in a new qualitative study published in the American Journal of Critical Care. The research involved interviewing twelve PICU nurses who provided insight into caring for dying pediatric patients and balancing the needs of patient, family and themselves. Five main themes emerged from the interviews: 


Journey to death: Included within this theme were experiences in caring for the dying child, the death of the child, creating a peaceful journey, and the grieving process. 

A lifelong burden: Nurses discussed the burden of care, both physically and emotionally, the family experienced. 

Challenges delivering care: Sub-themes involved challenges surrounding a family's hope, pain management, physician communication, respecting the patient's wishes as well as the parent's wishes. 

Maintaining self: Nurses discussed the difficulties in coping with the death of a child, grieving and finding closure, and the support received from co-workers. 

Crossing boundaries: Nurses shared their thoughts on their relationships with their patients and views on becoming close with families. 


Nursing Staff Discussing Care



The researchers concluded that providing palliative care in the PICU challenged nurses both professionally and personally, and additional support to help nurses cope should be provided: 

Providing palliative care to children with life-threatening illnesses is complex. PICU nurses are in a key position to advocate for and deliver quality palliative care. Our findings suggest the need for future research focused on strategies to support nurses' personal grieving and coping abilities and decrease perceived work-related stress.

In addition, the research emphasized the important role of family perspective and how it could enhance care: 

Understanding the perspective of the families of dying children may provide valuable insight for an interdisciplinary approach to end-of-life care.


Many of these themes and concluding recommendations share a similarity with the principles of trauma informed care, including self-care, and the DEF Protocol



Remember the FAMILY


Whether it’s palliative care or trauma informed care, understanding the emotional aspects of medical care benefits the patient, their family, and the nursing staff. Join us on Facebook to share your experience of providing palliative or trauma informed care.


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