Pediatric end-of-life care barriers and facilitators: Perception of nursing professionals in Jordan

Abstract

Introduction:End-of-life care is a critical issue for pediatric population with terminal illness to ensure the best possible quality of care for them and their families. A survey was conducted to identify the barriers and facilitators to provide pediatric end-of-life care.Methods:A descriptive cross-sectional study was conducted at three tertiary centers providing end-of-life care in Jordan. Two hundred critical care nurses were surveyed (response rate 93%).Results:Nurses reported moderate level of experience in all areas of delivering pediatric end-of-life care. The highest scoring of barriers respectively were patients-families barriers having deal with angry family member; health-care professional barriers multiple physicians, involved with one patient, who differ in opinion about the direction care, and where plan of care should go; and organizational barriers not available support person for the family. The highest scoring of facilitators respectively were of patients families facilitators having family members accept that the patient is dying; health-care professional-facilitators having a physician agrees about the direction of care, and organizational facilitators providing family members adequate time to be alone with the pediatric after he or she has died.Conclusion:Nurses perceived that patient-family, health-care professionals, and organizational related barriers and facilitators were had the most influence in providing of pediatric end-of-life care. Findings highlighted the need for additional education and support for pediatric staff, across professions, in providing pediatric end-of-life care. A pediatric end-of-life care team should be developed to assist in improving patients’ quality of care and increasing the awareness for the need for a standardized tool to evaluate the nursing competency level concerning pediatric end-of-life care.

Nurses' perceptions of intensive care unit palliative care at end of life

“…Despite increasing support, the quality of palliative care at the end of life in the ICU has shown little or no improvement over time (DeCato et al, ; Penrod et al, ). Several studies from around the world have reported significant barriers that block the integration of palliative care into the ICU (Aslakson et al, ; Azzizadeh Forouzi et al, ; Friedenberg et al, ; Khraisat et al, ). These barriers include inadequate training of the staff in palliative care, ICU cultural norms that encourage continuation of therapy at all costs and resistance from family members to change the goals of therapy because of unrealistic expectations (Aslakson et al, ; Azzizadeh Forouzi et al, ; Friedenberg et al, ; Holms et al, ; Zante et al, ).…”

A Systematic Review: What Are the Barriers for Nurses in Providing End of Life Care for Pediatric Patients?

“…Difficulty with communication between health care professionals and patient is difficult when caring for children, and it already began when a serious diagnosis need to be discussed and bad news delivered to a child and his or her parents [13,4]. In study conducted by Esmaili et al (2018), a lack of communication between staff and terminally ill patients can be caused by the cultural norms that dictated these communication patterns which does not allow staff to mention dying, even when that is the case [14], Moreover, deal with angry family member situation might also be a barrier for nurses to provide pediatric EOLC since nurses must have time to listen when family need to express their feelings, to provide comfort and talk openly and honestly about grief [15]. Barriers in this communication may occur when physicians are evasive and avoid the family [16].…”

“…In several studies, nurses reported that the health care professional related barrier to provide pediatric end-of-life care was multiple physicians or health care professionals do not have the same perspectives about the direction care or treatment plans [15,18,19].…”

“…Another barriers related to interdisciplinary team was no available support person for the family such as a social worker or religious leader [20,15,19]. Nurses have to concurrently deal with patients whose lives are being maintained and those whose lives are ending, they might feel it is excessively to tolerate these situations alone.…”

“…Thus, they need support and assistance from other discipline such as social workers or religious leaders in moving through the pediatric EOLC process with their patients [15].…”