Parents' experiences of healthcare provider actions when their child dies: An integrative review of the literature

Abstract

This review helps to identify important aspects of paediatric end-of-life care as recognised by parents, with the intention of placing the family at the centre of any future end-of-life care education or policy/protocol development.

Family Experience and PICU Death: A Meta-Synthesis

“…What does exist identifies a haphazard approach, largely dependent on the preexisting relationships between staff and families, leaving parents feeling abandoned by hospital staff. 44 Therefore, we recommend the implementation of an organized bereavement follow-up program in each PICU, to maintain support to families in the first months after their child's death.…”

Supporting Muslim families before and after a death in neonatal and paediatric intensive care units

“…The death of an infant or child is regarded as one of the most devastating events endured, with the resultant grief of families influenced by their interactions with clinicians involved in their child's care . Recent guidelines for family‐centred care in NICU and PICU have been developed to provide clinicians with evidence‐based strategies to optimize support of the families of critically ill patients .…”

“…Yet, knowing what to say to parents, how to prepare them for imminent death and supporting bereaved families can be very difficult . Parents appreciate opportunities to create memories with their child prior to death, as well as practices or rituals to mark the death of their child . Families also appreciate actions or gestures that demonstrate respect for the parent‐child relationship and the family unit and that acknowledge that the child is important and special .…”

“…Families also appreciate actions or gestures that demonstrate respect for the parent‐child relationship and the family unit and that acknowledge that the child is important and special . However, it is important to acknowledge that the extant research evidence related to bereavement support in NICU and PICU primarily relates to Western settings, including Europe and Australia . Recent research conducted with Muslim populations in critical care highlights the relevance of culture and religion, but this research specifically focuses on adult critical care settings, not infants and children.…”

Critical care nurses’ experiences of caring for a dying child: A qualitative evidence synthesis

“…Finally, we found that although the child's death required many professional tasks from the nurses, they primarily responded to the death on a personal, rather than professional, level. During the moments surrounding the death, many nurses reported feeling intense sadness and distress, which were often suppressed due to a sense that expressing such emotion would be detrimental to the family and would be perceived as “unprofessional.” However, past studies have shown that bereaved families do not view staff emotional expression as unprofessional, but rather as demonstrating compassion and caring (Brooten et al., ; Butler, Hall, Willetts, & Copnell, ; Butler et al., ; Heller & Solomon, ). We suggest that nursing staff caring for a dying child be encouraged and supported to demonstrate their emotions as appropriate with a grieving family, particularly if a strong bond has been formed with them.…”