To identify and define the dimensions of pediatric end-of-life (EOL) care that are important to parents.
Parents of children who died as a result of an illness, chronic condition, or birth defect while receiving EOL care in hospital or at home in 2004 and 2005.
Qualitative data derived from semi-structured and focus group interviews were analyzed using content analysis.
A large pediatric hospital located in the Midwestern United States.
Seven dimensions of pediatric EOL care were identified--respect for the family's role, comfort, spiritual care, access to care and resources, communication, support for parental decision making, and caring/ humanism.
There are clear dimensions of pediatric EOL care that are important to parents; these can be defined in terms of health care provider behaviours, some of which require balancing seemingly conflicting objectives. Developing a measurement tool based on these dimensions would help to improve the quality of pediatric EOL care.
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"Although parents desired to do as much as possible for their child independently, this had to be combined with help from health professionals to prevent the child's discomfort (James & Johnson, 1997). Parents wanted to accomplish the tasks parents usually perform for their children, such as changing diapers, dressing and bathing the child (Weidner et al., 2011). "
[Show abstract][Hide abstract] ABSTRACT: The aim of this integrative review was to increase knowledge about parents’ experiences of palliative care when their child is dying or has died due to illness using Whittemore and Knafls (2005) analysis process. Computerized databases were used to search the literature. Nine papers met the inclusion criteria. The analysis resulted in five categories: genuine communication, sincere relationships, respect as an expert, and alleviation of suffering and need of support, including 15 subcategories. Health professionals need education to provide high-quality pediatric palliative care. They especially need training concerning existential issues, and further studies need to be performed.
[Show abstract][Hide abstract] ABSTRACT: Pediatric ICUs frequently provide end-of-life (EOL) care to children. Our understanding of how EOL care is delivered to children and what constitutes effective care for dying children and their families in the ICU setting continues to evolve. This review identifies recent work describing events related to the death of a child in the ICU as well as interventional efforts to improve family and provider support.
Pediatric ICUs (PICUs) often provide EOL care to children who die in the developed world. Areas of active investigation include identifying effective communication techniques, meeting the needs of patients and parents, and providing support to care providers.
PICU practitioners are developing flexible and novel approaches to pediatric EOL care in the ICU setting.
Current opinion in pediatrics 06/2013; 25(3):285-9. DOI:10.1097/MOP.0b013e328360c230 · 2.53 Impact Factor