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End-of-life care for the dying child: what matters most to parents
Norbert J Weidner1, Marcella Cameron, Rebecca C Lee
1Division of Clinical Anesthesia and Pediatrics, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio, USA. norbert.weidner@cchmc.org
Objective:
To identify and define the dimensions of pediatric end-of-life (EOL) care that are important to parents.
Population:
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.
Design:
Qualitative data derived from semi-structured and focus group interviews were analyzed using content analysis.
Setting:
A large pediatric hospital located in the Midwestern United States.
Results:
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.
Conclusion:
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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