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Western Journal of Nursing Research, Vol. 29, No. 4, 448-465 (2007)
DOI: 10.1177/0193945906295533

Conducting End-of-Life Studies in Pediatric Oncology

Pamela S. Hinds

St. Jude Children's Research Hospital, Memphis, Tennessee, pam.hinds{at}stjude.org

Elizabeth A. Burghen

St. Jude Children's Research Hospital, Memphis, Tennessee

Michele Pritchard

St. Jude Children's Research Hospital, Memphis, Tennessee

Improving our ability to prevent or diminish suffering in dying children and adolescents and their families is dependent on the completion of high-quality pediatric end-of-life studies. The purpose of this article is to provide useful evidence-based strategies that have been used to implement and complete clinically useful pediatric end-of-life studies in oncology. The article describes specific peer-review and methodological challenges and links those to evidence-based solutions. The challenges and solutions described in this article are from eight end-of-life studies involving pediatric oncology patients. It is hoped that the solutions described here will benefit others in their efforts to implement pediatric end-of-life studies so that clinically useful findings will result and will improve the care of dying children and adolescents.

Key Words: pediatrics • pediatric oncology • end-of-life research • dying children and adolescents


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M. Pritchard, E. Burghen, D. K. Srivastava, J. Okuma, L. Anderson, B. Powell, W. L. Furman, and P. S. Hinds
Cancer-Related Symptoms Most Concerning to Parents During the Last Week and Last Day of Their Child's Life
Pediatrics, May 1, 2008; 121(5): e1301 - e1309.
[Abstract] [Full Text] [PDF]