Publications
APS Bulletin • Volume 13, Number 2, 2003
Web Site Reviews
Michael E. Clark, PhD, Department Editor
Organization: Robert Wood Johnson Foundation Pediatric End-of-Life Resources
Reviewed by Paul Arnstein, PhD RN
www.rwjf.org/newsEvents/pediatricResources.jhtml
Site Audience
This special report on pediatric end-of-life from the Robert Wood Johnson Foundation provides resources, insights, and understanding for a broad audience. As a parent, the poignant testimonials from those who have suffered unspeakable tragedies opened my eyes and my heart. As a clinician, the “Parent’s Story” reaffirmed my belief that caring for dying patients and their families is a vital part of what I do, and that compassionate efforts are needed, noticed, and appreciated. From the researcher’s perspective, there is information about available grant money, as well as instruments for measuring health-related quality of life about which I was previously unaware.
Content Appraisal
The site has areas serving various purposes. “A Call for Reform” and “A Parent’s Story” convince the reader that the “as is” state is unacceptable, given available knowledge and the inconsistent, periodic, glimpses of excellence that perplex those during their time of unwavering need. New guidelines and timely resources for the treatment of dying children are available through the Last Acts program of the Robert Wood Johnson Foundation. Up-to-the minute information on current projects, publications, and committee reports are freely available and well designed. Curricular upgrade projects for medical and nursing schools detail strategies to provide coordinated, sensitive, and comprehensive care to patients and their families as delineated by ethicists and palliative care experts. A pre-publication copy of “Precepts of Palliative Care for Children/Adolescents and Their Families,” developed by Last Acts in collaboration with the National Association of Pediatric Nursing and the Society of Pediatric Nurses, also is available. The full version of the 2002 Institute of Medicine publication, “When Children Die: Improving the Palliative and End-of-Life Care of Children and Their Families” can also be downloaded, and includes excellent content appropriate for clinicians, educators, researchers, and administrators. Finally, “A Sampling of Pediatric Palliative Care Programs” provides links to resources and showcases centers of excellence in this important clinical area.
Navigation/Ease of Use
Given the large volume of up-to-date materials and resources, the site was remarkably easy to navigate. Navigating to other areas of the Robert Wood Johnson site was similarly easy, with free registration available to those interested in using the interactive components of the site. Registration was simple, requiring about 2 minutes to complete, and was not needed for accessing the Pediatric Palliative Care section of the site.
Recommendations
This site is updated regularly and its purpose is consistent with the APS goal to advance pain-related education and reduce suffering at the end of life.
Review content represents the opinion of the reviewer, not APS. Please submit your suggestions for future Web site reviews to Michael E. Clark, PhD, Web Site Review Department Editor, michaeleclark@ highstream.net.
Please direct your comments or suggestions for future Web Site Reviews to Michael E. Clark, PhD, Department Editor, at michaeleclark2@msn.com