ChiPPS Pediatric Palliative Care Newsletter -- Issue #6; February, 2007

Edited by Charles A. Corr, Ph.D., CT, and Christy Torkildson, RN, PHN, MSN

Issue Topic: Perinatal Loss
Download this Issue's collection of articles (PDF)


by Charles Corr and Christy Torkildson 

Welcome to the sixth issue of our ChiPPS electronic newsletter -- and the first issue of 2007! This newsletter is a project of the Education Work Group of ChiPPS, the Children’s Project on Pediatric Palliative/Hospice Services of the National Hospice and Palliative Care Organization.

We want to thank you, our readers, for supporting the ChiPPS PPC newsletter and we hope that you are finding it useful. We are grateful to everyone who has taken the time to offer feedback, support, and suggestions regarding this newsletter. Your input is very helpful to us. One of our primary goals is that you, the reader, will offer ideas and suggestions regarding themes and content of this newsletter—both current and future. What ideas and suggestions do you have for us to work on?

Please contact us via e-mail. You can reach Christy at ctorkildson@georgemark.org and Chuck at charlescorr@mindspring.com.

Before we get to the overall theme of this issue of the newsletter, perinatal loss, we want to share a few items of interest.

1.  ChiPPS Online.  A reminder that NHPCO has created an easily accessible Web page with information about pediatric issues, including ChiPPS. Please feel free to share this URL with any of your colleagues or others who may be interested in our work:  www.nhpco.org/pediatrics.

2. Calendar of Events.  We have added a calendar of pediatric educational opportunities to the ChiPPS section online. Should you have an event or conference that might be of interest to our readers, please send an email to Karen Paradise Baranowski who will help us keep track of these offerings. Email Karen at Karen.baranowski@intermountainmail.org.

3. Call for Resources of Interest. Issue #7 of our e-newsletter will continue our exploration of perinatal loss; issue #8 will focus on issues relating to neonatal loss.  If you have a resource suggestion that might be valuable to share, please email Karen Paradise Baranowski to let her know, Karen.baranowski@intermountainmail.org.  It could be a Web site, upcoming conference, publication, article or other material.

4.  Caring Connections. NHPCO's Caring Connections initiative is preparing to release a collection of new brochures that will be of interest to those involved with pediatric care. "Talking with Your Child About Illness and Treatment," "Your Child's Pain," "When Your Child Dies: Coping with Grief" and "Talking with Your Child's Doctor" will be available in English and Spanish. Once released, copies will be available free of charge from the Caring Connections' Web site, www.caringinfo.org, and available for purchase in bulk from Marketplace.  ChiPPS was an important collaborator in the creation of these important new additions to Caring Connections.  Look for news about the upcoming release!

Perinatal Loss

The overall subject of this issue of this newsletter and issue #7, which will follow in three to four months, is perinatal loss. This issue also includes “A Parent’s Guide to Palliative Care,” from Advances in Neonatal Care, Vol. 6(1), pp. 54-55, 2006, by Gay Gale and Alison Brooks, reprinted with permission from The National Association of Neonatal Nurses.

Table of Contents
 Download the following collection of articles: Perinatal Loss (PDF)

A “Primer” on Perinatal Loss and Infant Death: Statistics/Definitions, Parents’ Needs, and Suggestions for Family Care
 Ann Fitzsimons, MBA
Beth Seyda, BS

This article presents key highlights from the 15th National Perinatal Bereavement Conference held in Chicago in October, 2006, by PLIDA. This is the first of a two-part series, providing an overview of key perinatal/neonatal mortality statistics, what support parents need before/during/after a perinatal loss, and suggestions for supportive care of families experiencing perinatal loss. The second part of this series will appear in the next ChiPPS Newsletter.

Dealing with Perinatal Genetic Diagnoses
 Sharon List, RN, MSN

This article offers guidelines for healthcare providers who may care for parents facing a perinatal diagnosis of a genetic disease or birth defect.

Focus on Living: The Role of Antenatal Advance Care Planning
 Suzanne Toce, MD

This article discusses advance care planning with a family facing a terminal or life-threatening congenital/perinatal condition including making a contingency plan for the care of their fetus/newborn that is consistent with their goals and best interest of the fetus/newborn.

A Family’s Journey with Newborn Life and Death
 Mary Kay Tyler, RN, MSN, CNP
Susan Lakin, LCSW

This article explores grief and bereavement after pregnancy loss through miscarriage, stillbirth, or neonatal death.

Perinatal Hospice: Another Option
 Jody R. Chrastek, MSN, CHPN
Stacy Remke, MSW, LICSW

This article describes The Deeya Perinatal Hospice program that is part of the Pain and Palliative Care services of Children's Hospitals and Clinics of Minnesota.

A Parents’ Guide to Palliative Care
 Gay Gale, RNC, MS
Alison Brooks, RN, MS, CNS

A “Family Education Toolbox” guide reprinted with permission by The National Association of Neonatal Nurses.

We hope you will enjoy reading these article and will find them to be of value in your work. Thank you for taking time to read this issue and for any feedback that you can offer us.  Providing pediatric palliative and hospice care to children, adolescents, and their family members has made great strides in recent years, even though it is certainly not always easy and still faces many challenges and obstacles.  We wish you all the best in your good work.

If you are not on our mailing list and received this newsletter from a friend or some other source, please send an email message to CHIPPS2@NHPCO.org requesting to be added to our mailing list.

Visit the ChiPPs Web page at www.nhpco.org/pediatrics for further materials and resources of interest.

 

© ChiPPs Newsletter, NHPCO 2007.