To Hold or Not To Hold: Creating Guidelines for Management of Unexplained Child Death

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Study Title: To Hold or Not To Hold: Creating Guidelines for Management of Unexplained Child Death
Approved by the Institutional Review Board of Hackensack University Medical Center- November 2011.
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Dear Parent, Grandparent, Step-parent or Guardian,

You are being invited to participate in this descriptive research survey that will examine your personal experience with professionals and the timeline and frequency of events that occurred after the death of your child. The purpose of this survey is to collect information regarding the current standard of care received from professionals after the sudden and unexpected death of a child. Your participation will involve completing this survey which will take approximately 30 minutes.

The benefits of participating in this research study include contributing to the current body of knowledge regarding the standard of care newly bereaved parents receive from professionals. This information will be used to inform guidelines for professionals when working with families after the sudden and unexpected death of a child. Please be advised that a risk of participation may include discomfort or negative emotions. Some of the questions request specific information surrounding your child’s death. You may stop the survey anytime. If you feel you need additional support after completing this survey you may contact SUDC program at 1-800-620-SUDC, please note this is not a hotline or monitored 24 hours. For immediate assistance please contact the National Crisis Lifeline at 1-800-273-8255 which is available 24 hours per day, seven days per week, you can go to your local emergency room, or dial your local emergency department (9-1-1). You may also find a therapist in your area at www.psychologytoday.com or www.helpstartshere.org/find-a-social-worker.

The survey questions will not ask for, or collect, any identifying information or be linked to you in any way. There will be no compensation for your participation in this study. You have the right to skip any question you do not wish to answer and you may stop the survey at anytime.
By clicking the NEXT button below I acknowledge that I have read and understand the information above and I am agreeing to participate in this study.

Sincerely,
Laura Crandall
Assistant Executive Director for Advocacy
Program Director and Co-Founder SUDC program
The CJ Foundation
1-800-620-SUDC

Becky Rudd PhD, LMFT, LMHC, NCC 1(509) 879-4860

Lisa Marain, MSW, LCSW
Support Service Coordinator, SUDC Program
Senior Social Worker at The Joseph M, Sanzari Children’s Hospital
Hackensack University Medical Center
1-800-620-SUDC