Invisible Loss: A Delphi Approach to Develop A Term for Individuals Who Experienced Perinatal Loss

ABSTRACT

The purpose of this Delphi pilot study was to 1) identify potential benefits to people who experienced perinatal loss if a term were established; 2) develop a term for people who experienced a perinatal loss because, at present, no term exists; and, 3) identify areas of consensus and contention between perinatal loss professionals and parents when considering terminology. Fifty-five participants (perinatal loss professionals, n = 33; perinatally bereaved parents, n = 22) proposed, reviewed, and rated terms through three rounds of surveys until bereaved parent was selected. Top terms were equally preferred between parents and professionals and, in general, participants described benefits to term development. Findings provide the perinatal loss community a first step in considering terminology.

KEYWORDS:

• Bereaved parent
• Delphi methodology
• disenfranchised grief
• perinatal loss
• pregnancy loss

Acknowledgments

In conducting the present study, we would like to acknowledge and thank the tremendous efforts of the expert panel of parents and professionals in the field of perinatal loss that made this project possible*:

Allison Rogers MSN, RN, CEN, perinatal loss experience

Anonymous Parent 1

Anonymous Parent 2

Bereaved Mother/RN Care Manager

Chandra L Clark

Christine A Pinto

Clinical psychologist

Cynthia D Lovan RNC-OB

Deborah Mueller, RN, BSN, CPLC

Dezna Napier

Dvora Entin, LCSW

Elizabeth Shaeffer, BSN, RN, CPLC

Erin Bull RNC-NIC, BSN, CPLC, CHPPN

Jeannie Zuk, PhD, RN University of Colorado School of Medicine

Joni Cutshaw BSN, RNC, CPLC, CCAP Franciscan Health Indianapolis

Judy Philbrook, MSN, NNP-BC; Co-Coordinator, Neonatal Advanced Practice Service; Cape Fear Valley Medical Center; Fayetteville, NC

Julie Evans, LCSW

Kathy Perko, MS, CPNP, CPLC

Karen Kavanaugh, PhD, RN, FAAN; Senior Nurse Scientist, Children’s Hospital of Wisconsin

Lindsey J. Wimmer, RN, CPNP, CPLC

Lisa M Wuertz

Marcia Meyer Jenkins RN CPLC

Melanie Chichester, BSN, RNC-OB, CPLC

Melissa Petersen, RNC, MS, WHNP-BC

Mommyof5angels

Moshe Winograd, Ph.D.

Nadiya Dolce, MSW, LCSW

Nancy Ann Ferguson

Patti Budnik; National Share Pregnancy & Infant Loss Support

Rana Limbo, PhD, RN, CPLC, FAAN

Rayna D. Markin, PhD

Rev. Beth Mosier, MDiv, BCC, CPLC

RN and professional board-certified chaplain

Rosmarie E. Roose MSN, RNC

Tammy Ruiz Ziegler RN CPLC

Theresa K. Liberatori, PhD, LCSW-C, CPLC

Vincent Kowalski

William Dolce, MBA

*Authors received express permission from participants for acknowledgments. Names appear as requested by participants.