Entering the 25th year of publication, The Journal of Perinatal & Neonatal Nursing remains dedicated to providing practical, comprehensive, up-to-date, and reliable information from top perinatal and neonatal clinicians. This issue (25:1) of the Journal of Perinatal and Neonatal Nursing focuses on the issues of perinatal and neonatal loss and bereavement, a topic of increasing interest among nurses providing care for women and families who face life-threatening or life-limiting fetal and neonatal conditions. Kristen Swanson, PhD, RN, FAAN, opens this issue with a comment on the history and development of research related to perinatal loss. Dr Swanson's early work on miscarriage and caring theory sets the stage for evidence-based nursing care for these families.
In the perinatal section, under the guidance of guest editors, Beth Perry Black, PhD, RN, and Elisabeth Howard, PhD, CNM, several authors examine the complex issues related to the care of expectant women and families who have severe fetal defects or when pregnancy ends extremely prematurely. First, Black explores the issue of truth telling in context of a severe fetal defect, using a virtue ethics framework in examining the burdensome issues for women and their partners in the aftermath of learning that their fetuses are likely to die. Lathrop reports on the processes related to continuity and change for women whose fetuses are lethally impaired and who receive end-of-life care under the rubric of perinatal hospice. Moro Kavanaugh et al. use 5 case studies to explore crucial end-of-life decision making by parents whose infants are born on the edge of viability.
How best to provide care for women and families affected by perinatal loss is addressed in 2 articles. Kolbie and Limbo detail the implemention of a perinatal end-of-life program based on an existing perinatal bereavement program, drawing distinctions between these types of care. Finally, Moore, Parrish, and Black report on a comprehensive review of the literature on interconception care by nurses with couples who have experienced a perinatal loss, in advance of the woman's subsequent pregnancy.
We make a distinction in these scholarly articles between the terms fetus and infant/baby and between women/men and mothers/fathers/parents. We use fetus rather than more colloquial or lay terms baby or unborn child, preferring the scientific term for the in utero entity. Participants’ quotes are verbatim, so references to “the baby” are their exact words. Similarly, we use women/men/couples in reference to persons before the birth of a live-born neonate. The social identity of mother or father may not apply to participants before birth, and thus, we use more neutral terminology in reference to female and male participants. Their narratives may contain their own constructions of relationships with the fetus; however, we do not assume that pregnancy per se imbues women and their partners with a parental identity.
This collection of articles reflects the complexities of caring for women and families who face life-threatening or life-limiting fetal and neonatal conditions. The examination of loss in this context provides utility for guiding the practice of perinatal nursing.
Terminal illness and neonatal death are realities in the neonatal intensive care unit (NICU) leading neonatal nurses and other members of the interprofessional team to seek ways of learning about grief and providing support. The neonatal manuscripts for this volume focus on 3 areas of bereavement-related care, specifically palliative care, intergenerational bereavement support, and neonatal end-of-life spiritual support.
The Continuing Education article by Rosenbaum, Smith, and Zollfrank emphasizes the role of healthcare team members in supporting parents through the loss of their baby by providing comprehensive care focused on physical, spiritual, religious, and existential needs of parents and families. Healthcare providers may have varying degrees of comfort with spiritual and religious support and may also need to incorporate parent and family needs in these areas into planning care, communicating, framing difficult conversations, and providing support. NICU providers do not need to hold the same belief system as parents, but understanding parents’ beliefs may help caregivers understand how these beliefs influence decision making by families.
Dutcher and colleagues describe the development of a model of neonatal advanced care planning through a perinatal palliative care unit consult approach. The authors use a case study to show how the described palliative care interdisciplinary model assisted in meeting the anticipatory grief and bereavement needs of a family who received an antenatal diagnosis of their baby having a life-threatening condition.
Roose and Blanford provide a description and evaluation of intergenerational support services and education offered through a hospital-based perinatal bereavement program. They used written surveys and phone follow-up to evaluate the usefulness of bereavement services for parents, siblings, and grandparents. Parents indicated that when siblings and grandparents were included in bereavement program services and educational offerings, the services were useful to the entire family.
Beth Perry Black, PhD, RN
Elizabeth Howard, PhD, CNM
Perinatal Guest Editors
Susan Bakewell-Sachs, PhD, RN, APRN,BC