Unnatural Tragedies and the Nature of Traumatic Grief
Joanne Cacciatore, PhD

Little is understood about the nature and trajectory of traumatic grief in perinatal death. Current standards of practice, even in bereavement care, overlook the trauma inherent for many families after perinatal death. This session will review the biopsychosocial nuances of perinatal death and its relationship to traumatic grief. Participants will learn effective, immediate, and long-term caregiving and what trauma informed compassionate care looks like.

Hoping for a Miracle: Palliative Care . . . The Beginning
Bernadette Flynn-Kelton BSN, RN, IBCLC, RLC and Susan Straszynski MSN, RN, RNC-OB, C-EFM, CPLC

This presentation will provide attendees with the beginning steps to create an evidence-based palliative care program. Curriculum content will include methods for developing an interdisciplinary collaborative program to meet the individualized needs of families. Speakers will share personal experiences and methods used to create relationships with families and guide them through decision making and palliative care options. The presentation will conclude with a video documentation of a journey through preserving hope, birth, and death.

Managing Ambiguity: Caring for a Mother Experiencing a Stillbirth
Natasha Nurse-Clarke, PhD, RN

This session will present the results of a recent dissertation study aimed at describing and conceptualizing the experiences and processes involved when labor and delivery nurses provide care to women experiencing a stillbirth. The theory, “Managing Ambiguity,” emerged as the basic social process of how nurses struggle to care for a mother whose baby was stillborn. This theoretical underpinning summed up the substance of what was occurring when nurses cared for a mother experiencing a stillbirth and was characterized in three different categories: experiencing a spectrum of emotions, managing the ambiguous patient, and managing institutional ambiguity.

Beyond Traditional Keepsakes: Creating Intangible Memories Through Meaningful Experiences.
Heather Eppelheimer, CCLS, CPLC  

There has been increased attention given to the importance of creating tangible keepsakes for families during bereavement. However, equal attention should be given to the importance of offering bonding opportunities through normalizing experiences and supporting family rituals. Myths, misconceptions, and personal biases can all be barriers in creatively adapting care and supporting the needs of families. This session will explore how care can be personalized through meaningful experiences and address how to work through potential barriers.

Perinatal Mood and Anxiety Disorders and the Intersection with Grief and Loss
Birdie Gunyon Meyer, RN, MA, PMH-C   

Many institutions still do not teach basic knowledge of Perinatal Mood and Anxiety Disorders (PMADS), leaving patients without care and treatment and tragic consequences. This concurrent session will provide attendees the basic accurate knowledge of perinatal mood and anxiety disorders, treatment options, and resources available. As the title indicates, the presenter will focus on PMADS and their relationship to perinatal grief and loss, providing a specific context to the preconference on PMADS.

Perinatal Bereavement Care in Scotland: An Ethnographic Study
Denise Côté-Arsenault, PhD, RN, CPLC, FNAP, FAAN

In this session the participant will learn about the ethnographic study conducted in Edinburgh, Scotland. Immersion in the culture of perinatal bereavement care, specifically through attending multiple support groups for bereaved parents and interviewing midwives who care for bereaved families in the hospital and community, led to new understanding of the influence a national health service in a culture other than the US has on post-loss care. Through photographs, case studies, policy analysis, and reflection on differences in approaches, the session features multiple implications for US care providers.

An Interactive Discussion with a Panel of Experts: Innovations in Perinatal and Neonatal Palliative Care
Brian S. Carter, MD; Emilie Lamberg Jones, BSW, RN, C-EFM, CPLC, Terri Major-Kincade MD, Meghaan R. Nguyen, MSW, CCLS and moderator Rana Limbo, PhD, RN, CPLC, FAAN  

PLIDA is proud to offer a multidisciplinary panel of known experts to present the latest research and clinical practice in perinatal and neonatal palliative care. Each presenter will speak individually and, as a group, respond to audience questions. With two physicians, advance practice and nurse researcher, child life specialist, and fetal therapy nurse both with additional training as a social worker as speakers, this unique educational experience promises to bring you new ideas, challenging reflections, and hope for growing competencies in caring for families who experience perinatal and neonatal palliative care.

Carefarming, Abused Animals, and the Natural World: The Selah Model for Traumatic Grief
Joanne Cacciatore, PhD

Most providers do not understand restorative spaces and therapeutic communities, taking a more individualized rather than socialized approach to traumatic grief. This session will introduce participants to a novel green care intervention to help those suffering the biopsychosocial effects of traumatic grief. Participants will explore the elements of restorative spaces and therapeutic communities.

Integration of Perinatal Bereavement Practices into Fetal Therapy Care Coordination
Emilie Lamberg Jones, BSW, RN, C-EFM, CPLC

How can we take the concepts of perinatal palliative care planning and apply them to our care of all families after any fetal diagnosis? We’ll discuss ways to support families as they identify their goals and individualize their care plans. Discussion will include guiding families through options for decision making during the pregnancy, fetal intervention, neonatal intervention, memory making during the pregnancy, and the role of fetal care coordination.

"I Love Your Tiny Hands, Your Bright Smile, Your Buppin Nose” Music Therapy, Bonding, and Legacy Building
Morgan Wood MT-BC

Music is a powerful tool. It is ever present across all ages and cultures. When utilized by a board-certified music therapist, music can promote bonding, connection, legacy building, and healing for patients and their families. This presentation will explore the journey of a mother, her baby, and a music therapist during their time together at a pediatric hospital. The presenter will share the scope of music therapy treatment with this family, interventions used, personal experiences, and will explore clinician and staff coping with the death of a patient.

Perinatal Loss: The Critical Role of Place/Belonging and Protection
Elizabeth Levang, Ph.D. and Curtis Levang, Ph.D.              

Perinatal loss is often viewed as psychological trauma due to its far-ranging impact. We propose a new approach to perinatal loss that provides a necessary and valuable link between basic developmental needs and psychological trauma. This session will present a new paradigm of healing that will form a common understanding of the loss experience with the care team and improve the care of women and their families.

Perinatal Care Clinic: Establishing a Road Map for a Family’s Complex Medical Journey
Sheila B. Frascht, RN, BSN, CHPPN, CPLC and Brenda Haag, RN, BSN, CPN

Perinatal Care Clinic (PCC) at University of Iowa Hospitals and Clinics (UIHC) utilizes a family care conference model to provide information to high-risk OB patients expecting a baby with a complex medical condition. This collaboration between the OB department and the children’s hospital focuses on birth care planning and the development of a post-delivery plan of care. This team approach benefits patients, families, and care providers, and ensures meaningful conversations that will guide care that is most aligned with a family’s goals of care for their baby.

In Their Own Words: Supporting the Sibling Bond
Meghaan R. Nguyen, MSW, CCLS

The bond between an unborn baby and siblings can develop prior to birth and continue even after death. In times of bereavement, families frequently seek guidance from staff in how to support the needs of surviving siblings. Recognition and support of the sibling bond is important in the process of meeting their needs. In this session, siblings will describe their relationship with their deceased sibling and share important parts of that relationship, which is remembered and valued throughout their lifetime.         

Pregnancy Management Options Following a Fetal Anomaly: How Caregivers and Healthcare Providers Can Serve as Patient Advocate when Discussing Termination
Arti Ramdaney, MS, CGC

The finding of a fetal anomaly in pregnancy is often unexpected and may shatter a family's expectations for a normal pregnancy. In such circumstances, families face several decisions in management of the pregnancy, including the option to continue the pregnancy, adoption, and termination. This session aims to help participants better facilitate discussions on reproductive management options to patients and families in various situations and recognize barriers that exist for patients/families.

Understanding Perinatal Palliative Care Coordinator Roles: “Meeting the Family Where They’re At”
Denise Côté-Arsenault, PhD, RN, CPLC, FNAP, FAAN and Erin M. Denney-Koelsch, MD, FAAHPM   

In this session, the results of an interview study of 12 expert perinatal palliative care coordinators from across the country will be presented. Using their overarching philosophy of care, the presenters will describe their goals for patient care, the tasks they undergo, and the roles they play in facilitating improved care for patients and families facing life-limiting prenatal diagnoses. In the final 15 minutes, participants will work through a case study as a care coordinator to understand implications for practice.  

Understanding Nurses’ Experiences of Caring for the Child who is Dying Through a Relational Ethics Lens
Karlie DeAngelis, RN, BNSc, MScN

Caring for children who are dying requires exploration to understand and validate the meaning of this lived experience for nurses. This session poses the question: What is the meaning of caring for a dying child for nurses within their ethical commitments and responsibilities? Guided by relational ethics and visual expression, five thematic patterns are presented: a) Careful cultivation of a team approach shapes end-of-life decisions; b) Resilience and affirming of self as nurse arise with alleviating suffering; c) Navigating sustained turmoil; d) Willingly sojourning in loving presence; and, e) Facilitating and valuing a family’s role in their experience of end-of-life.

How to Recognize and Deal with Shame in Pregnancy Loss
Irena Milentijevic, PsyD

Shame is an essential part of grieving that is often ignored. Currently, most of the focus is on grief following pregnancy loss, while women experience a range of feelings. In this session, Dr. Milentijevic will help participants to recognize and address shame in women after pregnancy loss.

Paternal Perinatal Mental Health Disorders after Perinatal Loss
Elyse Springer, MA-CLP, LMFT, PMH-C                    

Perinatal loss impacts fathers profoundly, but they do not always receive the kind of support they need. Gaps in knowledge around Paternal Perinatal Mental Health Disorders (PPMHD) and their intersection with perinatal loss, along with stigma and bias around men’s experience of loss, impacts the whole family system, and has significant clinical implications for future pregnancies and childrearing. This session focuses on increasing participants’ skill in recognizing, referring, and treating PPMHD following perinatal loss.

Presentation of Paper Close to Home: Care in a Community Hospital
Tammy Ruiz Ziegler BSN RN CPLC

Community based hospitals have unique characteristics which could be optimized to provide excellent perinatal palliative care to the families who live close by. Have you dismissed the idea of starting a perinatal palliative support service in your medium or small city? Come learn why the community setting might be an excellent place to provide comprehensive, family centered, affordable, compassionate and competent palliative care to babies born to the families in your area. Presentation based on presenter’s article on Advances in Neonatal Care Special Series, June 2020.

“Loving Wyatt: A Journey Through Infant Loss and Recurrent Pregnancy Loss”
Mandy Kelso, Author                     

Join author and artist Mandy Kelso as she describes the many phases and faces of grief experienced after child loss and through years of recurrent pregnancy losses (12 miscarriages over the course of 4 years). She will read excerpts from her book entitled Poems for Wyatt (published November 2018) and share original artwork produced throughout her family’s ongoing grief and transformation. Mandy and her husband, Robbie Kelso, will engage with audience members in a conversation that will add depth and meaning to their story told through art, poetry, and rich narrative.

Creating a Self-Care Roadmap to Buffer Secondary Trauma
Kiley Hanish, OTD, OTR/L and Jodie Hnatkovich, LPC, PMH-C, CPLC

Increasing Cultural Humility in Clinical Practice with Transgender and Non-Binary Individuals
Kaitlyn O’Donnell, MSW, LCSW 

In clinical practice with transgender and non-binary individuals, a population who has been historically marginalized and mistreated, it is vital for all professionals to practice from a place of awareness and cultural humility. This presentation establishes foundational knowledge for educated, affirming interactions with transgender and non-binary individuals, with the goal of improving care settings and organizational environments. By learning relevant terminology, statistics about disparities faced by this population, and tangible skills for improving clinical practice and environments, we move toward a more inclusive, equitable future.

Psychological Outcomes Following Pregnancy Loss
Agata Freedle, PhD, LPC, NCC

Historically, research has focused on parental grief reactions and affective responses following pregnancy loss. Extant literature shows that women can experience negative mental health outcomes following pregnancy loss such as symptoms of depression, anxiety, and acute and posttraumatic stress disorder. However, there is a growing recognition that in order to fully understand the psychological outcomes following a traumatic event, negative as well as positive transformations the individual may undergo need to be considered. This presentation will focus on increasing participants’ understanding of differential outcomes following pregnancy loss.

Arab Muslim Immigrants’ Perceptions of Perinatal Loss Care in the USA
Marianne H. Hutti, PhD, WHNP-BC, FAANP, FAAN

In the US, Islam is the fastest growing religion, and women of color and women who are immigrants from developing countries are at highest risk of perinatal loss. Cultural values have a major influence on the significance and impact of the loss for parents. This session will review literature-supported Islamic perspectives on fetal and infant death, bereavement, and mourning rituals. These will be compared with the perceptions of 79 Arab Muslim adult immigrants who completed an investigator-developed survey regarding US perinatal bereavement practices. Participants will compare the study findings to the literature to determine discrepancies and suggestions regarding care.

Capturing the Voices of Bereaved Parents: The Creation of Videos to Educate Healthcare Professionals on Skilled and Compassionate Bereavement Care
Michelle La Fontaine, BAA, CLS and Megan Fockler, RN MPH

In order to advocate for an increased incorporation of the lived experience of bereaved parents in educational strategies, PAIL Network created three new videos in 2019 where families were asked about their experiences of both helpful and hurtful bereavement care. The first Canadian videos of their kind, they allow professionals to hear directly from families and to advance best practice and quality improvement in education while engaging with families as partners. In this session, participants will explore how incorporating the parent voice into all aspects of perinatal bereavement education supports best practices and creates opportunities to improve their own bereavement care for families.

Reducing the “Cost of Caring” after Perinatal Loss
Marianne H. Hutti, PhD, WHNP-BC, FAANP, FAAN

Caring for families who have experienced the trauma of losing a much-loved baby through miscarriage, stillbirth, or newborn death may be difficult and heart-wrenching. This work affects the emotional, physical, and spiritual aspects of clinicians’ lives. Clinicians must nurture and care for themselves, as well, to make sure the personal cost of such caring is not excessive. This session will review the research related to perinatal loss and compassion fatigue symptoms, risk and protective factors, and provide practical, innovative suggestions for self-care to enable clinicians to continue with this critically important and tender work.