Thank you to the 2018 IPBC Concurrent Speakers!
A Peer Support Model in the Face of Changing Healthcare Realities
Nancy Berlow, LCSW
Many programs led by professional staff are underfunded, which can limit the number of families served. Berlow’s workshop addresses this dilemma and presents a model of peer support provided by The Pregnancy Loss Support Program (PLSP), which offers phone counseling and support groups led by professionally trained peer counselors who have themselves experienced a loss. The purpose of this session is to provide participants with the framework and tools to integrate volunteer peer support into their bereavement work.
Perinatal Death and Bereavement Care Across the World: Updates from the International Stillbirth Alliance
Katherine J. Gold, MD MSW MS
This interactive workshop will give participants the opportunity to put perinatal loss into a global context. Gold will delve into how perinatal death is and is not included in major global initiatives on maternal child health and the role of the International Stillbirth Alliance for researchers, clinicians and parents. Participants will discuss how a greater understanding of efforts around the world can lead to reduced loss and advocate for respectful, evidence-based care. Additionally, participants will examine the barriers to respectful care and how to address these barriers moving forward.
Words Matter: Courageous Conversations in the NICU
Monica Holland, BSN CHPPN & Kathy Perko, MS, CPNP, CHPPN, CPLC
Courageous conversations are often characterized by an exchange of difficult information between families and those providing care for their infants. The quality of these conversations can be enhanced by educating interdisciplinary members about the importance of the thoughtful choice of words in conveying honest and accurate information to families. Understanding the importance of mindful communication and reworking our vocabulary to empathetically and truthfully address the issue at hand will be the focus of this presentation.
Antepartum Support Group for Hospitalized High Risk Pregnant Moms and Their Families
Laura Navarro Pickens, MSW, LCSW
Pregnant moms who are hospitalized due to high risk pregnancy need support to get through their pregnancies while away from home. This presentation will introduce skills to assess these mothers, recognize their current coping mechanisms, while teaching new ways of coping with negative emotions. Attendees will learn how to help mothers deal with their loss and concerns so that growth and resilience as a mother are maximized.
Transition to Parenthood: A Developmental Model for Understanding the Psychosocial Impact of Pregnancy Loss and the Appropriate Use of Guided Participation as a Multidisciplinary Intervention.
Deborah Rich, PhD, Licensed Psychologist, CPLC
Considering pregnancy loss as a rupture in a normal developmental process opens the door to normalizing the stages of new challenge, adaptation and competence. This session will provide caregivers with tools for supportive interventions that can be applied, across patient care and follow-up settings.
Utilization of Evidence Based Perinatal Loss Training Program for Doulas
Marie A. Walter MS, RN, C-EFM, CPLC & Jennifer Hicks, MSN, RN, CD(DONA)
The presenters will discuss the role of the doula in the obstetric arena with particular focus on doulas dealing with patients experiencing perinatal loss. Unique aspects of the role will be highlighted. The proposed preparation and training for doulas providing this type of service to their clients will be outlined. The results of two pilot training programs will be shared with participants with potential suggestions for improvement.
Creating Intentional Communities of Bereaved Parents by Structuring Safe, Inclusive Support Groups
Patti Budnik BSN, CPLC & Carol McMurrich, BA, EdM
This advocacy seminar will encourage all participants to think critically about how support groups play an important role in creating community for bereaved parents. It will model novel facilitation and referral methods. In this seminar all participants- whether they are involved in support group work or are hospital professionals- will discover ways that they can advocate for effective support groups that allow diverse groups of bereaved parents to have true community around a shared experience.
Empirical Investigations of Pregnancy Loss: Diverse Women’s Experiences and Educating Medical Professionals
Pamela A. Geller, Ph.D.
This workshop will provide valuable information about the psychosocial aspects of pregnancy loss. Geller will report on findings of a study identifying risk factors for negative mental health outcomes among women, as well as provide information on training medical students and OB/GYN residents to effectively support and work with women through introduction of a novel electronic curriculum to multidisciplinary fields.
Experiential Teaching and Support in Perinatal Bereavement
Aviva Kleinman BSc, BSN, RN, C-MNN, IBCLC; Erin Lauinger, MSW, LCSW; Kathleen DeMarco MSN/ED, RN, NE-BC, CPHQ
Staff support is often lacking in bereavement programs, yet when staff is confident in their practice and feel supported, compassion fatigue and attrition diminish, and quality of care improves. Those who attend this workshop will leave with the knowledge and skills to implement experiential education and support, which will increase confidence and help in coping with the difficulties inherent to providing bereavement care.
Clinical Practice Guidelines to Support Respectful Disposition with Early Pregnancy Loss
Elizabeth Levang, Ph.D. & Tammara Ruiz Ziegler RN, CPLC
Understanding the concept of respectful disposition and the necessity of protocols and policies is critical to providing quality patient and family centered care. This workshop will address the concept of Respectful Fetal Disposition, the principles of respectful disposition, informed consent, and the necessity of protocols and polices within healthcare institutions. Participants will be challenged to advocate for additions/corrections/changes in institutional policy if needed in compliance with their local laws.
System-Wide Development and Implementation of Standards of Care for Perinatal/Pediatric Loss
Danielle Penman, BSN
This learning activity will describe the journey of 12 hospitals in a health care system where there was not a preexisting standard of care for families experiencing the death of their baby or child. Participants will gain knowledge and skills to create or revitalize a sustainable standardized bereavement program at their institution as well as review strategies that will enable them to maintain a high-quality program.
Moral Distress: “It Just Doesn’t Seem Right”: A Case Study
Kathy Perko MS, CPNP, CHPPN, CPLC & Monica Holland BSN, CHPPN
Increased patient acuity and nursing demands can lead to moral distress. The purpose of this workshop is to help participants develop increase in knowledge of the foundations of moral distress and will develop a 3-item self-care plan to deal with moral distress.
The Role of Genetics in the Care of the Critically Ill Infant
Marisa Andrews, MS, CGC and Rebecca Carter, MS, CGC
Options for genetic testing are rapidly changing, and many providers involved in the care of families with fetal or neonatal losses are unaware of the most appropriate and efficient testing options for their patients in potentially identifying an underlying diagnosis. This workshop will promote awareness regarding the role of genetic counselors and genetic testing to improve care for critically ill infants and their families.
When Mental Illness and Perinatal Loss Collide
Lisa Burke, BA(Hons), MHst, DPsy, FT
Professionals working with women in perinatal settings may not have received formal training in mental illness, nor feel confident in recognizing those women who may be at greater risk of perinatal loss and/or complications in perinatal grief. In this session, Burke will detail epidemiological evidence investigating perinatal bereavement and mental illness, and foster appreciation of the translation of such research into practice.
“We want to do what’s best”: Parental Decision-Making in Pregnancies with Life-Threatening Fetal Diagnoses
Denise Cote-Arsenault, PhD, RN, FNAP, FAAN & Erin M Denney-Koelsch, MD
Health care providers often struggle with how to help families in their decision-making process when they discover their baby has a life-threatening condition. Through qualitative interviews of couples during pregnancy processes of couple decision-making were identified and will be described. Those who attend this session will leave with a greater understanding of the many factors that parents consider and the process by which they make difficult medical and personal decisions in the face of their baby’s life-threatening condition.
The Full Scope of Legacy Building for Families within Perinatal Bereavement Care
Heather Eppelheimer, CCLS
Often, the focus of memory making for perinatal and neonatal deaths is on the parents of the deceased child, and siblings can take a back seat. This presentation aims to focus on sibling-specific keepsakes. Additionally, the presenter will discuss legacy building practices to include first trimester loss and losses where typical keepsakes (i.e. molds, ink prints etc.) may not be able to be created. Participants will leave with fresh ideas to bring to their bereavement practices.
The Ripple Effect of Perinatal Loss: Impact on Grandparents and Adult Siblings
Joann O’Leary, PhD, MPH, MS & Annette Klein RN
Grandparents can find themselves at a loss as to ways to support their adult bereaved child and cope with their own grief. This can also be true for adult siblings. This presentation will address helping both grandparents and bereaved parents gain an understanding of moving forward with the changed family dynamics.
The Scraps of the Heart Project: Storying Perinatal Loss Through a Narrative Art- and Community-Based Research Collective
Erin K. Willer, Ph.D.
This presentation will focus on The Scraps of the Heart Project www.scrapsoftheheartproject.com, a community and narrative arts-based research collective of bereaved parents, healthcare providers, artists, researchers, and students. The presentation will demonstrate how our creative arts workshops for bereaved parents, service learning projects with undergraduate and graduate students, and a community art exhibit have functioned to empower families and educate communities about perinatal loss
Developmentally Supportive Care: Understanding Parents’ Compelling Developmental Tasks and How Quality Perinatal Bereavement Care Helps Parents Fulfill Them
Deborah L. Davis, PhD
This session illuminates 4 developmental tasks that propel parents along a path of healthy adjustment following their baby’s death. Participants will explore the parent’s compelling developmental arc and how it relates to bereavement care. You will (1) gain insight into the biological, emotional, psychological, and spiritual imperatives parents face; (2) boost your understanding of parents’ behavior and desires; (3) consider another level of why and how to implement the various interventions of quality perinatal bereavement care.
Perinatal Loss and the Funeral Home Experience
Kelly Karavousanos, LPC
Planning a funeral or memorial service is not something most parents think about when they are expecting a baby. Karavousanos’ session will guide participants through the process of the significant role funeral homes play in guiding and supporting families planning a meaningful farewell service for their baby as well as the importance and impact the goodbye ritual can have on the family’s future healing.
HUGS Peer Support for Grieving Families
Claire Matejka, BS and Amy Helt RN
While many hospitals provide excellent bereavement care to parents at the time of their loss and throughout their hospital stay, there is often a lack of care and support once the parents leave the hospital, and they may have little support out in their community. This workshop describes the HUGS program, and participants will learn how to implement a peer support program for the newly bereaved as a Standard of Care for all patients and their families.
When a Mother Dies: A Tale of Two Case Studies
Meghaan Nguyen, MSW, CCLS & Paige DelCastillo, BSN, RNC-OB
As maternal death rates continue to rise, there is an increased demand to meet the needs of the surviving baby and the additional members of the family unit. The case studies presented in this session will address: Providing legacy, education regarding the death and helping the family say goodbye. Nguyen and DelCastillo will also discuss the unique demands and challenges placed on the staff when a mother dies.
Decreasing Harm Related to Fetal Remains Disposition in the Obstetric Department/Emergency Department/Operating Room Setting
Amy Schmidt, MPH, CHES and Christine Giardino, BSN, RN
Proper and respectful disposition of fetal remains is a critical facet of administering compassionate care for patients who experience a pregnancy loss. This session will prepare caregivers to be better equipped to implement a protocol for respectful care and final disposition at their institutions, thereby avoiding mistakes, improving patient care, and decreasing harm that can occur when remains are handled in inappropriate ways.
Working with Perioperative Nurses to Increase Participation and Bereavement Support in Necessary Termination of Pregnancies: A Delicate Balance
Anita Catlin, DNSc, FNP, FAAN
In this workshop, Dr. Catlin will explore the sensitive topic of the nurse’s role when a pregnancy is being terminated due to genetic anomalies or when a baby has already died and needs to be surgically removed. She will provide information on Codes of Ethics, nurses’ rights to object, process and procedures, and she will explain what a pregnancy termination is and what is not. Participants will leave with an increased understanding of what it means to care for and offer bereavement support to patients in such situations.
Meeting Families Where They Are: Benefits of an Interdisciplinary, Community-Based Model of Perinatal Palliative Care
Alyssa W. Gupton, LCSW, ACHP-SW and Kate Klatt, MS, CCLS and Lauren Zwetsch, MS, RN, PNP
The purpose of this workshop is for attendees to learn of the importance of a community-based interdisciplinary perinatal palliative care team to address the biopsychosocial needs of a family anticipating or experiencing perinatal and/or infant loss. The presenters will explore how this interdisciplinary model of care enhances the short and long-term benefits of providing early and ongoing care and support to families anticipating/experiencing perinatal loss. Finally, the presenters will identify specific ways rituals and memory making activities help bereaved families heal.
“I Never Know What to Say:” Enhancing Communication Skills through End-of-Life Care Simulations Concurrent Session
Kathie Kobler, PhD, APN, PCNS-BC, CHPPN, FPCN
Health care professionals sometimes express a desire for ongoing avenues to refine their communication skills when caring for families experiencing perinatal/neonatal death. The purpose of this presentation is to provide insight into the role of interdisciplinary team facilitation of end-of-life simulation training for perinatal/neonatal team members, and to describe a successful simulation program with strategies for recreating at other sites.
How Does the Gestational Surrogate Grieve When the Baby Dies?
Irena Milentijevic, Psy.D. Licensed Psychologist
The impact of perinatal loss on gestational surrogate is often minimized as it is “not her baby,” and the clinical issue of grief is typically not fully recognized. There is no research on this subject, and only a handful of articles are available. This workshop will provide medical and mental health professionals with specific knowledge of grief reactions in gestational surrogates. Participants will improve their understanding of the issue and learn ways to give more sensitive care to bereaved gestational surrogates.
Gabriel’s Courage: In-utero Hospice Palliative Care for the Imperiled Newborn
Janet Stevens RNC-OB, CNE, CNL, CPLC, CBC, C-EFM, CCRN
Oftentimes, patients who are told of a life-limiting fetal diagnosis are not given choices on whether to proceed with their pregnancy and are encouraged to terminate the pregnancy via D & E. This limits the options parents are given to spend time with their baby. In this workshop, a model will be presented that hospitals can use to offer choices to patients so every parent suffering a perinatal loss can have an individualized plan of care that respects their values and mores.