Development of a Manualized Perinatal Bereavement Support Group

Perinatal loss is defined as the loss of an infant through death at any gestation of pregnancy (miscarriage, early loss, stillborn) up to 28 days after birth (Fenstermacher & Hupcey, 2013). Perinatal grief is linked to biosocial factors such as depression, anxiety, substance use, sleep disturbances, and PTSD. Unfortunately, perinatal bereavement support is limited for this specialized population. In 2022, 241 fetal losses (>20 weeks gestation) were reported in the state of Utah. Only two identified local support groups offer a focus on perinatal loss. An analysis of fetal loss data was collected and reviewed to identify the need for a Caring Connections Perinatal Bereavement support group. A review of current support groups and resources available to Utah parents was also tested. The original evidence-based Caring Connections grief support manualized program was revised and adapted to meet the needs of this specialized bereavement population. The 125-page Perinatal Bereavement Support manualized program was presented to Caring Connections for adoption into their program. Interventions: Creating 8-week grief support sessions explicitly focusing on perinatal loss. The Perinatal Bereavement manual has been adopted into the Caring Connections program. Once revisions and editing are complete, this manual will be reproduced for future participants and facilitators. Developing a Perinatal Bereavement manual to guide facilitators and participants during an 8-week support group can help lessen the burden of managing grief alone. Developing a Perinatal Bereavement Manualized Support Group to guide facilitators and participants during an 8-week support group can help lessen the burden of managing grief.

1 Development of a Manualized Perinatal Bereavement Support Group Brittany A. Bullock Kathie Supiano, Camille Hawkins, Jaymie Olsen-Maines, Melannie Green, Deborah Morgan College of Nursing: The University of Utah NURS 7703: DNP Scholarly Project April 8, 2023 2 Abstract Background: Perinatal loss is defined as the loss of an infant through death at any gestation of pregnancy (miscarriage, early loss, stillborn) up to 28 days after birth (Fenstermacher & Hupcey, 2013). Perinatal grief is linked to biosocial factors such as depression, anxiety, substance use, sleep disturbances, and PTSD. Unfortunately, perinatal bereavement support is limited for this specialized population. Local Problem: In 2022, 241 fetal losses (>20 weeks gestation) were reported in the state of Utah. Only two identified local support groups offer a focus on perinatal loss. Methods: An analysis of fetal loss data was collected and reviewed to identify the need for a Caring Connections Perinatal Bereavement support group. A review of current support groups and resources available to Utah parents was also tested. The original evidence-based Caring Connections grief support manualized program was revised and adapted to meet the needs of this specialized bereavement population. The 125-page Perinatal Bereavement Support manualized program was presented to Caring Connections for adoption into their program. Interventions: Creating 8-week grief support sessions explicitly focusing on perinatal loss. Results: The Perinatal Bereavement manual has been adopted into the Caring Connections program. Once revisions and editing are complete, this manual will be reproduced for future participants and facilitators. Developing a Perinatal Bereavement manual to guide facilitators and participants during an 8-week support group can help lessen the burden of managing grief alone. Conclusion: Developing a Perinatal Bereavement Manualized Support Group to guide facilitators and participants during an 8-week support group can help lessen the burden of managing grief. Keywords: bereavement, perinatal loss, fetal death, support, grief 3 Development of a Perinatal Bereavement Support Group Problem Description In 2020, 20,854 fetal deaths at or greater than 20 weeks gestation were reported in the United States. The fetal mortality rate was 5.74 deaths per 1,000 live births in 2020 (Gregory et al., 2022). However, it is essential to note that most states do not report fetal deaths before 20 weeks gestation. Pregnancy loss prior to reaching 20 weeks' gestation is called a miscarriage. It is estimated that around 26% of all pregnancies end in miscarriage and that nearly 80% of early pregnancy loss occurs before 12 weeks (Dugas & Slane, 2019). In 2020, the fetal mortality rate for Utah was 5.43 per 1,000 live births. A total of 248 fetal deaths over 20 weeks' gestation were reported in 2020 (Centers for Disease Control and Prevention, 2019). The Office of Vital Records & Statistics released birth data for 2022. Utah welcomed 47,060 new babies, while 241 fetal deaths were reported (Appendix A). Again, this number is likely grossly misrepresenting the total fetal losses, as deaths of less than 20 weeks gestation are not reported. Perinatal loss affects millions of individuals each year (Berry, 2022). Grief associated with perinatal loss creates a unique population of grieving parents that is not well supported. Stigmas surrounding perinatal loss strongly contribute to obscured grief and hesitation to seek support. Perinatal grief, viewed as a psychosocial construct, has been linked to outcomes such as depression, anxiety, sleep disturbances, eating disorders, suicidal ideation, posttraumatic stress disorder (PTSD), and substance abuse (Berry, 2022). The experience of grief is a normal response to death. However, when grief is prolonged and accompanied by nonadaptive thoughts and dysfunctional behaviors, it is called complicated grief. The incidence of perinatal loss developing into complicated grief is 25-75%. This is important to consider, as only 4% of the general population suffers from complicated grief outside perinatal loss (Berry, 2022). 4 Perinatal loss is often a traumatic experience, which can contribute to the likelihood of development of PTSD symptoms. Up to 60% of parents experience PTSD following a perinatal loss (Berry, 2022). The magnitude of perinatal loss, both from a statistical standpoint and as an emotionally distressing event, demands appropriate bereavement support. A Perinatal Bereavement Support Group for this specialized population would help decrease the incidence of complicated grief, PTSD symptoms, and many other biopsychosocial outcomes. Utah is currently limited in resource availability of grief support for this specialized population. Online and in-person support groups offered through Share Parents of Utah are ongoing, open groups, usually held twice a month. In addition, Chapters and Seasons, a therapist's private practice, offers an educational group twice a year titled "Healing Your Broken Heart after the Death of a Baby." The group meets virtually once weekly for six weeks; space is limited. No other Utah-based perinatal grief support groups were found. Available Knowledge Perinatal loss is defined as the loss of an infant through death (involuntary or unintended) at any gestation of pregnancy (miscarriage, early loss, stillborn) up to 28 days after birth (Fenstermacher & Hupcey, 2013). Perinatal loss is a unique form of grief. Perinatal bereavement is a specific type of loss that, until the mid-1980s, was not recognized as a significant loss by medical personnel (Fenstermacher & Hupcey, 2013). However, through advocacy by healthcare providers and organizations, support for this type of loss is becoming more prominent. Perinatal bereavement can affect both maternal and paternal mental health. In conjunction with perinatal loss, the prevalence of adverse outcomes such as anxiety, depression, complicated grief, and PTSD is widely unknown due to inconsistent measurements in clinical practice and research (Berry, 2022). However, emotional trauma was reported in 39% of women and 15% of men. The trauma associated with perinatal loss affected parents for up to twelve years following the loss. Diagnosis of PTSD was twice as high as anxiety or depression at one-year post-loss (Berry, 2022). 5 Grief support can be a powerful connective healing tool within a group setting. Caring Connections is a grief support program based in the University of Utah College of Nursing that strives to provide hope and comfort to those suffering from loss. Caring Connections was founded in 1997 by Beth Cole, Ph.D., and has provided grief support for participants and education to mental health providers since then. Caring Connections' support groups are manualized and guided by structured, evidence-based bereavement material. This distinguishes the program from open dialogue support groups because Caring Connections focuses on educational material in a supportive setting. In 2022, Caring Connections held 42 grief support groups for 351 participants, mainly via telehealth. They also train first responders, teachers, and community mental health workers with funds donated by the State of Utah Department of Health and Human Services. In 2022, Caring Connections completed four Grief of Sudden and Unexpected Death Training with 124 attendees, eleven Grief Suicide Death Trainings with 228 attendees, four Grief of Overdose Death Training with 44 attendees, and sixteen additional pieces of training within the community or for individual agencies at conferences. Currently, the University of Utah Caring Connections program does not offer a Perinatal Bereavement Support Group (current groups: Loss to Suicide, Loss to Overdose, Covid-19 Grief & Recovery, Loss of Spouse or Partner, Loss of Family Member or Friend). Caring Connections is a wellestablished program that offers trauma-informed, evidence-based, and compassionate bereavement care to Utah. Including a specialized Perinatal Bereavement support group in the Caring Connections program would be an appropriate addition to the existing groups. Rationale Understanding the significance of relationships and their impact on bereavement is essential. The Human-to-Human Relationship Model supports the value of relationships and serves as a robust theoretical framework for developing a perinatal bereavement support group manual. This model focuses on the interpersonal aspects of nursing with a narrowed focus on mental health. The model has seven fundamental concepts: suffering, nursing, hope, meaning, communication, self-therapy, and targeted intellectual approach. 6 The concept of suffering concerning grief is a universal experience. Grief is the common denominator when participants seek support, regardless of the circumstances of the death or relationship with the person they lost. Communication amongst others suffering can occur in a safe, structured environment. For eight weeks, relationships between participants evolve as they support and lean on one another. The notion of hope that, over time, grief will lessen and become more bearable is introduced and revisited throughout the program. The Human-to-Human Relationship Model is based on creating a genuine relationship established through interaction. All the concepts mentioned above are addressed through Caring Connections grief support programs. In addition, the manualized Perinatal Bereavement Support Group focused on building relationships through the experience of grief. Specific Aim This quality improvement project aimed to develop a Manualized Perinatal Grief Support Group to supplement the Caring Connections Program administered through the College of Nursing at the University of Utah. Methods Context This project occurred at the University of Utah within the College of Nursing, specifically with the Caring Connections program. Developing a perinatal bereavement support group involved input from content experts and the director of Caring Connections for specifics regarding grief support and program development. Caring Connections is a prominent community resource at the University of Utah College of Nursing, offering support for grief and bereavement. They provide evidence-based bereavement care via support groups facilitated by trained clinicians. The program includes the director (Dr. Kathie Supiano), administrative assistant Adrienne Bott, and many paid facilitators that keep the program running smoothly. University of Utah College of Nursing Psychiatric/Mental Health Nurse Practitioner students 7 can co-facilitate for Caring Connections support groups. It is an excellent opportunity to gain exposure to grief groups. Funding for Caring Connections comes from the State of Utah, CARES Act funds, scholarships from Larkin Mortuary, and other generous donations. The program is advertised on their website and through Caring Connections newsletters. Many participants come from word of mouth, and others who have participated in support groups found them helpful and recommended the program to family and friends. Participants pay a $50 fee to attend an 8-week support group. This fee is waived for those experiencing hardship so that anyone needing support is never turned away. In addition to Caring Connections, content experts included Camille Hawkins, Licensed Clinical Social Worker (LCSW)/therapist at Chapters & Seasons private practice, and Melanie Green and Jaymie Olsen-Maines, volunteer with Share Parents of Utah organization. All these women were selected as content experts for their work in supporting others through perinatal bereavement and have all experienced perinatal losses of their own. Their experiences provide valuable, empathetic, compassionate care to others in similar situations. In addition, their evaluation of manual content to ensure information was presented sensitively and respectfully was greatly appreciated. Interventions The initial intervention involved interviewing Dr. Kathie Supiano of Caring Connections to gauge the level of interest and need for developing a perinatal bereavement support group. This interview was followed by research via an internet search to identify perinatal bereavement support groups/resources that are currently available. In addition, correspondence with the University of Utah Hospital Office of Decedent Affairs to obtain data regarding fetal losses for inpatients to gather data for early losses not requiring hospitalization were conducted to determine the need for bereavement support. Contact via email to the University of Utah Family Planning Fellows to obtain early pregnancy loss data was redirected to Jessica Lewis-Caporal DNP, APRN, FNP-BC, Family Planning & OB/GYN Nurse Practitioner at the Early Pregnancy Assessment Clinic (EPAC). This clinic was established in April 2022 to decrease referrals to the emergency department by providing exceptional care for pregnant women with chief complaints of cramping or vaginal bleeding in the first trimester, up to 14 weeks 8 gestation (Appendix B & C). Losses before 20 weeks gestation are not generally reported to the state, so data from the EPAC will provide additional information regarding fetal loss within Utah and the subsequent need for grief support services. Jessica strongly supports the development of a Perinatal Bereavement Support Group that will be available to the population she serves. The second intervention involved the evaluation of evidence-based literature in developing the format for the perinatal bereavement manual and what topics/material would be included in each support group session. Database use included PubMed, EBSCO, and Google Scholar. Search terms included, "Perinatal Bereavement" "Fetal Loss," "Perinatal Grief Support," "Perinatal Loss," "Grief Perinatal Loss" "Impact of Perinatal Loss," "Perinatal Bereavement Education," and "Perinatal Bereavement Care."The original Caring Connections Grief Manual was also reviewed for content applicability. The literature search supported the notion that parents who experience a perinatal loss have a greater predisposition to suffer from depression, anxiety, and PTSD (Fernandez-Sola et al., 2020). Therefore, professional care based on emotional support and empathy is beneficial in helping parents through the grieving process. Support groups are influential in this type of loss (Fernández-Férez, 2021). One study found that support group sessions improved sleep and depression and potentialized the individual capacities of each person suffering a loss (Fernández-Férez, 2021). Another study found that, despite the devastation of perinatal loss for parents and the wider family, some parents can still develop new life skills and capacities through resilience when supported by others in a group setting (Burden et al., 2016). A study of participants in rural Minnesota aimed to identify resources (or lack of) for bereaved mothers who live rurally. Most participants "expressed an overwhelming need for continued contact with someone with a similar experience" and reported a lack of grief education and support resources (Domogalla, McCord, Morse, 2022). Caring Connections allows for rural participant inclusion and the ability to establish connections with those in similar grief circumstances via a virtual platform. The Perinatal Bereavement Support Group will be available to rural populations as well. 9 The third intervention involved adapting the original Caring Connections Grief Manual to tailor to perinatal bereavement and creating content for eight weeks of grief support sessions. This process involved taking each weekly session of the original manual and incorporating perinatal bereavementspecific content found during the literature search and information from content experts—another aspect of editing involved assessing existing manual content sensitive to fetal loss. An additional chapter was developed beyond the original manual to include material surrounding pregnancy after loss and expanded information on the loss of a child (initially a tiny section in the appendices). A guide for local resources was also included to ensure a continuation of support following the conclusion of the eight-week group. The manual was sent to Caring Connections and additional content experts for feedback to incorporate into the final editing stages. Finally, after manual completion, editing, and revisions, the fourth intervention involved the presentation of the completed manual to Dr. Supiano of Caring Connections as a proposal for the adoption of the Perinatal Bereavement Grief Support Group into the Caring Connections program. Study of the Intervention(s) Although this project's scope did not include implementing the manualized Perinatal Grief Support Group program, the project's impact was studied by surveying key partners regarding feasibility, usability, and satisfaction. In addition, the project focused on program development and assessing the adoption of the Perinatal Grief Support program into the Caring Connections program. This project involved collecting data about infant losses from the University of Utah Hospital Office of Decedent Affairs as well as the Early Pregnancy Loss Center (EPAC) to determine the incidence of loss and need for perinatal bereavement support, as well as an evaluation of existing programs/resources/support groups available in the community for this type of loss. The development of a manualized Perinatal Bereavement Support Group to supplement the existing Caring Connections involved a thorough literature review in identifying important content and topics to include, approval/input/content review from content experts to determine the efficacy and 10 validity of included material, and editing of Caring Connections original grief support manual to meet the needs of those experiencing perinatal loss and bereavement. The project's expected outcome will be adding a Perinatal Bereavement Support Group to the Caring Connections services for those experiencing loss developed with valuable input from content experts and supportive literature. Additional intervention studies, such as participant feedback, can be conducted after program implementation. Measures No survey instruments were utilized for this project. Data collection to support local fetal loss data involved contact via email and telephone with the University of Utah Hospital Office of Decedent Affairs regarding the number of fetal losses within the University of Utah healthcare system and correspondence with EPAC to gather data regarding early pregnancy losses not requiring hospitalization. Multiple calls and emails were sent to collect fetal loss data from the University of Utah Office of Decedent Affairs. Unfortunately, data specific to University of Utah Hospital fetal losses were never obtained, as the Decedent Affairs Coordinator needed more staffing to gather requested data. However, he sent data via the State Vital Records newsletter, which provided fetal loss data greater than 20 weeks gestation for Utah (Appendix A). A phone interview with Jessica Lewis-Caporal with the EPAC center discussed the need for relevant data to develop a manualized perinatal bereavement support group—knowledge of what the EPAC offers and education surrounding early pregnancy loss was obtained. In addition, data from EPAC was obtained in a Word document via email stating the goals of EPAC and the number of losses since opening in April 2022 (Appendix B). Caring Connections director Kathie Supiano requested an initial interview to discuss project ideas and the program's needs. With knowledge about my nursing background of twelve years in perinatal nursing, grief support associated with fetal loss in the hospital setting, and my specialized interest in perinatal mental health, Dr. Supiano presented the idea of creating a manualized perinatal bereavement support group program. This project proposal was approved, and initiation of manual development 11 ensued. Upon completion, the manual was submitted to Dr. Supiano for initial review, followed by a Zoom meeting to discuss content and manual edits. The content was discussed, and a chapter regarding pregnancy after loss was added. All manual edits were completed, and the manual was resubmitted to Dr. Supiano for final review and acceptance into the Caring Connections program. Email correspondence occurred over the past several months with content experts Camille Hawkins of Chapters & Seasons, Jaymie Maines, and Melanie Green of Share Parents. Initial presentation of the project and anticipated outcomes were introduced, as well as expressed need for their expertise in this specialized area of interest. Rough draft manuals were emailed to these content experts and were returned with valuable feedback and revision suggestions. All their work in perinatal loss and individual experiences with their fetal losses helped ensure that manual content was sensitive and appropriate. Assessment of feasibility included evaluating resources to support the continuation of the project. Caring Connections assumes responsibility for the manualized Perinatal Bereavement Support Group and its inclusion into its program. The advertisement strategy will include information about the new Perinatal Bereavement Support Group on their website and monthly newsletters. Advertising specific to this group will also be distributed to the EPAC and the Labor and Delivery unit of the University of Utah hospital and associated OB/GYN clinics. The intent to offer this support group to participants is ongoing. Regarding usability, the indication for implementing this specialized support group program has been demonstrated via fetal loss data on both local and national levels and limited resources currently available to support fetal loss. Content experts, including Dr. Supiano of Caring Connections, determined satisfaction through program review and adoption into the Caring Connections offerings. Manual content was deemed appropriate for perinatal loss grief support. Analysis For this project, qualitative data in semi-structured interviews and feedback was collected and analyzed. Semi-structured interviews took place with the University of Utah Hospital Office of Decedent Affairs and EPAC staff to obtain fetal loss data. In addition, notes were taken from meetings with content experts, and a descriptive analysis was conducted. A content analysis was performed, analyzing the notes 12 line by line to develop common categories and sub-categories. These categories were organized and summarized to inform the common themes of the content expert meetings. Ethical Considerations According to the University of Utah, this project was considered quality improvement and not subject to Institutional Review Board (IRB) oversight. Therefore, no potential competing interests or conflicts of interest are noted for this project. Results The first objective of this project was to collect data to support the need for developing a perinatal bereavement support group via Caring Connections. The plan was to collect fetal loss data from the University of Utah's Decedent Affairs office and the Early Pregnancy Assessment Center (EPAC) to support the need for further program development. Despite numerous efforts, data collection from Decedent Affairs for losses specific to the University of Utah was not obtained due to short staffing. However, they did provide data from the Office of Vital Records & Statistics February 2023 newsletter, stating that for the state of Utah, the number of fetal deaths was 241 as of December 31, 2022. Unfortunately, this data only provides fetal loss more significant than 20 weeks gestation, so early pregnancy loss data is challenging to capture. EPAC began seeing clients in April 2022 to care for and evaluate early pregnancy losses to reduce emergency room visits for concerns regarding vaginal bleeding and cramping. From April 2022 to February 2023, EPAC saw 251 patients. Of those 251 patients, 123 were confirmed miscarriages. Most patients seen fell into the 6–7-week gestational age range. Another component of the first objective was to research and identify current support groups and resources available to those experiencing pregnancy loss. Two resources were identified in Utah. Share Parents of Utah, a nonprofit organization, offers multiple support group options in person and online throughout the state. These are generally ongoing, open groups. Chapters and Seasons, a therapist's private practice in Draper, Utah, offers an educational group twice a year titled "Healing Your Broken Heart after the Death of a Baby." The group meets virtually once weekly for six weeks; space is limited. 13 The cost is $240 per individual or couple, with a limited number of half-tuition scholarships from donations. This educational group is the only other resource found that is a time-limited, closed group aside from the manualized Caring Connections Perinatal Bereavement Program. There are a variety of National organizations that offer online support groups. Star Legacy Foundation offers a national telephone support line and peer support sessions. They also have online support groups for both perinatal loss and pregnancy after loss, as well as a dad's discussion group and a grandparent's support group. Postpartum Support International offers a variety of online support groups, including Early Pregnancy Loss Support for Moms, Pregnancy After Loss Support, Termination for Medical Reasons, and more. Children's Bereavement Center offers weekly free virtual peer grief support groups for perinatal loss. All online support groups are open, with no limit to the number of participants or the length of participation. However, these offerings are not structured and may not address the exact educational needs of the manualized program. The second objective was to conduct research and gather data to develop content for the perinatal bereavement manual. The original manual structure developed by Caring Connections remained, as some aspects of grief work are universal across all types of losses. Collaboration with content experts occurred to develop content specific to perinatal loss that was both sensitive to the nature of the loss and informative about the expectations and what research is known about grief. The third objective was manual development. The 125-page Perinatal Bereavement Support Group manual focused on understanding grief, how grief affects thoughts and feelings, being present, and coping with grief, relationships, and communication. Each week focused on a specific theme related to grief. Week One: What is Grief? Discusses natural aspects of grief, typical responses to grief, and expectations of oneself while grieving, precisely defining perinatal loss, mental and physical recovery after birth, complicated grief, and how women and men may grieve differently. Week Two: Your Own Grief Journey. This chapter discusses grief as a process and how individuals experience grief. Week Three: How Grief Affects Thoughts and Feelings. This chapter introduces different emotions of grief, such as anger and guilt, and offers suggestions on how to process them concerning perinatal loss. 14 Suggestions for ways to deal with distressing feelings are also presented here. Week Four: Coping as You Grieve. This chapter discusses the value of taking breaks from grief, coping skills, and stress. Week Five: Being Present with Your Grief. Relaxation techniques such as affirmations, deep breathing, selfcompassion, and meditation are introduced here as methods to experience grief in healthy ways. Week Six: Relationships. This chapter focuses on caring for oneself during grief and making relationships with others work during the grief experience. Week Seven: Communication. The discussion involves sharing grief with others and ways to remember and share memories of your baby. Week Eight: Finding Your Way. The support group wraps up here with a discussion about understanding and accepting this new life and knowing if additional support is needed. Additional content in the manual's Appendix includes helping children understand death, pregnancy after loss, tips for a good night's sleep, and helping others in grief. The manual also provides resources such as online support content and recommended grief and child loss books. The fourth objective was to present this completed manualized program to Caring Connections for consideration to adopt the Perinatal Bereavement Support Manual into their program. The Perinatal Bereavement Support Program has been approved for inclusion into Caring Connections. Discussion Summary Developing a 125-page Perinatal Bereavement Support Group manual involved specialized care and attention to creating material tailored to pregnancy and infant loss. This type of grief and suffering is unique in that, for most parents, the ability to create memories with their child and then reminisce does not exist. Often, the reflection of a person's life and positive memories help guide someone along their grief journey. This presents a distinctive challenge in guiding parents through grief and coping with loss. The strength of connection that emerges from a supportive environment centered around a common emotion is compelling. Grief is dynamic, but it becomes easier knowing we are not alone. The Human-to-Human Relationship Model is based on creating a genuine relationship established through 15 interaction. Some of the basic concepts of this model include suffering, meaning, communication, and hope, which are all necessary components of grief and healing. Interpersonal relationships that emerge due to invariable loss are powerful. This manualized group guides facilitators to help bereaved parents through such losses—the manual guides through grief in a supportive, respectful, and sensitive manner. Notable strengths of this program include the recognition of early pregnancy loss and support for pregnancy after loss. In addition, the structured, manualized approach serves as a detailed roadmap for an 8-week closed support group where participants can build relationships with others who have experienced and are grieving similar losses. Finally, the program provides local Utah resources for support and education regarding perinatal loss. Continued grief support following the 8-week session includes distributing monthly Caring Connections newsletters and invitations to free annual events for Caring Connections participants. In addition, the opportunity to join other support groups within the organization is always available. Interpretation The project objectives were met and fully support the importance of implementing a perinatal bereavement support group. The Perinatal Bereavement Support Program, to be offered through the University of Utah Caring Connections program, will reach its target population. It is important to note that anyone in Utah can participate due to the nature of online support groups. This helps meet those patients in rural communities by addressing social disparities in health. There are costs associated with rolling out the Perinatal Bereavement Support Group via Caring Connections. Production of the manual and printed materials is estimated to cost about $1650.00 for 110 manuals. Before offering this support group, Caring Connections would print 100 participant manuals and ten facilitator manuals, costing about $15 per manual at the University Print & Mail Center. Caring Connections staff pay the facilitators an honorarium to run groups, which would be $250 per 8-week support group. University employees get paid about $350 per group due to a tax and benefit rate. Compensation for Caring Connections staff to screen participants for appropriateness of inclusion to groups is variable. 16 Participants are charged a one-time fee of $50 to attend the 8-week support group. Fees are waived if they pose a hardship to the participant via scholarships due to generous support from the Larkin Mortuary. Estimated yearly fees that are waived are somewhere between 25-50%. Also, CARES Act funds and funding from the State of Utah have supported the continuation of virtual COVID-grief groups and COVID-recovery support groups. In addition, support from community members and grant money significantly contribute to Caring Connections' ongoing funding. No one needing grief support is ever turned away, regardless of their ability to pay attendance fees. A HIPPA-compliant Zoom license for providing all virtual groups costs about $3600 per year for 40 licenses. If groups are held in person, they are located on campus, usually free of rental fees. Regarding a strategic trade-off, the project objectives support the need for this specialized bereavement group. Time spent identifying current resources and evaluating the level of need for these services was time intensive but rewarding. Limitations The most significant limitation of this project was numerous unsuccessful attempts to obtain fetal loss data for the University of Utah hospital. The initial objective was to meet with a pathologist at the hospital to request this information. Initial contact was made via phone call to the laboratory manager with the intent to be connected to the pathologist. This led to redirection to the Office of Decedent Affairs, as this department collects and reports fetal death data to the state of Utah. Multiple phone calls were made, and emails were sent over several months. However, data was promised but never given due to what was described as short staffing and an inability to look up and report that data. This specific data would have been ideal for supporting the need for a University of Utah Caring Connections Perinatal Bereavement program for losses close to home. However, the group is open to participants all over Utah. Another potential limitation is time constraints, which did not allow for the implementation and subsequent evaluation of this specialized support group as part of this project. However, after the manual production, Caring Connections intends to offer this support group this summer. The Perinatal 17 Bereavement Support Group will become one of the several other specialized support groups professionally conducted through the University of Utah Caring Connections program. Conclusions The development of a structured Perinatal Bereavement Support Group for the Caring Connections program will serve as an invaluable resource to those in Utah experiencing perinatal loss. Fetal loss data in Utah support the need for this program. Unfortunately, current resources to support this specialized type of loss are limited, especially for connection among Utah parents. The Perinatal Bereavement Support Group, following adoption into the Caring Connections program, will be made available along with the other specialized support groups throughout the year, either in person or virtually. Caring Connections will be responsible for carrying it forward and will monitor sustainability by assessing participants' demand for this specialized group and the availability of knowledgeable facilitators. In addition, pre and post-group surveys can be analyzed for effectiveness from group attendance by the participants. There is significant potential for this project to be expanded to other contexts through the development of additional specialized support groups within Caring Connections categorized by types of loss. Although grief is experienced differently from person to person, establishing a connection on the premise of similar loss can be a powerful tool for healing. The Perinatal Bereavement Support Group, following manual editing revisions and printing, will be available to participants as early as this summer or fall. The following steps include advertisement and participant surveys for those interested in this group and follow-up screenings to evaluate the effectiveness of the group after the 8-week sessions have been completed. In addition, overall demand for the group will help guide the frequency of services offered. 18 Acknowledgments I want to thank Dr. Kathie Supiano, Ph.D., LCSW, FT, for her encouragement to develop grief support content for this special population. Perinatal loss is a challenging experience that deserves acknowledgment, thoughtful consideration, and empathetic support. I am grateful that Dr. Supiano allowed me to create a meaningful quality improvement project that will serve bereaved mothers and their partners following the painful loss of their children. A special thanks to Camille Hawkins, LCSW of Chapters & Seasons, for her contributions to this manual and her assistance with editing. She has touched my heart with the story of her loss and her commitment to help guide and support others through pregnancy loss. Collaborating with her to serve others during loss via healing retreats and groups has been inspirational and heartwarming. I am grateful our paths crossed, and look forward to future collaborations. Melanie Green and Jaymie Olsen Maines of Share Parents Utah have been essential components in developing my passion for supporting and advocating for those experiencing perinatal loss. I first met these women nearly ten years ago and was inspired by their commitment to serve others in the face of loss after both experiencing heartbreaking losses of their own. They helped me raise awareness of Share Parents' services and dedication to bereaved parents for the St. Marks Labor and Delivery unit so that more patients could benefit from their services and to show what a genuinely invaluable resource they were to us as nurses. I have remained friends with these incredible women over the years, and they were the first ones to come to mind when considering content experts for this project. I will be forever grateful to them for their support and dedication to serving this special population. Thank you to my project chair, Dr. Deborah Morgan, DNP, PMHNP-BC, professor at the University of Utah. Your continued encouragement and support throughout this program and commitment to my success have been admirable. I appreciate your feedback, patience, and expertise to ensure I completed this challenging and rewarding project. 19 References Berry, S. N. (2022). The Trauma of Perinatal Loss: A Scoping Review. Trauma Care, 2(3), 392–407. https://doi.org/10.3390/traumacare2030032 Burden, C., Bradley, S., Storey, C., Ellis, A., Heazell, A. E., Downe, S., Cacciatore, J., & Siassakos, D. (2016). From grief, guilt pain, and stigma to hope and pride - a systematic review and meta-analysis of mixed-method research of the psychosocial impact of stillbirth. BMC Pregnancy and Childbirth, 16, 9. https://doi.org/10.1186/s12884-016-0800-8 Centers for Disease Control and Prevention. (2019). Stats of the states - infant mortality. Cdc.gov. https://www.cdc.gov/nchs/pressroom/sosmap/infant_mortality_rates/infant_mortality.htm Domogalla, J. S., McCord, J., & Morse, R. (2022). Rural Perinatal Loss: A Needs Assessment. Omega: Journal of Death & Dying, 84(4), 1045–1060. https://doiorg.ezproxy.lib.utah.edu/10.1177/0030222820926296 Dugas, C., & Slane, V. H. (2019, May 11). Miscarriage. Nih.gov; StatPearls Publishing. https://www.ncbi.nlm.nih.gov/books/NBK532992/ Fenstermacher, K., & Hupcey, J. E. (2013). Perinatal bereavement: a principle-based concept analysis. Journal of advanced nursing, 69(11), 2389–2400. https://doi.org/10.1111/jan.12119 Fernández-Férez, A., Ventura-Miranda, M. I., Camacho-Ávila, M., Fernández-Caballero, A., GraneroMolina, J., Fernández-Medina, I. M., & Requena-Mullor, M. (2021). Nursing Interventions to Facilitate the Grieving Process after Perinatal Death: A Systematic Review. International journal of environmental research and public health, 18(11), 5587. https://doi.org/10.3390/ijerph18115587 Fernández-Sola, C., Camacho-Ávila, M., Hernández-Padilla, J. M., Fernández-Medina, I. M., JiménezLópez, F. R., Hernández-Sánchez, E., Conesa-Ferrer, M. B., & Granero-Molina, J. (2020). Impact of Perinatal Death on the Social and Family Context of the Parents. International Journal of environmental research and public health, 17(10), 3421. https://doi.org/10.3390/ijerph17103421 20 Gregory, E., Valenzuela, C., & Hoyert, D. (2022). National Vital Statistics Reports Fetal Mortality: United States, 2020. 71. https://www.cdc.gov/nchs/data/nvsr/nvsr71/nvsr71-04.pdf Travelbee's human-to-human relationship model. Nursing Theory. (n.d.). Retrieved July 3, 2022, from https://nursing-theory.org/theories-and-models/travelbee-human-to-human-model-of-nursing.php 21 Appendix A Office of Vital Records& Statistics February2023 OVRS NEWS OF BIRTH REGISTRATION Reach out with any questions or suggestions: Web: vitalrecords.utah.gov Phone: [phone] Email: [e-mail] Breaking News Important Reminders Rose (Registration of Stillbirth Events) Has a new feature. For details check out page 3. The State Office of Vital Records is available by phone or email only from 8:00am 5:00pm Mountain time. Fetal Deaths as of 12/31/2022 =241 AST FACTS: FAST FACTS: As of December 31, 2022, Utah welcomed 47,060 new babies. C O N T Welcome 2023, Contact Info & F.A.Q……...2 • E Ho • Hospitals • Home Births • Birthing Centers • Other N 45,001 1,381 670 6 T S Breaking News & Important Reminders.........5 Timeliness Reports: Hospitals.................3 Need to Know………………..................... .......6 Timeliness Reports: Birthing Centers…....3 Congenital Anomalies............................... 7-8 Paternity Report Card............................ .4 OVRS Contact Lists............... .............. ......9 1|Page 22 Appendix B- EPAC REPORT University of Utah Early Pregnancy Assessment Clinic Established April 2022 Care aims to provide exceptional care for pregnant patients in the first trimester up until 13w6d gestation with reports of vaginal bleeding and cramping. The goal is to decrease referrals to ED Majority of gestational age seen: 6-7 weeks EPAC began to see patients on 4/5/2022 Monday afternoons, Tuesday afternoons, Wednesday mornings, and Friday mornings. EPAC visits are scheduled the same day by nursing staff after they are triaged. Summary totals from April 2022 through February 2023 Total EPAC visits: 251 Confirmed Miscarriages D&C procedure visit:39 Medication management visit:12 Confirmed miscarriage visits or ED follow-up: 64 Miscarriage follow up:5 Ectopic diagnosis:3 Pregnancy of unknown location: 19 Continuing Pregnancies: 109 23 Appendix C- EPAC Flyer 24 Appendix D- Perinatal Bereavement Manual * See separate attachment for 125-page manual.