Health Care Professionals' Awareness of a Child's Impending Death.

Health care professionals' (HCPs) experiences during early pediatric end-of-life care were explored using a theory-building case study approach. Multiple data collection methods including observation, electronic medical record review, and semi-structured interviews were collected with 15 interdisciplinary HCPs across four cases. Within- and across-case analyses resulted in an emerging theory. HCPs' initial awareness of a child's impending death is fluid, ongoing, and informed through both relational and internal dimensions. Initial cognitive awareness is followed by a deeper focus on the child through time-oriented attention to the past, present, and future. HCPs engage in a "delicate dance of figuring out" key issues. Awareness was exemplified through four themes: professional responsibility, staying connected, grounded uncertainty, and holding in. The emerging theoretical model provides a framework for HCPs to assess their ongoing awareness, identify personal assumptions, and inform gaps in understanding when facilitating early end-of-life care discussions with families.

Making a case: creating a perinatal palliative care service using a perinatal bereavement program model.

This article explores the innovative approach of creating a perinatal palliative care service in an institution that already has a perinatal bereavement program. The proposed model focuses on the importance of establishing and maintaining relationship among and between nurses, other clinicians, and parents. The authors examine theoretical and clinical perspectives, recognizing the presence of both grief and hope from the moment of a life-threatening fetal diagnosis. The article identifies key program development processes, potential barriers, and practical implementation strategies as methods to ensure the delivery of seamless perinatal palliative care from diagnosis, through pregnancy, delivery, and the baby's living and dying.

Prioritization of Pediatric Palliative Care Field-Advancement Activities in the United States: Results of a National Survey.

BACKGROUND: The field of pediatric palliative care (PPC) continues to encounter challenges and opportunities to improving access to high-quality PPC services. In early 2019, a workshop identified 11 potential "next step" actions, and subsequently a national survey-based poll of members of the PPC community was conducted to prioritize these potential actions in terms of their "actionable importance." METHODS: Invitations to the survey were distributed in October 2019 to interdisciplinary PPC health care professionals via email to two major listservs, one hosted by the Section of Hospice and Palliative Medicine of the American Academy of Pediatrics, the other by the Center to Advance Palliative Care. Respondents rated the "actionable importance" of items relative to each other via a discrete choice experiment. Median importance scores are reported for each item. RESULTS: One hundred seventy-seven individuals responded to the survey. The majority (62.2%) were physicians, with nurses (16.4%), advanced practice nurses (7.9%), and social workers (7.3%) being the other most common responders. The top five potential actions, in descending rank order, were: Determine what parents value regarding PPC (median score of 17.8, out of a total score of all items of 100); Define and disseminate core primary PPC curriculum (median, 15.3); Develop PPC national representation strategy and tactics (median, 12.3); Create PPC-specific program development toolkit (median, 10.9); and, Analyze payment and financing ratios (median, 9.6). CONCLUSIONS: Those seeking to advance the field of PPC should take into account the findings from this study, which suggest that certain actions are more likely to have a beneficial impact on moving the field forward.

Narrative Inquiry Into Nursing Care of Pregnant Women and Families in Specialized Fetal Diagnosis and Treatment Settings.

OBJECTIVE: To examine how nurses describe caring for women and families in specialized fetal diagnosis and treatment settings. DESIGN: We used narrative inquiry. SETTING: A secure online survey platform. PARTICIPANTS: We recruited 26 nurses from the Fetal Therapy Nurse Network as a subsample from a prior Delphi study on the essential structures, processes, outcomes, and challenges of nursing practice in the emerging field of fetal diagnosis and treatment. METHODS: We used narrative inquiry and Clandinin's three-dimensional space narrative analysis to interpret the stories provided by participants to illustrate their practice and the relationship between their practice and care quality and health outcomes. RESULTS: Participants described three primary types of fetal diagnoses and management scenarios: prenatal intervention (maternal-fetal surgery to treat a fetal anomaly), postnatal intervention (neonatal surgery), and perinatal palliative care (continuation of a pregnancy after a life-limiting fetal diagnosis). We identified three overarching themes related to nursing processes: A Sounding Board: Counseling the Pregnant Woman and Family, A Care Coordinator: Orchestrating a Complex Journey, and A Constant Presence: Being With the Pregnant Woman and Family. We also identified specific outcomes related to nursing care. CONCLUSION: We used narrative inquiry to expand on prior research and advance the conceptualization of a model of nursing practice in fetal diagnosis and treatment settings. Our results provide a basis to begin to test theories that connect nursing practice to care quality and outcomes in clinical practice settings. To comprehensively evaluate and enhance care as it evolves and expands, the immediate and long-term effects of nursing practice must be identified.

Modified Delphi Study on Nursing Practice and Science in Fetal Care.

OBJECTIVE: To identify essential structures, processes, outcomes, and challenges of nursing practice in fetal care and to identify research priorities for nurses in fetal care. DESIGN: We used a modified Delphi method to achieve consensus. SETTING: A secure online survey platform. PARTICIPANTS: The expert panel included nurses from the Fetal Therapy Nurse Network. In addition, a multidisciplinary research jury included members of the North American Fetal Therapy Network (NAFTNet). METHODS: We collected data in three consecutive rounds with online questionnaires that were e-mailed to panelists. We used content analysis to generate statements from an initial round of open-ended questions. Statements met consensus if 75% of the panelists ranked it as greater than or equal to 6 on a 1-to-7 Likert scale. RESULTS: The 48 nurse panelists and 11 multidisciplinary jury members described a range of nursing processes. Consensus was reached on 96 statements related to the structure, processes, outcomes, and research priorities of nurses in fetal care. CONCLUSION: The participants agreed that an expert fetal care nursing team is necessary to provide care to women and families during fetal diagnosis and treatment. Ideally, these nurses should coordinate care and provide direct clinical care (e.g., patient counseling) in outpatient prenatal settings and inpatient settings when fetal surgery is involved. Nurses should be supported to take on leadership roles in program development, research, quality improvement, and professional development with relevant professional organizations.

Meaningful moments.

Rituals provide meaning and order to transitions, and symbolically connect people and events. Despite the prevalence of perinatal loss (miscarriage, stillbirth, and newborn death) and pediatric deaths, little has been written about the use of rituals surrounding these losses. The purpose of this article is to define the dimensions of a ritual as each pertains to perinatal and pediatric death, and provide concrete applications for use in clinical practice. Intention, participation, and meaning-making are the key dimensions of rituals that arise from clinical encounters. Initiating the discussion about ritual and the timing of the ritual itself are critical elements for the nurse who is caring for a bereaved family. Because of the paucity of research on using rituals in perinatal and pediatric death, nurse researchers should design studies that explore the outcomes of using rituals, both in the short- and long-term, following the death.

Leaning in and holding on: team support with unexpected death.

Integral to the care of medically fragile infants and children is the sobering reality that not all will survive. Supporting children and families through the dying process requires knowledge, skill, compassion, and a willingness to be present to the suffering of others. As healthcare professionals journey with a dying child, they experience an ongoing dual nature of their own grief, shifting between focusing on the loss at hand or avoiding the loss and refocusing their attention elsewhere. This internal conflict may be potentiated with the sudden, unexpected death of a patient, which affords little time for caregivers to process their own experience of the loss. When an unanticipated death occurs, a palpable grief ripples through the entire unit, impacting caregivers, the bereaved parents, and other patients and families. Such an event holds the potential for either team disorganization or growth. This article presents a case study of one unit's response to the unexpected death of a long-term patient, which caused caregivers to lean in to support each other. Using a case study approach, the author identifies strategies to best guide teams when death arrives without warning, and provides ideas for cocreating ritual to honor relationship in the midst of tragedy.

Combining regional expertise to form a bereavement support alliance.

Providing compassionate bereavement care for families experiencing perinatal loss is a standard of care in most healthcare organizations. In this article, we describe the development of The Alliance of Perinatal Bereavement Support Facilitators, begun over 25 years ago in Chicago by staff who identified the need to reach out to colleagues at other area institutions for advice and support in this work. This collaboration created a regional support network that has resulted in a long-lasting, active, sustainable organization of excellence focused on enhancing practice, education, and perinatal bereavement care. Alliance activities center around four main areas: education, networking/support, policy, and recognizing outstanding service to families. By continuing to draw upon the collective talent, wisdom, and expertise of its members, The Alliance still serves grieving families and provides mentoring for future interdisciplinary team members engaged in this work. The path taken to build this organization can be used by professionals in other specialties who are looking to create their own alliance infrastructure based on mutual benefit and interest.

The tie that binds: relationships in perinatal bereavement.

Relationship is a central concept to the delivery of quality perinatal bereavement care. This article explores relevant bereavement research and clinically based writings about relationship in the care of families experiencing perinatal loss. Focusing on relationship provides a framework to guide interventions that will be perceived as meaningful and helpful to grieving parents. From the moment parents learn the difficult news of their baby's poor prognosis or death, nurses must strive to establish trust while building an effective working relationship with the family. A nurse with an understanding of the relationship needs can guide parents in creating a context for supporting each family member dealing with this unexpected family tragedy. Through sensitive follow-up bereavement care, nurses provide a source of hope for grieving families over time. Ultimately, nurses must find meaningful ways of self-care as a way of reinvesting in future relationship with other grieving families.

Respectful disposition in early pregnancy loss.

This article discusses an issue rarely seen in the professional literature: the tangible ways nurses can respect a woman's needs following miscarriage by ensuring the safe handling and disposition of fetal tissue or remains. Concepts of personhood, place, and protection are important for nurses to understand within the context of a woman's response to miscarriage. Hospitals or clinics that foster a culture of respectful fetal disposition should have a system in place to bury tissue or fetal remains in a designated area; in fact, several states have enacted laws that regulate what hospitals and clinics must do, or what women must be offered, after a miscarriage or ectopic pregnancy. Barriers may exist to creating a culture of respectful disposition, including staff attitudes, perceived time and financial constraints, lack of knowledge, and inefficient communication between departments. Nurses can begin implementing change in this regard through conducting a needs assessment using guiding questions contained in this article. In addition, through communication, education, and implementation of respectful disposition, nurses can promote safe processes that will honor women's preferences and wishes for care following a miscarriage.