A qualitative analysis of parents' experiences while their neonates with congenital heart disease require intensive care.

Objective: To better understand the experience of parents with neonates with congenital heart diseases (CHD) admitted to a neonatal intensive care unit (NICU) in order to identify challenges faced by parents and discover support strategies helpful in positive coping.

Study Design: Prospective cohort study of parents of neonates with CHD. Parents completed a questionnaire with open ended questions regarding their experience and feeling during the hospitalization within one week of the child discharge from the NICU.

A quality improvement project to improve treatment of severe hypertriglyceridemia in veterans.

Background: Severe hypertriglyceridemia (sHTG) is associated with an increased risk of acute pancreatitis. Prompt recognition and treatment of sHTG is key for prevention of acute pancreatitis and its associated life-threatening complications.

Local Problem: Patients with sHTG at a primary care clinic within the Veterans Affairs Eastern Colorado Health Care System were receiving suboptimal treatment that did not align with evidence-based guidelines.

Development and Validation of a Scale to Measure Person-Centered Care in Fetal Care Centers.

Introduction: Fetal care centers (FCCs) in the USA lack a standardized instrument to measure person-centered care. This study aimed to develop and validate the Person-Centered Care in Fetal Care Centers (PCC-FCC) Scale.

Methods: Initial items were developed based on literature and input from clinicians and former patients.

Evaluation of learning transfer after a perinatal/neonatal palliative care virtual training course.

Background: The success of a training can be determined by the degree of learning transfer. To address a gap in educational offerings during the pandemic, an interdisciplinary team developed and offered a 3-day virtual course, called Next Level Perinatal Palliative Care Training.

Objective: This study aimed to evaluate the transfer of learning and practice from a virtual training course on perinatal/neonatal palliative care (PNPC) by a range of clinicians.

Implementation of Quality Indicators of Perinatal/Neonatal Palliative Care One-Year Following Formal Training.

The aim of this study was to measure implementation of quality indicators (QIs) of Perinatal/Neonatal Palliative Care (PNPC) as reported by participants following a one-year training course. A cross-sectional survey mixed-method design was used to obtain data from an interdisciplinary team of professionals one year after attending a PNPC training course. A questionnaire with 32 QIs queried participants about self-reported implementation of PNPC and that of their colleagues.

The Neonatal Comfort Care Program: Origin and Growth Over 10 Years.

The objective of perinatal palliative care is to provide holistic and comprehensive health care services to women who are anticipating the birth of a neonate diagnosed prenatally with a life-limiting condition and to continue supportive interventions for the mother and neonate after the birth. The nature of pregnancy, with two patients requiring medical care, requires clinicians from different specialties to engage with one another, the patient, and her chosen family members. Following birth, additional skill sets to treat the medical and comfort needs of the neonate, as well as the psychoemotional and medical needs of the mother, are required.

Assessment of Healthcare Professionals' Self-Perceived Competence in Perinatal/Neonatal Palliative Care After a 3-Day Training Course.

Perinatal/neonatal palliative care (PNPC) offers a plan of care for improving the quality of life of infants when the prolongation of life is no longer the goal of care. The number of PNPC programs has increased in recent years, but training for clinicians has not kept pace. Therefore, an interdisciplinary team developed a 3-day intensive PNPC training course for physicians, nurses, and other healthcare professionals at Columbia University Irving Medical Center (CUIMC).

Perinatal bereavement and palliative care offered throughout the healthcare system.

The aims of this article are twofold: (I) provide a general overview of perinatal bereavement services throughout the healthcare system and (II) identify future opportunities to improve bereavement services, including providing resources for the creation of standardized care guidelines, policies and educational opportunities across the healthcare system. Commentary is provided related to maternal child services, the neonatal intensive care unit (NICU), prenatal clinics, operating room (OR) and perioperative services, emergency department (ED), ethics, chaplaincy and palliative care services. An integrated system of care increases quality and safety and contributes to patient satisfaction.

"I Would Do It All Over Again": Cherishing Time and the Absence of Regret in Continuing a Pregnancy after a Life-Limiting Diagnosis.

Parents, after learning of a life-limiting fetal condition (LLFC), experience emotional distress and must consider options that impact the remainder of the pregnancy, their future lives, and family members. For those who continue, little is known about their long-term presence or absence of regret about their choice, the reasons for this feeling, or its impact on their life. The aim of this research was to examine the concept of decision regret in parents who opted to continue a pregnancy affected by an LLFC.

Quality predictors of parental satisfaction after birth of infants with life-limiting conditions.

Aim: This study examines parental satisfaction with care received in the context of a life-limiting foetal diagnosis and subsequent birth.

Methods: Survey methods were utilised to embed the Quality Indicators (QI) and Parental Satisfaction of Perinatal Palliative Care Instrument in a survey: 'The Voice of Parents'.

Results: The web-based survey had a final sample of N = 405 parent responders.

Ethical Considerations in Perinatal Palliative Care.

Clinicians may face new ethical considerations when parents continue pregnancies after receiving life-limiting fetal diagnoses and desire palliative care. In this article we present four ethical considerations in perinatal palliative care: ambiguous terminology in relation to diagnosis or prognosis, differences between bereavement support and palliative care, neonatal organ donation, and postdeath cooling. In this article, we enable readers to consider current topics from different perspectives and reflect on care when confronted with sensitive clinical scenarios.

Quality Indicators and Parental Satisfaction With Perinatal Palliative Care in the Intrapartum Setting After Diagnosis of a Life-Limiting Fetal Condition.

Measurement of quality indicators (QIs) in perinatal palliative care has not been addressed. Parents who chose to continue pregnancy after a diagnosis of a life-limiting fetal condition described perceptions of quality care and their satisfaction with care. This research identified which QIs explained parental satisfaction.

A Survey of Perinatal Palliative Care Programs in the United States: Structure, Processes, and Outcomes.

Background: Perinatal palliative care (PPC) programs are proliferating nationwide, but little is known about their structure, process, or desired outcomes, to inform future program development.

Objective: To explicate structure, processes, and outcomes of PPC programs, specifically how they coordinate care and manage goals of care meetings, as well as providers' perceptions of the most beneficial components of care and their expected care outcomes.

Design: Free-text response data were taken from a 48-item online survey organized around the eight domains defined by the National Consensus Project for Quality Palliative Care (NCP).

Parent reported outcomes of quality care and satisfaction in the context of a life-limiting fetal diagnosis.

Objective: To identify which quality indicators (QI) predict patient satisfaction.

Methods: A cross-sectional design using a validated tool was administered using a Web-based platform. Parents (n = 405) who experienced a life-limiting fetal diagnosis and opted to continue their pregnancy provided feedback on 37 QI and satisfaction with prenatal care.

Work environment facilitators to the availability of complementary and alternative therapies in perinatal hospices.

Increasingly, patients and clinicians are considering palliative care interventions during pregnancy for the maternal-fetal dyad, when a life-limiting diagnosis is confirmed. Nurses are at the forefront of providing hospice and palliative care that includes planning interventions for infants nearing the end of life. However, little is known about the work environment facilitators to the availability of complementary and alternative medicine (CAM) therapies.

Provision of Services in Perinatal Palliative Care: A Multicenter Survey in the United States.

Background: Congenital anomalies account for 20% of neonatal and infant deaths in the United States. Perinatal palliative care is a recent addition to palliative care and is meant to meet the needs of families who choose to continue a pregnancy affected by a life-limiting diagnosis.

Objective: To examine characteristics of programs and services provided, assess alignment with the National Consensus Project domains of care, and identify providers and disciplines involved in programs.

The relationship between the nursing environment and delivering culturally sensitive perinatal hospice care.

Background: Wide variations exist among perinatal hospices, and barriers to perinatal palliative care exist at the healthcare level. Research in the area of culturally sensitive perinatal palliative care has been scarce, a gap which this study addresses.

Objective: To evaluate the relationship between the nurse work environment and the delivery of culturally sensitive perinatal hospice care.

Instrument Psychometrics: Parental Satisfaction and Quality Indicators of Perinatal Palliative Care.

Background: Despite a life-limiting fetal diagnosis, prenatal attachment often occurs in varying degrees resulting in role identification by an individual as a parent. Parents recognize quality care and report their satisfaction when interfacing with health care providers.

Objective: The aim was to test an instrument measuring parental satisfaction and quality indicators with parents electing to continue a pregnancy after learning of a life-limiting fetal diagnosis.

The Meaning of Food and Multicultural Implications for Perinatal Palliative Care.

Feeding an infant is a bonding experience for parents, particularly for women from cultures in which breastfeeding is the norm. When an infant is unexpectedly ill, or his or her life is expected to be brief, challenges surrounding infant feeding can occur. Regardless of ethnicity or culture, parents facing the death of their infant have difficult decisions to make and need time to process those decisions.

Clinician perspectives of barriers in perinatal palliative care.

Purpose: Perinatal palliative care (PPC) is a developing model of care aimed at providing supportive services to families anticipating fetal or neonatal demise. This study measured barriers physicians and advance practice nurses report in providing and referring patients to PPC.

Study Design And Methods: A cross-sectional survey design using the Perinatal Palliative Care Perceptions and Barriers Scale © was administered using a Web-based tool.

Exploring the perceptions and the role of genetic counselors in the emerging field of perinatal palliative care.

Perinatal palliative care is a collaborative model of providing care to fetuses diagnosed with life-limiting conditions along with supportive care to parents. The study explored perceptions and current practice trends of genetic counselors related to this care. An ethics framework was used to structure the study.

State of the science on perinatal palliative care.

Objective: To report the state of the science since 1995 on the concept of palliative care for parents who opt to continue a pregnancy after receiving a life-limiting fetal diagnosis.

Data Sources: PubMed, Ovid, PsycInfo, CINAHL, and Medline were searched from 1995 to July 2012 using the terms perinatal palliative care and perinatal hospice.

Study Selection: Inclusion criteria included empirical studies written in English that focused on experiences of parents who opted to continue a pregnancy in which the fetus had a life-limiting condition or on perinatal palliative care.

Clinician confidence and comfort in providing perinatal palliative care.

Objective: To analyze and report the differences in perceptions of physicians and advance practice nurses, their comfort in providing and referring neonatal patients to perinatal palliative care (PPC), and their confidence in delivering such care.

Design: A cross-sectional survey design using the Perinatal Palliative Care Perceptions and Barriers Scale.

Setting: A survey was administered using Qualtrics, a Web-based tool.