Charlotte Wool

Systematic review of the literature: parental outcomes after diagnosis of fetal anomaly.

Advancing technology has made detecting fetal abnormalities in the first and second trimesters a reality. Few families are prepared for the difficult decisions that must be made if their unborn children are diagnosed with a life-limiting condition. Expectant parents are compelled to make decisions on the basis of limited options. A systematic review of the literature is presented with an aim to inform clinicians of parental experiences and outcomes after diagnosis of a fetal anomaly. The review focused on patients given a diagnosis for fetal anomalies for the 40-year period from 1970 to 2010 by using the key words such as fetal anomaly, congenital malformations, pregnancy termination, perinatal palliative care, and perinatal hospice. Regardless of the option taken, women often experienced intense grief reactions. Both giving birth to a child with a life-limiting condition and termination of pregnancy for fetal anomaly can be emotionally traumatic life events, both associated with psychological morbidity. Nonaggressive obstetric management, allowing natural birth without life-sustaining therapeutics, is an option for families. Couples presented with a coordinated perinatal palliative care model may opt to continue their pregnancy. Families who experienced perinatal hospice/palliative care report positive feedback, but more research is needed to explore the psychological outcomes of this choice.

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. Twenty studies met inclusion criteria. DATA EXTRACTION Results from empirical studies contributing to the knowledge base of perinatal palliative care are presented. DATA SYNTHESIS Women are confronted with powerful emotions, challenging decisions, and considerable uncertainty following the news of a life-limiting fetal anomaly. Women choose to continue their pregnancies for a variety of reasons and when doing so embark on a search for meaning. The science suggests that perinatal palliative care is welcomed by parents and is a medically safe and viable option. Women voiced positive feedback about their decisions to continue their pregnancies, and parents cited personal growth in the aftermath. Perinatal palliative care programs provide services that incorporate early and integrative care beginning in the antenatal period. A multidisciplinary coordinated approach provides parents with comprehensive, holistic support. CONCLUSION More research is needed to elucidate the factors that will benefit parents who continue their pregnancies. Investigating the needs and perceptions of clinicians and their willingness to participate in this new model of care is necessary as is examining barriers that may undermine care. Nurses can lead research on these topics and implement evidence-based practice grounded on study findings.

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. Recruitment was completed via e-mail invitation and list servs. PARTICIPANTS Physicians (n = 66), advance practice nurses (n = 146), and other clinicians (n = 90). METHODS t test and Mann-Whitney U were used to examine differences in clinician perspectives, comfort, and confidence in delivering PPC. Hierarchical multiple regression was used to test the hypothesis that clinician perceptions, barriers to PPC, years in clinician practice, referral comfort, and personal comfort and case history explain variation in confidence. RESULTS Physicians and nurses have fundamentally similar perspectives but report significant differences in their comfort with providing and referring patients to PPC and their confidence in delivering such care. There was a significant regression equation with an overall R(2) of .56 explained variation in confidence. CONCLUSION Palliative care involves physicians and nurses making unique and positively synergistic contributions to the care of families expecting an infant with a life-limiting diagnosis. Clinicians share ethical perspectives regarding PPC and are positioned to collaboratively develop PPC programs. Barriers to PPC delivery exist and clinicians can benefit from interventions aimed at modifying practice environments. Supportive interventions and educational initiatives may increase clinician comfort and confidence with palliative care delivery.

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. DESIGN A cross-sectional survey design included 48 items addressing funding and domains of quality care. SUBJECTS Program representatives from 30 states (n = 75). PRINCIPAL RESULTS Perinatal palliative care programs are housed in academic medical centers, regional or community hospitals, local hospices, or community-based organizations. Significant differences by program setting were observed for type of fetal diagnoses seen, formal training in communicating bad news to parents, mechanisms to ensure continuity of care, and reimbursement mechanisms. One hundred percent of programs provided attention to spiritual needs and bereavement services; 70% of programs are less than 10 years old. Follow-up with parents to assess whether goals were met occurs at 43% of the perinatal palliative care programs. Formal measures of quality assessment were articulated in 38% of programs. CONCLUSION This study dramatically adds to the literature available on perinatal palliative care program settings, types, and domains of care. It is clear that there are a variety of types of programs and that the field is still developing. More work is needed to determine which quality measures are needed to address perinatal care needs in this population.

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

Abstract 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. Descriptive analyses and logistic regression identified relationships among variables. Results: Parental satisfaction with care was 75.6%. Statistically significant differences in mean scores were reported with satisfied patients reporting higher agreement with quality indicators. Parents who were satisfied with their care had 1.9 times the odds of reporting that consistent care was provided (CI: 1.4–2.4, p < 0.01), 1.8 times the odds of reporting compassionate care (CI: 1.4–2.5, p < 0.01) and 1.8 times the odds that they received help to cope with their emotions (CI: 1.4–2.3, p < 0.01). The model correctly predicted parent satisfaction 92% of the time. Conclusion: Provision of consistent prenatal care is an important quality indicator for this population of parents. The odds of securing satisfied parents increase when families are treated with compassion and given resources to help them cope with the emotionally devastating experiences associated with a life-limiting fetal diagnosis.

Palliative and End-of-Life Care for Newborns and Infants: From the National Association of Neonatal Nurses.

The changes in this revised statement reflect how we now view palliative care. Sixteen clinical recommendations span identification of eligible infants before and after birth, delineate components of a palliative care program, and discuss emotional support for parents, families, and healthcare provi

Instrument Development: Parental Satisfaction and Quality Indicators of Perinatal Palliative Care

The aim of this research was to produce an instrument that identifies and measures quality indicators and parental satisfaction in perinatal palliative care for parents who opt to continue a pregnancy with a life-limiting fetal diagnosis. The instrument was developed using current literature and recommendations from the National Consensus Project for Quality Palliative Care. A purposive sample of 14 experts provided guidance on construct and content validity. Open-ended questions and Likert scales were used to measure consensus about item relevancy. The instrument was piloted with parents to garner feedback on item clarity and relevance. Computer-mediated applications were used to conduct research using Delphi methodology. A panel of international experts participated until consensus was reached. Three rounds of analysis were completed to satisfy criteria for consensus related to constructs. Results indicate quality indicators can be defined and characterized. Items specific to parental needs during a pregnancy and birth were shown to be valid and were categorized into 8 domains of quality care. The instrument measures and reports patient-level data that will promote discipline-wide parental satisfaction and quality assessment and drive improvement initiatives. Use by clinicians and researchers will demonstrate a commitment to excellence and intentions to improve processes at the forefront of patient care.

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. METHOD This retrospective, correlational study used data from the National Home and Hospice Care Survey, which includes a nationally representative sample of hospice care providers. A multivariate logistic regression model was used to estimate the relationship between the delivery of culturally sensitive care and the nurse work environment. RESULTS Accreditation, teaching status, and baccalaureate-prepared registered nurse staff had an impact on the provision of culturally sensitive perinatal care Conclusions: The hospice and nursing unit environments, specifically in regards to education and technology, may be important contributors to the delivery of culturally sensitive care.

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. This cross-sectional, mixed method study was conducted to illuminate perceptions, practice barriers, familiarity with perinatal palliative care, clinician comfort, and referral comfort. The Perinatal Palliative Care Perceptions and Barriers Scale was self-administered online to 212 genetic counselors. Hierarchical multiple regression, used to test the hypothesis that perceptions, barriers to PPC, years of experience, personal comfort and prior familiarity with PPC explain variation in comfort of referral to PPC, yielded a significant overall R2 of .51. These findings are the first data describing genetic counselors’ perspectives and some of the factors contributing to referral comfort. Genetic counselors broadly endorsed the importance of palliative care concepts. They varied in their comfort with referral practices in ways that may be mitigated by increasing their familiarity with this evolving model of 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. Using a national database of perinatal hospice and palliative care providers, we describe the types of CAM therapies available and explore the influence of the nurse work environment on the availability of CAM therapies with multivariate regression analysis. This study shows that having an education environment where clinicians are trained, along with a highly educated registered nurse support staff, and a bachelor of science in nursing–educated staff was critical to the availability of CAM therapies. The clinical implications for hospice and palliative nurses caring for infants and their families are discussed.