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. A Delphi study involving 16 experts was conducted to validate the content and construct. Through three rounds of online questionnaires using open-ended questions and Likert scales, consensus on item clarity and relevancy was established. The resulting items were then piloted with former fetal care center patients via a web-based survey. The instrument's reliability and validity were validated using Cronbach's α and exploratory factor analysis, respectively. Concurrent validity was assessed by comparing scores with the Revised Patient Perception of Patient-Centeredness (PPPC-R) Questionnaire. RESULTS: 258 participants completed the 48-item pilot PCC-FCC survey, categorized into six domains. Factor analysis yielded a 2-factor, 28-item scale. Internal consistency of the final scale had good reliability (α = 0.969). Data supported content, construct, and concurrent validity. CONCLUSION: The PCC-FCC Scale is a reliable and valid measure of person-centered care in U.S. FCCs. It can be used to enhance services and begin connecting person-centered care to maternal-child health outcomes.

"We All Want to Be Able to Tell You Something Hopeful": Clinicians' Experiences Providing Maternal-Fetal Surgery Counseling.

INTRODUCTION: Prenatal counseling about maternal-fetal surgery can be traumatic and confusing for pregnant people. It can also be technically and emotionally complex for clinicians. As maternal-fetal surgery rapidly advances and becomes more common, more evidence is needed to inform counseling practices. The objective of this study was to develop a deeper understanding of the methods clinicians currently use to train for and provide counseling, as well as their needs and recommendations for future education and training. METHODS: We used interpretive description methods and interviewed interprofessional clinicians who regularly counsel pregnant people about maternal-fetal surgery. RESULTS: We conducted 20 interviews with participants from 17 different sites who were maternal-fetal medicine specialists (30%), pediatric surgeons (30%), nurses (15%), social workers (10%), a genetic counselor (5%), a neonatologist (5%), and a pediatric subspecialist (5%). Most were female (70%), non-Hispanic white (90%), and practiced in the Midwest (50%). We identified four overarching themes: (1) contextualizing maternal-fetal surgery counseling; (2) establishing shared understanding; (3) supporting decision-making; and (4) training for maternal-fetal surgery counseling. Within these themes, we identified key practice differences among professions, specialties, institutions, and regions. CONCLUSION: Participants are committed to practicing informative and supportive counseling to empower pregnant people to make autonomous decisions about maternal-fetal surgery. Nevertheless, our findings indicate a dearth of evidence-based communication practices and guidance. Participants identified significant systemic limitations affecting pregnant people's decision-making options related to maternal-fetal surgery.

Understanding Sociodemographic Disparities in Maternal-Fetal Surgery Study Participation.

BACKGROUND/PURPOSE: Although maternal-fetal surgery to treat fetal anomalies such as spina bifida continues to grow more common, potential health disparities in the field remain relatively unexamined. To address this gap, we identified maternal-fetal surgery studies with the highest level of evidence and analyzed the reporting of participant sociodemographic characteristics and representation of racial and ethnic groups. METHODS: We conducted a systematic review of the scientific literature using biomedical databases. We selected randomized control trials (RCTs) and cohort studies with comparison groups published in English from 1990 to May 5, 2020. We included studies from across the globe that examined the efficacy of fetal surgery for twin-twin transfusion syndrome (TTTS), obstructive uropathy, congenital diaphragmatic hernia (CDH), myelomeningocele (MMC), thoracic lesions, cardiac malformations, or sacrococcygeal teratoma. We determined the frequency of reporting of age, gravidity/parity, race, ethnicity, education level, language spoken, insurance, income level, and relationship status. We identified whether sociodemographic factors were used as inclusion or exclusion criteria. We calculated the racial and ethnic group representation for studies in the USA using the participation-to-prevalence ratio (PPR). RESULTS: We included 112 studies (10 RCTs, 102 cohort) published from 1990-1999 (8%), 2000-2009 (30%), and 2010-2020 (62%). Most studies were conducted in the USA (47%) or Europe (38%). The median sample size was 58. TTTS was the most common disease group (37% of studies), followed by MMC (23%), and CDH (21%). The most frequently reported sociodemographic variables were maternal age (33%) and gravidity/parity (20%). Race and/or ethnicity was only reported in 12% of studies. Less than 10% of studies reported any other sociodemographic variables. Sociodemographic variables were used as exclusion criteria in 13% of studies. Among studies conducted in the USA, White persons were consistently overrepresented relative to their prevalence in the US disease populations (PPR 1.32-2.11), while Black or African-American, Hispanic or Latino, Asian, American-Indian or Alaska-Native, and Native-Hawaiian or other Pacific Islander persons were consistently underrepresented (PPR 0-0.60). CONCLUSIONS: Sociodemographic reporting quality in maternal-fetal surgery studies is poor and inhibits examination of potential health disparities. Participants enrolled in studies in the USA do not adequately represent the racial and ethnic diversity of the population across disease groups.

Family Caregiver Support of Patient Self-Management During Chronic, Life-Limiting Illness: A Qualitative Metasynthesis.

Family caregivers play an integral role in supporting patient self-management, yet how they perform this role is unclear. We conducted a qualitative metasynthesis of family caregivers' processes to support patient self-management of chronic, life-limiting illness and factors affecting their support. Methods included a systematic literature search, quality appraisal of articles, data abstraction, and data synthesis to produce novel themes. Thirty articles met inclusion criteria, representing 935 international family caregivers aged 18 to 89 years caring for patients with various health conditions. Three themes characterized family caregivers' processes to support patient self-management: "Focusing on the Patient's Illness Needs," "Activating Resources to Support Oneself as the Family Caregiver," and "Supporting a Patient Living with a Chronic, Life-Limiting Illness." Factors affecting family caregivers' support included Personal Characteristics, Health Status, Resources, Environmental Characteristics, and the Health Care System. The family caregiver role in supporting patient self-management is multidimensional, encompassing three processes of care and influenced by multiple factors.

Electrocardiographic intervals in foetuses with CHD.

OBJECTIVES: To assess foetal electrocardiographic intervals across gestational age among foetuses with and without congenital heart disease, and to investigate differences between groups. DESIGN: A prospective observational cohort study. SETTING: Center for Prenatal Pediatrics, Morgan Stanley Children's Hospital of New York-Presbyterian. Population or sample A total of 92 participants with singleton pregnancies, 41 with normal anatomy and 51 with congenital heart disease were included in this study. METHODS: Using a maternal abdominal monitor, foetal electrocardiogram was obtained serially from foetuses with and without congenital heart disease at 20-24 weeks (F1), 28-32 weeks (F2), and 34-38 weeks (F3) of gestation. A signal-averaged waveform was calculated, and PR, QRS, and QT intervals were measured. Intervals from controls were compared with gestational age norms. Using Pearson's correlation coefficient, we analysed the relationship between gestational age and foetal electrocardiographic intervals. Intervals from control and congenital heart disease foetuses were compared by Student's t-test. RESULTS: PR (r=0.333, p=0.02) and QRS (r=0.248, p=0.05) intervals correlated with gestational age only among controls. QRS intervals in foetuses with congenital heart disease were significantly longer than controls at F1 (63 ± 6 versus 52 ± 5 ms, p<0.001), F2 (61 ± 8 versus 56 ± 7 ms, p=0.02), and F3 (64 ± 10 versus 56 ± 9 ms, p=0.007). CONCLUSIONS: PR and QRS intervals lengthen across gestational age among foetuses with normal cardiac anatomy but not in foetuses with congenital heart diseases. As early as 20 weeks of gestation, differences between foetuses with and without congenital heart disease are discernible, with congenital heart disease foetuses demonstrating longer QRS intervals compared with controls.

The Role of Midwives in US Perinatal Palliative Care: A Scoping Review.

INTRODUCTION: Perinatal palliative care (PPC) is a rapidly growing and essential reproductive health care option for pregnant persons with a diagnosed life-limiting fetal condition who continue their pregnancy. The provision of PPC is within the scope of basic midwifery competencies, and midwives are well-positioned to make unique and valuable contributions to interprofessional PPC teams. However, little is known about midwives' past or current involvement in PPC in the United States. METHODS: This scoping review of the literature investigated what is known about the role of midwives in PPC in the United States. Multiple databases of published literature were used for this review: PubMed, CINAHL, Embase, Web of Science, ProQuest, Google Scholar, and relevant citations from identified studies. All types of English language publications addressing midwives' involvement in PPC in the United States were included, without any limitations on publication date. RESULTS: The role and contributions of midwives in PPC is not well represented in existing literature. Of the 259 results identified, 7 publications met criteria for inclusion. These included 5 case reports, one quantitative research article, and one conference abstract. Midwives are involved in PPC through the provision of direct clinical care (including antepartum, intrapartum, postpartum, neonatal, bereavement, postmortem, and follow-up care) and care planning and coordination as part of an interprofessional team. DISCUSSION: Despite midwives being uniquely positioned to provide holistic, family-centered, and person-centered care in situations of pregnancy with life-limiting fetal conditions, there is limited literature about their involvement in PPC in the United States. PPC should be incorporated into midwifery education and training programs. Midwives should play a central role in shaping future research and policies to ensure the accessibility and quality of PPC.

"I don't have a telephone to the fetus": Clinicians' conceptions of fetal patienthood in maternal-fetal surgery counseling.

RATIONALE: Maternal fetal surgery (MFS) has developed rapidly since the 1960s and centers for fetal diagnosis and therapy (CFDT) have proliferated. As a result, CFDT clinicians have intervened with fetuses through pregnant bodies for decades, yet the patienthood status of the fetus and its implications for the pregnant person's autonomy have been relatively unexamined. OBJECTIVE: Our overall research aims were threefold: (1) to explore how clinicians train for and provide counseling for MFS; (2) to examine how clinicians assess fetal patienthood and its implications; and (3) to understand clinicians' professed needs and their recommendations for education and training for the provision of MFS counseling. This focuses on aim two. METHOD: In this qualitative study, conducted using in-depth interviews, we examined how 20 clinicians from 17 different sites understood fetal patienthood, how that affected their counseling of pregnant patients, and whether they drew on extant ethical frameworks for guidelines. RESULTS: We identified three major themes: 1) Clinicians entered fetal surgery consultations with assumptions about fetal patienthood (frequently informed by beliefs about fetal viability, maternal attachment, and disciplinary perspectives); 2) they consciously assessed their pregnant patients' connections to their fetus to inform or re-calibrate their own understandings of fetal patienthood; and 3) they used a threshold -based conceptualization whereby the fetus achieved patienthood after crossing a symbolic boundary, often related to the clinician's ability to intervene. CONCLUSIONS: Few clinicians invoked an extant ethical framework to determine fetal patienthood; most asserted that they did not view directive counseling toward MFS as appropriate, instead working diligently to protect pregnant patients' autonomy and rights to self-determination.

Fetal Care Nursing-The Birth of a Specialty.

With the rapid growth of specialized fetal care centers (FCCs) across the United States, a new area of nursing practice has emerged. Fetal care nurses provide care in FCCs to pregnant persons experiencing complex fetal conditions. This article describes the unique practice of fetal care nurses necessitated by the complexity of perinatal care and the provision of maternal-fetal surgery in FCCs. The Fetal Therapy Nurse Network has played a significant role in the evolution of this nursing practice and will serve as a platform for the generation of core competencies and the development of a potential specialty certification for fetal care nurses.

Care Levels for Fetal Therapy Centers.

Fetal therapies undertaken to improve fetal outcome or to optimize transition to neonate life often entail some level of maternal, fetal, or neonatal risk. A fetal therapy center needs access to resources to carry out such therapies and to manage maternal, fetal, and neonatal complications that might arise, either related to the therapy per se or as part of the underlying fetal or maternal condition. Accordingly, a fetal therapy center requires a dedicated operational infrastructure and necessary resources to allow for appropriate oversight and monitoring of clinical performance and to facilitate multidisciplinary collaboration between the relevant specialties. Three care levels for fetal therapy centers are proposed to match the anticipated care complexity, with appropriate resources to achieve an optimal outcome at an institutional and regional level. A level I fetal therapy center should be capable of offering fetal interventions that may be associated with obstetric risks of preterm birth or membrane rupture but that would be very unlikely to require maternal medical subspecialty or intensive care, with neonatal risks not exceeding those of moderate prematurity. A level II center should have the incremental capacity to provide maternal intensive care and to manage extreme neonatal prematurity. A level III therapy center should offer the full range of fetal interventions (including open fetal surgery) and be able manage any of the associated maternal complications and comorbidities, as well as have access to neonatal and pediatric surgical intervention including indicated surgery for neonates with congenital anomalies.

The parental journey of fetal care: a systematic review and metasynthesis.

OBJECTIVE: This study aimed to synthesize the qualitative literature on parental experiences of fetal care to reflect events that happened across the continuum of care and to better understand parents' positive and negative experiences with care delivery. DATA SOURCES: Eligible studies published until June 2020 were retrieved from MEDLINE, Embase, Cochrane Central Register of Controlled Trials, EBSCO CINAHL, Web of Science, and ProQuest. STUDY ELIGIBILITY CRITERIA: Studies must have been: (1) published in English in a peer-reviewed journal or in ProQuest, (2) available in full text, (3) contained a qualitative component, and (4) focused on expectant parents' experiences of tertiary, coordinated, multidisciplinary prenatal diagnosis and care related to a fetal anomaly. STUDY APPRAISAL AND SYNTHESIS METHODS: Researchers used the Joanna Briggs Institute Critical Appraisal Checklist for Qualitative Research. A metastudy and an interpretive description approach was taken to synthesize the events that happened across the continuum of care and the themes associated with a positive care experience. RESULTS: The metasynthesis included 13 studies and 217 patients from 11 different multidisciplinary fetal diagnosis and intervention practices across North America and Europe. We identified key events that influenced parental experience of fetal care across the continuum. The themes associated with a positive care experience are parents (1) gaining understanding and feeling understood, (2) realizing agency and control, and (3) finding hope and meaning. We identified aspects of healthcare delivery that served as barriers or facilitators to these positive experiences. CONCLUSION: Understanding the commonalities of the parental experience of fetal care across diverse settings creates a foundation for improving care and better meeting the needs of parents undergoing a painful and life-defining event. Although health outcomes are not always positive, a positive experience of care is possible and can assist parents to cope with their grief, manage their expectations, and engage in their care. The findings of this study illustrate the ways in which healthcare delivery can facilitate or obstruct a positive care experience.

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.

Integrative Review of Nursing Practices in Fetal Therapy.

OBJECTIVE: To synthesize nursing practices related to fetal therapy (intervention to correct or treat a fetal anomaly). DATA SOURCES: We searched electronic databases, including PubMed, Embase, OvidSP, and CINAHL, for all relevant published work. We identified additional resources through discussion with experts in the field, hand searches of relevant resources, and examination of the reference lists of articles in our search results. STUDY SELECTION: Any published literature about fetal therapy in which nursing practices were discussed by nurses. DATA EXTRACTION: We used Whittemore and Knafl's methodology to guide this integrative review (2005). We completed data extraction using an analytic review template organized to compare results to Kim's (2015) theoretical framework for nursing practice. DATA SYNTHESIS: We used qualitative techniques described by Miles, Huberman, and Saldaña (2014) to code and thematically interpret the data. Nurses described their contributions to the establishment of fetal therapy programs through the development of entirely new technical and caring skills and their work in relation to care quality, clinician education, ethics, research, and health policy. Data were synthesized under three philosophies of nursing practice: therapy, care, and professional work. CONCLUSION: Nurses have made important contributions to the evolving practice of fetal therapy, a nuanced practice that is critical to the development and provision of comprehensive patient- and family-centered care. Clinical implications of this review include practical recommendations for enhanced support of nursing practice in fetal therapy, which includes the provision of reliable forums to learn and share feedback about nursing practice in this field. Future work should focus on increasing understanding and visibility of nursing in fetal therapy through interdisciplinary evidence-based practice development.

Post-Laser Twin Anemia Polycythemia Sequence: Diagnosis, Management, and Outcome in an International Cohort of 164 Cases.

The aim of this study was to investigate the management and outcome in the post-laser twin anemia polycythemia sequence (TAPS). Data of the international TAPS Registry, collected between 2014 and 2019, were used for this study. The primary outcomes were perinatal mortality and severe neonatal morbidity. Secondary outcomes included a risk factor analysis for perinatal mortality and severe neonatal morbidity. A total of 164 post-laser TAPS pregnancies were included, of which 92% (151/164) were diagnosed antenatally and 8% (13/164) postnatally. The median number of days between laser for TTTS and detection of TAPS was 14 (IQR: 7-28, range: 1-119). Antenatal management included expectant management in 43% (62/151), intrauterine transfusion with or without partial exchange transfusion in 29% (44/151), repeated laser surgery in 15% (24/151), selective feticide in 7% (11/151), delivery in 6% (9/151), and termination of pregnancy in 1% (1/151). The median gestational age (GA) at birth was 31.7 weeks (IQR: 28.6-33.7; range: 19.0-41.3). The perinatal mortality rate was 25% (83/327) for the total group, 37% (61/164) for donors, and 14% (22/163) for recipients (p < 0.001). Severe neonatal morbidity was detected in 40% (105/263) of the cohort and was similar for donors (43%; 51/118) and recipients (37%; 54/145), p = 0.568. Independent risk factors for spontaneous perinatal mortality were antenatal TAPS Stage 4 (OR = 3.4, 95%CI 1.4-26.0, p = 0.015), TAPS donor status (OR = 4.2, 95%CI 2.1-8.3, p < 0.001), and GA at birth (OR = 0.8, 95%CI 0.7-0.9, p = 0.001). Severe neonatal morbidity was significantly associated with GA at birth (OR = 1.5, 95%CI 1.3-1.7, p < 0.001). In conclusion, post-laser TAPS most often occurs within one month after laser for TTTS, but may develop up to 17 weeks after initial surgery. Management is mostly expectant, but varies greatly, highlighting the lack of consensus on the optimal treatment and heterogeneity of the condition. Perinatal outcome is poor, particularly due to the high rate of perinatal mortality in donor twins.

Maternal Anxiety Related to Prenatal Diagnoses of Fetal Anomalies That Require Surgery.

OBJECTIVES: To investigate maternal anxiety in women with pregnancies complicated by fetal anomalies that require surgery. DESIGN: Prospective comparison pilot study. SETTING: A fetal care center in a Northeastern U.S. academic medical center. PARTICIPANTS: Women in their second or early third trimesters of pregnancy; 19 with pregnancies complicated by fetal anomalies and 25 without. METHODS: After ultrasonography, all participants completed the Spielberger State-Trait Anxiety Inventory and a sociodemographic questionnaire. Participants with pregnancies complicated by fetal anomalies also answered questions about the causes of their anxiety, their awareness of the nurse care coordinator service, and desired methods of emotional support. Obstetric and mental health history data were abstracted from the medical records of both groups. RESULTS: Participants with pregnancies complicated by fetal anomalies had greater mean state anxiety scores than those without (43.58 vs. 29.08, p = .002). Maternal age was positively correlated with the state anxiety in women with fetuses with anomalies (r = 0.59, p = .008). Participants with histories of mental health issues had greater mean trait anxiety scores than those without (39.2 vs. 32.2, p = .048). Most participants (68%) reported that knowledge of the fetal care center's nurse care coordinator decreased their anxiety. Participants wanted the opportunity to speak with families who had similar experiences as a source of emotional support. CONCLUSION: Older maternal age may be a risk factor for anxiety in this population. Knowledge of the fetal care center nurse care coordinator service may have a positive effect and should be studied further.

Autonomic regulation in fetuses with congenital heart disease.

BACKGROUND: Exposure to antenatal stressors affects autonomic regulation in fetuses. Whether the presence of congenital heart disease (CHD) alters the developmental trajectory of autonomic regulation is not known. AIMS/STUDY DESIGN: This prospective observational cohort study aimed to further characterize autonomic regulation in fetuses with CHD; specifically hypoplastic left heart syndrome (HLHS), transposition of the great arteries (TGA), and tetralogy of Fallot (TOF). SUBJECTS: From 11/2010 to 11/2012, 92 fetuses were enrolled: 41 controls and 51 with CHD consisting of 19 with HLHS, 12 with TGA, and 20 with TOF. Maternal abdominal fetal electrocardiogram (ECG) recordings were obtained at 3 gestational ages: 19-27 weeks (F1), 28-33 weeks (F2), and 34-38 weeks (F3). OUTCOME MEASURES: Fetal ECG was analyzed for mean heart rate along with 3 measures of autonomic variability of the fetal heart rate: interquartile range, standard deviation, and root mean square of the standard deviation of the heart rate (RMSSD), a measure of parasympathetic activity. RESULTS: During F1 and F2 periods, HLHS fetuses demonstrated significantly lower mean HR than controls (p<0.05). Heart rate variability at F3, as measured by standard deviation, interquartile range, and RMSSD was lower in HLHS than controls (p<0.05). Other CHD subgroups showed a similar, though non-significant trend towards lower variability. CONCLUSIONS: Autonomic regulation in CHD fetuses differs from controls, with HLHS fetuses most markedly affected.