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.

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. Overall, parents reported satisfaction with care (80.2%; n = 393). Parents satisfied with care reported higher agreement with quality indicator items for all subscales. In total, 17 items from the 41-item instrument revealed the ability to predict higher parental satisfaction when particular QI are reported. CONCLUSION: This study has led to credible insights into parental satisfaction with care given after the birth of an infant with a life-limiting condition. The findings contribute to development of a model with a good fit in ascertaining the importance of compassion, unhurried provider-patient communication and bereavement interventions.

"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. The contextual factors, conditions, and consequences surrounding the presence or absence of regret were analyzed. Data were retrieved from a cross-sectional study using the Quality of Perinatal Palliative Care and Parental Satisfaction Instrument. Participants were parents (N = 405) who experienced a life-limiting prenatal diagnosis and opted to continue their pregnancy. Secondary data analysis examined qualitative responses (121/402) to an item addressing regret. Dimensional analysis was used to examine data, identifying context, conditions, and consequences associated with the presence or absence of regret. Absence of regret was articulated in 97.5 percent of participants. Parents valued the baby as a part of their family and had opportunities to love, hold, meet, and cherish their child. Participants treasured the time together before and after the birth. Although emotionally difficult, parents articulated an empowering, transformative experience that lingers over time.

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 R (2) 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.

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. Study design: A descriptive prospective survey design was used to collect data at two time points, immediately following the training course and 6 months later. Frequency and descriptive statistics were used to measure the implementation of PNPC quality indicators, self-reported competence, and clinical facilitators and barriers. A t-test was used to compare participants' anticipated learning transfer to actual learning transfer. Two open-ended items assessed benefits and drawbacks of virtual training. Results: At course completion, participants anticipated opportunities to implement PNPC strategies with means of 84-87, and at the 6-month mark, the reported implementation had means ranging from 71 to 77. At 6 months post training, participants reported feeling competent/highly competent in each variable with frequency scores of 89%-98%. The opportunity to learn key concepts of PNPC and refresh skill sets ranked as the top facilitators, while the top barriers were the lack of opportunity to use PNPC principles and the lack of funding. Conclusion: Learning transfer after a virtual training course of PNPC proved to be successful, with a high rate of self-reported actual implementation and competence at 6 months after the training.

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.

The Perinatal Palliative Care Perceptions and Barriers Scale Instrument©: development and validation.

PURPOSE: To devise and test an instrument measuring clinician perceptions of perinatal palliative care (PPC) and barriers to care delivery. THEORY: PPC was theorized to involve the care of pregnant women and their families after prenatal testing resulted in a life-limiting fetal diagnosis. Both giving birth to a child with a life-limiting condition or termination of pregnancy for fetal anomaly can be emotionally traumatic life events. Clinicians were thought to face ethical dilemmas that involved approaches to care for this population. The ethical dilemmas were measured on a perceptions scale using items about informed consent, justice, beneficence, and autonomy. Barriers were theorized as obstacles to delivering quality PPC and included insufficient education, personal discomfort, and difficulty garnering team or administrative support for care. SUBJECTS: Licensed clinicians practicing in the perinatal field. DESIGN: Stage 1 entailed instrument development and validation, which was achieved through a Delphi study involving 11 expert panelists. The devised instrument included 64 six-point Likert items. In stage 2, a computer survey gathered data from a multidisciplinary, clinician group. METHODS: A total of 264 clinicians completed the survey. Exploratory factor analysis with varimax rotation was used to validate the instrument, evaluate the factors, and summarize the explained variance achieved by sum scores of the perceptions and barriers scales. MAIN OUTCOME MEASURES: The perceptions scale was reduced to 23 items with a 6-factor solution explaining 67% of the variance with a good internal consistency reliability of 0.77 (Cronbach α). The 22-item barriers scale had a 6-factor solution explaining 71% of the variance with an alpha reliability of 0.83. PRINCIPLE RESULTS: The Perinatal Palliative Care Perceptions and Practice Barriers Scale instrument is a valid and reliable measure of PPC perceptions and barriers for measuring the attitudes of physicians and nurses. CONCLUSION: Use of this instrument can foster educational programs and hospital planning for PPC teams that provide grieving families with the varied support they need. It is also a useful instrument for examining trends in the clinician perspectives and practice barriers as more genetic testing and subsequent terminal diagnoses occur.

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

Objective: 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. Study Design: 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. Descriptive and frequency data were analyzed to measure the implementation of PNPC QIs. Qualitative data were examined using content analysis. Results: Response rate was 34 of 76 (44.7%). Half of the QIs are implemented in clinical settings by course attendees more than 90% of the time, and 15 QIs are implemented between 70 and 89.9%. Colleagues within the same healthcare system applied palliative care practices less frequently than those who attended the training course. When asked if quality indicators were "always" implemented by colleagues, the average difference in scores was 36% lower. Qualitative analyses resulted in three themes that addressed changes in clinical practice, and four themes that summarized barriers in practice. Conclusion: There is high frequency of implementation of QIs by professionals who attended an evidence based PNPC training course. PNPC is implemented by the colleagues of attendees, but with less frequency. Attending evidence-based education increases clinicians' opportunities to translate quality PNPC care into clinical settings.

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. An interdisciplinary team is necessary to assist families throughout the pregnancy and postnatal journey, and coordination of such care is an integral component of palliative care services. The number of palliative care programs is increasing, but little is written about the origins of such programs, their subsequent growth, and how transitions of care occur within the programs. In this publication, we will present data garnered from interdisciplinary team members of a single organization, the Neonatal Comfort Care Program at Columbia University Irving Medical Center, and how they provide care for families throughout the pregnancy and postnatal trajectory. We will address the origin and growth of the program, the development of the interdisciplinary team, and the strategies used for high-quality communication and their respective impact on care continuity. We will also provide specific recommendations from data gathered from team members, examine the role of formal and informal education, and identify barriers and future opportunities.

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

Background: 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). Objective: The aim of this study was to assess the efficacy of a PNPC training course in improving the self-reported competence of participants. Study Design: A cross-sectional survey design was used to obtain data from 88 healthcare professionals who attended the PNPC training course. Data was collected using a validated questionnaire. The questionnaire included 32 items that queried participants about their self-assessed competence using a forced 1-4 Likert scale. The 32 items, which served as the outcome variables, were clustered into the eight domains of palliative care. The survey was administered through a web-based tool at the beginning and the conclusion of the course. Results: Results from two-sample t-tests comparing pre-test and post-test self-assessed competence were statistically significant for each item across disciplines. Additional analysis revealed that after participation in the training course, the statistically significant differences between physicians' and nurses' pre-course self-reported competence disappeared. Conclusion: The development of an evidence-based curriculum improved the self-reported competence of participants across disciplines, filled a specific gap in nurses' self-reported competence and addressed a global training need.

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. Physicians, nurses and administrators must encourage pregnancy loss support so that regardless of where in the facility the contact is made, when in the pregnancy the loss occurs, or whatever the conditions contributing to the pregnancy ending, trained caregivers are there to provide bereavement support for the family and palliative symptom management to the fetus born with a life limiting condition. The goal for respectful caregiving throughout an entire hospital system is achievable and critically important.

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.

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. 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.

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. High QI scores are associated with parental satisfaction. Parents who were satisfied reported 2.9 times the odds that their baby was treated with dignity and respect and 3.4 times the odds their medical care was addressed. This research is a first step in developing a robust measure of QIs in perinatal palliative care.

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.

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). Responses related to NCP Domain 1 (Structure and Process of Care) were analyzed using conventional content analysis. SUBJECTS: U.S. PPC program representatives (N = 75) from 30 states. RESULTS: The majority of programs have a care coordinator, but roles vary from direct patient care to program administration. Participants described a range of topics discussed during family meetings to determine parental goals across the perinatal period. Support and respect for parent preferences and choices were the most important components of care. Desired program outcomes include parental satisfaction with physical and psychosocial support, help with the decision-making process, opportunity to parent their infant, infant comfort, and positive personal and family growth. CONCLUSIONS: While PPC programs do not often measure quality, their goals are family centered, with a focus on parent satisfaction with decision making and psychosocial support. PPC programs coordinate interdisciplinary care by arranging meetings and advocating for families. More research is needed to understand parent perspectives on care provided.

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. METHODS: A cross sectional survey design gathered data using a computer-mediated platform. Subjects were parents (n=405) who opted to continue a pregnancy affected by a life-limiting diagnosis. Factor analysis using principal component analysis with Varimax rotation was used to validate the instrument, evaluate components, and summarize the explained variance achieved among quality indicator items. The Prenatal Scale was reduced to 37 items with a three-component solution explaining 66.19% of the variance and internal consistency reliability of 0.98. The Intrapartum Scale included 37 items with a four-component solution explaining 66.93% of the variance and a Cronbach α of 0.977. The Postnatal Scale was reduced to 44 items with a six-component solution explaining 67.48% of the variance. Internal consistency reliability was 0.975. RESULTS: The Parental Satisfaction and Quality Indicators of Perinatal Palliative Care Instrument is a valid and reliable measure for parent-reported quality care and satisfaction. CONCLUSION: Use of this instrument will enable clinicians and researchers to measure quality indicators and parental satisfaction. The instrument is useful for assessing, analyzing, and reporting data on quality for care delivered during the prenatal, intrapartum, and postnatal periods.

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. Recruitment was completed via email and flyer invitations and list serves. Physicians (n = 66) and advance practice nurses (n = 146) participated. T-test and Mann-Whitney U were used to examine differences in clinician-reported barriers to PPC. RESULTS: Physicians and nurses differ significantly in the barriers they report. Nurses expressed more obstacles at the healthcare systems level reporting difficulty in their ability to garner interdisciplinary support and gain administrative backing. Physicians are more confident in their ability to counsel patients than nurses. Members of both disciplines express similar feelings of distress and helplessness when caring for families expecting a fetal or neonatal demise. They also report a lack of societal support and understanding about PPC. CLINICAL IMPLICATIONS: Cultivating an environment of collaboration and interdisciplinary communication can benefit both caregivers and patients. Nurses have an opportunity to lead and promote PPC endeavors through participating in advantageous partnerships and research. Both disciplines may benefit from interventions directed at increasing their comfort in caring for patients in a palliative setting through targeted education and supportive staff services.