Facilitators and Barriers Affecting Implementation of Neonatal Palliative Care by Nurses in Mainland China.

Neonatal nurses in mainland China encounter various challenges when it comes to delivering palliative care to neonates. The aim of this study was to determine the barriers and facilitators of neonatal nurses' attitudes to palliative care for neonates in mainland China. A simplified Chinese version of the Neonatal Palliative Care Attitude Scale was piloted, administered, and analyzed using survey methods. Nurses in neonatal intensive care units in mainland China regardless of experience in the field were invited to take part in. Over a five-month period in 2019, we surveyed neonatal nurses from 40 hospitals in five provinces of China. The response rate was 92.5% (N = 550). This study identified eight facilitators and four barriers to neonatal palliative care implementation. In terms of nurses' attitudes on providing palliative care, younger and older nurses were more positive, whereas middle-aged nurses were less so. Nurses' emotional wellbeing was rarely impacted by neonatal death. They considered neonatal palliative care, particularly pain management, to be just as important as curative treatment. Parents were invited to participate in decision-making by nurses. Nurses reported having access to professional counseling and talking about their concerns with other healthcare professionals. The following barriers to neonatal palliative care were identified in this study that were not observed in the original English version scale research in 2009: a lack of clinicians, time, clinical skills, systematic education, neonatal palliative care experience, and social acceptance. Future research is required to investigate each barrier in order to improve the implementation of neonatal palliative care in mainland China.

Development of the Simplified Chinese version of neonatal palliative care attitude scale.

Background: The provision of palliative care for neonates who are not expected to survive has been slow in mainland China, and this model of care remains in its early stages. Evaluating nurses' attitudes toward neonatal palliative care (NPC) has the potential to provide valuable insight into barriers impeding NPC implementation. This study aimed to translate and adapt the traditional Chinese version of the Neonatal Palliative Care Attitude Scale (NiPCAS) into Simplified Chinese to assess its psychometric properties. Methods: The NiPCAS is a valid and reliable instrument to measure nurses' attitudes for evidence-based practice. To date, the scale has not been used largely in mainland China. With translation and cultural adaptation, the traditional Chinese version of the NiPCAS was developed into a Simplified Chinese version. Its reliability was tested using internal consistency and test-retest reliability, and its validity was measured using the content validity index and exploratory factor analysis. Results: A total of 595 neonatal nurses from mainland China were recruited. Twenty-six items in the scale were translated into Simplified Chinese. The scale demonstrated excellent reliability with a Cronbach's α coefficient of 0.87 and a test-retest reliability of 0.88. To support the Simplified Chinese version of NiPCAS, the scale content validity score was 0.98, and the exploratory factor analysis revealed five factors representing the conceptual dimensions of the scale. Conclusion: This study demonstrated the psychometric properties of the Simplified Chinese version of NiPCAS, validated its use as a viable tool for measuring neonatal nurses' attitudes toward NPC, and identified facilitators and barriers to NPC adoption. Our findings suggested supported clinical application in the context of mainland China. A confirmatory factor-analysis approach with a different sample of neonatal nurses is required for further testing of the instrument in the future.

Truth telling and severe fetal diagnosis: a virtue ethics perspective.

PURPOSE: Increased use of prenatal technologies has increased the numbers of women and partners whose fetus is diagnosed with a severe impairment. Virtue ethics provides a useful perspective to consider truth telling in this context, specifically how couples and providers interpret the diagnosis and prognosis to create truth. Virtue ethics is person-centered rather than act-centered, with moral actions guided by how a virtuous person would act in the same circumstance. Phronesis (practical wisdom) guides these actions. SUBJECTS AND METHODS: Fifteen women and 10 male partners with a severe fetal diagnosis participated in this longitudinal ethnography examining their experiences across 3 available care options: termination, routine obstetric care, and perinatal end-of-life care. Data from 39 interviews were analyzed to determine how they created meaning and truth in context of the diagnosis. RESULTS AND CONCLUSIONS: Providers' interactions were usually, but not always, characterized by the practice of phronesis. Couples were in a more complex moral situation than were providers. Those who terminated created a socially acceptable truth within a negative social environment related to abortion. Those seeking routine care had uncertain fetal prognoses and struggled with the meanings of "odds" of survival. One couple with end-of-life care experienced a close alignment of the facts and the truth they made public.

Interconception care for couples after perinatal loss: a comprehensive review of the literature.

Perinatal loss can be emotionally devastating for couples who experience miscarriage, fetal or neonatal death. Nurses in a variety of settings can assist couples through their grief by providing emotional support, giving information about the grief process, and in planning for a future pregnancy or deciding to forego future childbearing. This article explicates the relationship between grief and perinatal loss and its effects on couples, specifically in the interconception period, when the initial grief and distress have begun to subside. Interconception care focuses on bridging the couple from the end of the postpartum period to the subsequent pregnancy or decision not to conceive again. Nurses assist couples in distinguishing between uncomplicated grief, complicated grief, and depression, and make appropriate referrals. Openness to expressions of grief, helping couples mobilize support, considering readiness for another pregnancy, and directing couples to useful Internet sites are essential nursing interventions.

Stillbirth at Term: Grief Theories for Care of Bereaved Women and Families in Intrapartum Settings.

Death in intrapartum settings poses a paradox for providers, whose expertise may be limited in assisting bereaved women and families facing the trauma of stillbirth. Many providers are familiar with Kübler-Ross' stage theory of grief; however, more recent theories augment her early work in care of bereaved persons. Through an evolving case study of a couple for whom pregnancy ends in stillbirth at term, 4 theories of grief-loss of the assumptive world, the dual process model, continuing bonds, and complicated grief-are presented to assist intrapartum care providers toward more comprehensive understanding of the complexities of grief responses not fully explained by simple stage theory. These 4 theories are not prescriptive, nor are they comprehensive; however, they are highly relevant and foundational for current understanding of responses and needs of bereaved women and families for whom pregnancy ends in death.

Life course theory as a framework to examine becoming a mother of a medically fragile preterm infant.

Life course theory, a sociological framework, was used to analyze the phenomenon of becoming a mother, with longitudinal narrative data from 34 women who gave birth prematurely after a high-risk pregnancy, and whose infant became medically fragile. Women faced challenges of mistimed birth and mothering a technologically dependent infant. Before social ties were established, legal and biological ties required mothers to make critical decisions about their infants. Liminality characterized mothers' early involvement with their infants. The mothers worked to know, love, and establish deeper attachments to this baby. The infant's homecoming was a key turning point; it decreased liminality of early mothering, increased mothers' control of infants' care, and gave them time and place to know their infants more intimately.

A Systematic Review of Health Care Provider-Perceived Barriers and Facilitators to Routine HIV Testing in Primary Care Settings in the Southeastern United States.

Despite efforts to improve HIV screening and testing, many primary care settings do not follow established guidelines. The purpose of our systematic review was to describe health care providers' perceived barriers and facilitators to testing for HIV at poorly used/novel testing sites in the southeastern United States. PubMed, CINAHL, and Embase databases were searched for peer-reviewed studies of providers' perceived barriers and facilitators to routine HIV testing from January 2016 to April 2017 according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) statement. Of 708 papers retrieved, 12 met inclusion criteria and were analyzed. Barriers to HIV testing in primary care existed at the societal, organizational, and individual levels. Providers need continuing sexual health education, including HIV and federal guideline updates, and students should have clinical experiences to supplement knowledge about sexual health. Clinic protocols should be updated to meet current policy guidelines.

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.

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.

Calculating the risks and benefits of disclosure in African American women who have HIV.

OBJECTIVE: To identify the processes involved in and the patterns of disclosure of their HIV diagnosis reported by African American women. DESIGN: Qualitative descriptive. SETTING: Southeastern United States; nurse visits in the homes of the participants. PARTICIPANTS: Forty-eight African American women who were HIV-positive and were primary caretakers of young children. MAIN OUTCOME MEASURE: Field notes were analyzed using content analysis. RESULTS: Once the women learned they had HIV, they were faced with the issue of determining "what is at stake" in telling others of their diagnosis. This dilemma was characterized by the threat of stigma, feelings of shame, and the concurrent need for support. The women determined a calculus of disclosure in determining to whom and when to reveal their HIV diagnosis. This calculus involved a careful evaluation of the risks and benefits involved in disclosing their illness. Risks of telling were fueled by societal and experienced stigma associated with HIV, whereas the benefits were primarily fueled by personal needs. The calculus of disclosure was a recursive process, with decisions made and remade over time. Disclosure patterns ranged from secretive to full disclosure. CONCLUSIONS: Issues related to stigma and therefore to disclosure of a diagnosis of HIV are highly relevant to HIV-positive African American women. Nurses have an important role in supporting women regarding their disclosure decisions.

Care of preterm infants: programs of research and their relationship to developmental science.

The purpose of this review was to examine the topics covered in current programs of nursing research on the care of the preterm infant and to determine the extent to which this research is informed by developmental science. A researcher was considered to have a current program of research if he or she had at least five publications published since 1990 and was the first author on at least three of them. The infants in a study could be any age from birth throughout childhood; studies focusing on parenting, nursing, or other populations of infants were not included. Seventeen nurse researchers had current programs of research in this area. These programs had four themes. Those of Becker, Evans, Pridham, Shiao, and Zahr focused on infant responses to the neonatal intensive care unit (NICU) environment and treatments. Franck, Johnston, and Stevens focused on pain management. Harrison, Ludington-Hoe, and White-Traut's research focused on infant stimulation. Holditch-Davis, McCain, McGrath, Medoff-Cooper, Schraeder, and Youngblut studied infant behavior and development. These research programs had many strengths, including strong interdisciplinary focus and clinical relevance. However, additional emphasis is needed on the care of the critically ill infant. Also, despite the fact that the preterm infant's neurological system develops rapidly over the first year, only three of these researchers used a developmental science perspective. Only research on infant behavior and development focused on the developmental changes that the infants were experiencing. Most of the studies were longitudinal, but many did not use statistics appropriate for identifying stability and change over time. The response of individual infants and the broader ecological context as evidenced by factors such as gender, ethnic group, culture, and intergenerational effects were rarely examined. Thus research on the care of preterm infants could be expanded if the developmental science perspective formed the basis of more studies.

Contexts of reproductive loss in lesbian couples.

Lesbian couples seek to become parents in a heteronormative world and in the context of complex biological, social, and legal challenges that may constrain same-sex parenting. Because of these constraints and challenges, lesbian couples experiencing a reproductive loss may encounter issues that heterosexual couples typically will not. Prior to pregnancy, lesbians may experience loss and grief because they cannot conceive a child together without the assistance of a third party. Same-sex families are marginalized; simply deciding to become parents leaves them open to criticism and negative judgment. If pregnancy is not achieved or does not end in a live birth, lesbian couples face decisions about how, whether, and who to conceive a subsequent pregnancy. Although laws vary by state, the social (nonbiological) mother may not have legal status as the child's parent; therefore, the decision of which partner to become pregnant is especially significant. In the event of a reproductive loss, the grief of the social mother might not be acknowledged. Lesbian couples will benefit from the care of a nurse who understands and is accepting of the complex contexts within which they face the challenges of reproductive loss.

An HIV self-care symptom management intervention for African American mothers.

BACKGROUND: Human immunodeficiency virus (HIV) infection has become a serious health problem for low-income African American women in their childbearing years. Interventions that help them cope with feelings about having HIV and increase their understanding of HIV as a chronic disease in which self-care practices, regular health visits, and medications can improve the quality of life can lead to better health outcomes. OBJECTIVE: This study aimed to determine the efficacy of an HIV self-care symptom management intervention for emotional distress and perceptions of health among low-income African American mothers with HIV. METHOD: Women caregivers of young children were randomly assigned to self-care symptom management intervention or usual care. The intervention, based on a conceptual model related to HIV in African American women, involved six home visits by registered nurses. A baseline pretest and two posttests were conducted with the mothers in both groups. Emotional distress was assessed as depressive symptoms, affective state, stigma, and worry about HIV. Health, self-reported by the mothers, included the number of infections and aspects of health-related quality of life (i.e., perception of health, physical function, energy, health distress, and role function). RESULTS: Regarding emotional distress, the mothers in the experimental group reported fewer feelings of stigma than the mothers in the control group. Outcome assessments of health indicated that the mothers in the experimental group reported higher physical function scores than the control mothers. Within group analysis over time showed a reduction in negative affective state (depression/dejection and tension/anxiety) and stigma as well as infections in the intervention group mothers, whereas a decline in physical and role function was found in the control group. CONCLUSIONS: The HIV symptom management intervention has potential as a case management or clinical intervention model for use by public health nurses visiting the home or by advanced practice nurses who see HIV-infected women in primary care or specialty clinics.