Childbearing trans and nonbinary people are confronted with the heteronormative and cisgender frameworks that underpin “maternity” services. We explored the educational needs of 108 perinatal staff in the United Kingdom as related to the needs of trans and nonbinary service users. Participants were most confident in formulating care plans and least confident about the provision of colleagues’ perinatal care in this context. While the majority of participants were positive toward the trans and nonbinary communities, they considered that those (...) communities remain marginalized in perinatal services. Transphobic, anti-trans, and nonbinary attitudes were highlighted by our respondents. Our findings suggest that caregivers witnessed transphobia among colleagues and were apprehensive themselves about providing care to childbearing trans and nonbinary people. They reported a cisheteronormative model of care that lacked awareness of trans and nonbinary issues. The educational needs identified included information about the practicalities of childbearing as a trans or nonbinary person, how to use inclusive language effectively, and creating policies and processes for supporting childbearing trans and nonbinary people. These caregivers’ preferences included hearing from trans and nonbinary people and sharing best practices among themselves, with open discussions about how to be inclusive. (shrink)

In the past four decades, obstetric and neonatal care practices have changed dramatically throughout the western world. As a result, humans now confront unprecedented situations for which they have no biological preparation or cultural experience. In these special issues, an integrated view of the evolving practices of birthing and infant care are discussed from a variety of perspectives. Contributors attempt to show how understanding of the biomedical and psychosocial issues can be informed by cross-cultural and cross-species evidence concerning birth management, (...) neonatal care, and early development. The individual contributions are summarized in this introductory article. (shrink)

AimBased on the Theory of Reasoned Action, we examined whether attitudes of nurses from different ethnic groups, subjective norms, behavioral intentions, assessments of relationships and communication were associated with their perceptions of the quality of perinatal care provided to lesbian women.BackgroundNurses administer healthcare, provide pertinent information and consultation to lesbians from pregnancy planning through birth.IntroductionDuring the past few decades, worldwide, there has been a rise in lesbian-parenting. Despite the changes in Israeli society’s public and legal reality, intolerance and discrimination (...) to the homosexual population is still prevalent in Israel’s healthcare system.MethodsA cross-sectional study conducted between 12/2015-4/2016. Of the 270 nurses approached, 184 completed a self-report anonymous questionnaire.FindingsThis is an important and timely study reflecting nurses’ perceptions of the quality of perinatal care provided to lesbians. The study findings reflect that attitudes, subjective norms, behavioral intentions, assessments of relationships and communication of nurses from different ethnic groups are associated with their perceptions of the quality of perinatal care provided to the lesbians. The hierarchical regression analysis demonstrated that attitudes, subjective norms, behavioral intentions, assessments of relationships and communication of nurses contributed 56% to the variance of nurses’ perception of their own quality of perinatal care.DiscussionTRA conceptualization predicted the quality of care of nurses from different ethnic groups treating lesbians in a perinatal setting.ConclusionTRA provides a useful framework for understanding and predicting the motivational effect of health care personnel with the lesbian population, being at risk for stigmatization and receiving less quality perinatal care.Implications for nursing and heath policyOur findings revealed the importance of formulating a recognized policy in the field of LGBT medicine at the national level. Further training of nurses as to the lesbians’ unique health needs, might improve the nurses’ relationships and communication as well as the quality of perinatal nursing care. (shrink)

Pope Francis beautifully describes how the perinatal journey starts in mystery. Doctors may forget this. We focus on the science that may partially explain how conception and implantation occur, how the placenta functions, and the gradual development of embryo and fetus. But science cannot address that meta-physical—or spiritual—reality. The question of “why?” is never too far away from the minds of expectant parents. Why now? Why me? Why did my baby develop these terrible problems? Why is my life being (...) challenged in this way? Maternal-fetal “cross-talk” is a reality that cannot be denied. It occurs both when the fetus is quiet and when the fetus is active. It may be facilitated by fetal imaging—an ultrasound of... (shrink)

In May 2019, an international conference on perinatal palliative care entitled “Yes to Life! Taking Care of the Precious Gift of Life in Its Frailty” was held in Rome. It was organized by the Italian nonprofit foundation Il Cuore in Una Goccia and the Vatican’s Dicastery for Laity, Family and Life. Pope Francis greeted the participants personally and delivered an address describing the goals and practices of perinatal palliative care as being in keeping with the teachings of the (...) Roman Catholic Church and the pastoral care of families. His endorsement represents a new pastoral development, a renewed focus on supporting families and infants who are affected by genetic... (shrink)

Providing in-utero treatments to target specific conditions in the fetus is a relatively new approach in perinatal care, with the vast majority of these treatments being used off-label. The high degree of off-label medication use in the perinatal and neonatal settings raises concern for the safety of both the fetuses and expectant mothers. This report presents two examples of intra-amniotic drug administration based on reported clinical cases. From the ethical framework of medical principlism, we examine the competing ethical (...) duties of autonomy, beneficence, and non-maleficence in this setting. We then lay out three fundamental ethical principles for obtaining informed consent and maximizing clinical benefit. (shrink)

This paper engages in the ongoing dialog on "justice and the health care 'industry"'1 and addresses the question of whether market strategies are consistent with an ethical distribution of resources in health care. As it pertains to the development of perinatal services over the past twenty-five to thirty years in the United States, my short answer to this question is "no." Business organization and market-oriented strategies have contributed to the creation and extensive growth of perinatal intensive care centers (...) located in large medical centers. This growth, which has aggravated the neglect of primary care, has been incongruent with known health needs and represents an ethically questionable distribution of resources. (shrink)

Volume 24, Issue 10, October 2024, Page 117-119.

In this article, the theme of introductory engagement is developed through the conversational interviews and participatory observations I carried out with perinatal nurses and birthing women in the context of a feminist phenomenological methodology. Positioned against the landscape of hierarchical health care practices embedded with power dynamics and disembodied practices, this research explored the ways in which perinatal nurses related to birthing women in the context of relational care. The focus of attention in this article is to describe (...) the theme of introductory engagement by way of a storied phenomenological text. (shrink)

Advocacy has been positioned as an ideal within the practice of nursing, with national guidelines and professional standards obliging nurses to respect patients' autonomous choices and to act as their advocates. However, the meaning of advocacy and autonomy is not well defined or understood, leading to uncertainty regarding what is required, expected and feasible for nurses in clinical practice. In this article, a feminist ethics perspective is used to examine how moral responsibilities are enacted in the perinatal nurse—patient relationship (...) and to explore the interaction between the various threads that influence, and are in turn affected by, this relationship. This perspective allows for consideration of contextual and relational factors that impact on the way perinatal nursing care is given and received, and provides a framework for exploring the ways in which patient autonomy, advocacy and choice are experienced by childbearing women and their nurses during labour and birth. (shrink)

Domestic violence is one of the most common forms of violence against women. Domestic violence during pregnancy is associated with adverse perinatal and maternal outcomes. We aimed to assess whether domestic violence was associated with mode of delivery, low birthweight and preterm birth in two sites in Nepal. In this prospective cohort study we consecutively recruited 2004 pregnant women during antenatal care at two hospitals between June 2015 and September 2016. The Abuse Assessment Screen was used to assess fear (...) and violence. Having ever experienced either fear or violence was defined as any domestic violence. Obstetric outcomes were obtained from hospital records for 1381 women, selecting singleton pregnancies only. Mode of delivery was assessed as birth by cesarean section or not. A birthweight of less than 2500 g was defined as low birthweight and preterm birth as birth before completion of 37 weeks gestation. Descriptive and multiple logistic regression analyses were performed to assess associations. Twenty percent of the women reported any domestic violence. Among all 1381 women, 37.6% gave birth by cesarean section. Of those women who delivered by cesarean section, 84.7% had an emergency cesarean section. Less than 10% of the babies were born prematurely and 13.5% were born with low birthweight. We found no significant association between exposure to any domestic violence during pregnancy and risk of a low birthweight baby or birth by cesarean section. However, having experienced both violence and fear was significantly associated with giving birth to a preterm infant [aOR 2.33 ]. Domestic violence is common in Nepal. This is a potential risk factor for severe morbidity and mortality in newborns. We found that the risk of having a preterm baby was higher for pregnant women who experienced both fear and violence. This should be recognized by the health sector. In this study, no significant differences were found in the rate of cesarean section nor low birthweight for women who had experienced any domestic violence compared to those who did not. (shrink)

This article examines the barriers to quality health care for transgender, nonbinary, and gender-expansive people (TGE) who become pregnant and give birth, identifying three central themes that emerge from the literature. These insights suggest that significant reform will be necessary to ensure access to safe, appropriate, gender-affirming care for childbearing TGE people. After illustrating the need for systemic changes that untether rigid gender norms from the provision of perinatal care, the article proposes that the Midwives Model of Care offers (...) a set of values and clinical practices that are well-suited to meet the needs of many TGE patients during pregnancy and childbirth and which should be incorporated into the healthcare system more broadly. (shrink)

Prenatal screening can lead to the detection and diagnosis of significantly life-limiting conditions affecting the unborn child. Recognizing the difficulties facing parents who decide to continue the pregnancy, some have proposed perinatal hospice as a new modality of care. Although the medical literature has begun to devote significant attention to these practices, systematic philosophical reflection on perinatal hospice has been relatively limited. Drawing on Alasdair MacIntyre’s account of the virtues of acknowledged dependence, I contend that perinatal hospice (...) manifests and facilitates virtues essential to living well with human dependency and vulnerability. For this reason, perinatal hospice deserves broad support within society. (shrink)

Perinatal palliative and hospice care (hereafter, perinatal hospice) is a novel approach to addressing a family’s varied needs following an adverse in utero diagnosis. Christian defenses of perinatal hospice tend to focus on its role as an ethical alternative to abortion. Although these analyses are important, they do not provide adequate grounds to characterize the wide range of goods realized through this compassionate form of care. This essay draws on an analysis of the Christian virtue of humility (...) to highlight the ways a Christian virtue-based defense of perinatal hospice can account for these goods. I argue that humility can play an important facilitating role in helping Christian physicians to meet the needs of families in profoundly difficult circumstances. (shrink)

Perinatal hospice is a novel form of care for an unborn child who has been diagnosed with a significantly life-limiting condition. In this book, Aaron D. Cobb develops a virtue-based defense of the value of perinatal hospice. He characterizes its promotion and provision as a common project of individuals, local communities, and institutions working together to provide exemplary care. Engaging with important themes from the work of Alasdair MacIntyre and Robert Adams, he shows how perinatal hospice manifests (...) virtues crucial to meeting the needs of families in these difficult circumstances. As a work of applied virtue ethics, this book has important normative, social, and political implications for the creation and development of structured programs of care. It grounds the view that communities ought to devote resources to ensure that these programs are widely available and to develop social structures that promote awareness of and accessibility to these forms of care. A Virtue-Based Defense of Perinatal Hospice will be of interest to philosophers working in bioethics and applied virtue ethics, as well as scholars in the fields of neonatology, nursing, palliative and hospice care, and counseling who are interested in the study of perinatal hospice. (shrink)

Objective: To explore the ways in which health care practitioners working within the morally contested area of prenatal screening balance their professional and private moral values.Design: Qualitative study incorporating semistructured interviews with health practitioners followed by multidisciplinary discussion groups led by a health care ethicist.Setting: Inner city teaching hospital and district general hospital situated in South East England.Participants: Seventy practitioners whose work relates directly or indirectly to perinatal care.Results: Practitioners managed the interface between their professional and private moral values (...) in a variety of ways. Two key categories emerged: “tolerators”, and “facilitators”. The majority of practitioners fell into the “facilitator” category. Many “facilitators” felt comfortable with the prevailing ethos within their unit, and appeared unlikely to feel challenged unless the ethos was radically challenged. For others, the separation of personal and professional moral values was a daily struggle. In the “tolerator” group, some practitioners sought to influence the service offered directly, whereas others placed limits on how they themselves would contribute to practices they considered immoral.Conclusions: The “official” commitment to non-directiveness does not encourage open debate between professionals working in morally contested fields. It is important that practical means can be found to support practitioners and encourage debate. Otherwise, it is argued, these fields may come to be staffed by people with homogeneous moral views. This lack of diversity could lead to a lack of critical analysis and debate among staff about the ethos and standards of care within their unit. (shrink)

Van der Pijl et al outline data suggesting an alarmingly high incidence of violation of the bodily integrity of patients in labour, including episiotomies performed without patients’ consent, or over their explicit objection.1 Similar data have been reported from the USA and Canada.2 The authors appropriately conclude that explicit consent is required at the time of all invasive obstetrical procedures, including episiotomy. Commonsense adjustments to the duration and detail of consent under conditions of clinical urgency are appropriate and should be (...) familiar to any clinician involved in perinatal care, as well as non-obstetric proceduralists caring for acutely ill patients. However, complete omission of consent for any of these procedures is both disrespectful to patients’ autonomy and strongly associated with morbidity from birth-related psychosocial trauma.3–5 The true incidence of obstetrical procedures performed without patients’ consent is difficult to determine for multiple reasons, including sample selection, recall bias and patients’ reluctance to reengage with traumatic experiences; however, …. (shrink)

This essay explores the relationship between the modern era’s impulse toward control and the practices of family planning and disability-selective abortion. Drawing from experiences as a pediatric palliative care physician working within a busy fetal care program, as well as the social theory of sociologist Hartmut Rosa, the author argues that there is an unresolved cultural and professional conflict within perinatal medicine between maximizing control of the future and maximizing a culture of anti-ableism.

Ethically complex and challenging cases confront health care professionals in neonatal‐perinatal medicine more often than in most other subspecialties in medicine. Neonatologists regularly encounter situations where crucial life‐or‐death decisions need to be made in the best interest of an infant and its family. While physicians and their professional societies seem to dictate this best interest standard by weighing the risk of mortality and morbidities, parents may have other perspectives to be considered.Our review of programs for teaching ethics in Canadian (...) neonatal‐perinatal residency programs has revealed that 90 percent of them incorporated formal and informal medical ethics education, meeting the Royal College of Physician and Surgeons of Canada requirements, but that the teaching strategies, topics covered, and time devoted to teaching ethics are not standardized. Lectures and case presentations—the pedagogic strategy used by most programs—are not ideal for teaching communication skills. We propose, therefore, a holistic approach to teaching and training that imparts (1) a traditional understanding of ethical theory and reasoning, (2) advanced skills in communication and counseling, and (3) a disposition to engage in self‐reflection and to be aware of the emotional and spiritual dimensions of neonatal‐perinatal medicine. (shrink)

Poor pregnancy outcomes and inequalities in these outcomes remain a major challenge, even in prosperous societies that have high-quality health care and public health policy in place. In this article, we propose that justice demands the improvement of what we call the ‘health agency’ of parents-to-be as part of a response to these poor outcomes. We take health agency to have three aspects: the capacity to form health-goals one has reason to value, the control one perceives to have over achieving (...) those health-goals and the freedom one has to achieve those health-goals. We will moreover argue that this demand of justice can be best based on a perfectionist rather than neutralist method of justification. Subsequently, we will argue that perfectionist policy may be paternalistic but not wrongfully paternalistic. This leads us to conclude that perfectionism should be adopted to inform and justify public health policy that is aimed at improving health agency in general and counteracting poor pregnancy outcomes and inequalities in perinatal health outcomes in particular. (shrink)

For those of us gathered expectantly in the frescoed 16th-century Clementine Hall in Vatican City on a brilliant spring morning in May 2019, it was a profound moment when Pope Francis spoke the words “perinatal hospice”. I wish all the medical professionals who have pioneered and developed this care over the last 25 years could have been in that majestic hall with us. Their cumulative work—along with the poignant stories of many families—is inspiring people around the globe and helping (...) more people than they may ever know. The hour-long private papal audience for conference attendees was the culmination of a three-day conference titled “Yes to Life! Caring for the Precious Gift of... (shrink)

BackgroundCarefully planned research is critical to developing policies and interventions that counter physical, psychological and social challenges faced by young people living with HIV/aids, without increasing burdens. Such studies, however, must navigate a ‘vulnerability paradox’, since including potentially vulnerable groups also risks unintentionally worsening their situation. Through embedded social science research, linked to a cohort study involving Adolescents Living with HIV/aids (ALH) in Kenya, we develop an account of researchers’ responsibilities towards young people, incorporating concepts of vulnerability, resilience, and agency (...) as ‘interacting layers’.MethodsUsing a qualitative, iterative approach across three linked data collection phases including interviews, group discussions, observations and a participatory workshop, we explored stakeholders’ perspectives on vulnerability and resilience of young people living with HIV/aids, in relation to home and community, school, health care and health research participation. A total of 62 policy, provider, research, and community-based stakeholders were involved, including 27 ALH participating in a longitudinal cohort study. Data analysis drew on a Framework Analysis approach; ethical analysis adapts Luna’s layered account of vulnerability.ResultsALH experienced forms of vulnerability and resilience in their daily lives in which socioeconomic context, institutional policies, organisational systems and interpersonal relations were key, interrelated influences. Anticipated and experienced forms of stigma and discrimination in schools, health clinics and communities were linked to actions undermining ART adherence, worsening physical and mental health, and poor educational outcomes, indicating cascading forms of vulnerability, resulting in worsened vulnerabilities. Positive inputs within and across sectors could build resilience, improve outcomes, and support positive research experiences.ConclusionsThe most serious forms of vulnerability faced by ALH in the cohort study were related to structural, inter-sectoral influences, unrelated to study participation and underscored by constraints to their agency. Vulnerabilities, including cascading forms, were potentially responsive to policy-based and interpersonal actions. Stakeholder engagement supported cohort design and implementation, building privacy, stakeholder understanding, interpersonal relations and ancillary care policies. Structural forms of vulnerability underscore researchers’ responsibilities to work within multi-sectoral partnerships to plan and implement studies involving ALH, share findings in a timely way and contribute to policies addressing known causes of vulnerabilities. (shrink)

BackgroundPerinatal bereavement is an event that greatly impacts the emotional, psychological, and psychosocial aspects of those who want to have a child.ObjectivesSince there are few studies on the psychological impact of the COVID-19 pandemic on couples grieving for perinatal loss, this research aimed to survey this experience.ParticipantsBetween 2020 and 2021, in Italian provinces highly affected by the COVID-19 pandemic, 21 parents participated: 16 mothers and 5 fathers, among which there were 4 couples.MethodsA mixed-method design was used through self-report questionnaires (...) and in-depth interviews. Accompanied by a sociodemographic form, the following questionnaires were administered: Prolonged Grief-13, the Parental Assessment of Paternal Affectivity, the Parental Assessment of Maternal Affectivity, the Dyadic Adjustment Scale short version, the Daily Spiritual Experiences Scale, and the Impact of Event Scale-Revised. The texts obtained through the in-depth interviews underwent thematic analysis.ResultsFifty per cent of participants suffered from Post-Traumatic Stress Disorders symptoms and 20% suffered from relational dyadic stress. Four areas of thematic prevalence emerged: psychological complexity of bereavement, the impact of the COVID-19, disenfranchisement vs. support, and spirituality and contact with the lost child. Participants interpreted their distress as related to inadequate access to healthcare services, and perceiving the pandemic restrictions to be responsible for less support and lower quality of care. Furthermore, they needed psychological help, and most of them were unable to access this service. Spirituality/religiosity did not help, while contact with the fetus and burial did.ConclusionIt is important to implement psychological services in obstetrics departments to offer adequate support, even in pandemic situations. (shrink)

A woman, perhaps a couple, learn they are pregnant. Perhaps she is elated for this desired news. Perhaps she is also overwhelmed or scared by the daunting task of parenthood ahead. Then, a prenatal screening reveals something worrisome about the fetus. A tumbling series of appointments and exams confirm the concerning findings. As Pope Francis notes, this news “changes the experience of pregnancy.” In place of optimistic wonderment for the future, parents now have new worries about whether their baby will (...) have a shortened life, experience suffering, or face many medical interventions in order to survive. I am a pediatric and perinatal palliative care doctor. I am often called to meet these wounded yet resilient... (shrink)

Aims and objectives. Participant narratives from a feminist and queer phe- nomenological study aim to broaden current understandings of trauma. Examin- ing structural marginalisation within perinatal care relationships provides insights into the impact of dominant models of care on queer birthing women. More specifically, validation of queer experience as a key finding from the study offers trauma-informed strategies that reconstruct formerly disempowering perinatal relationships. Background. Heteronormativity governs birthing spaces and presents considerable challenges for queer birthing women who may (...) also have an increased risk of trauma due to structurally marginalising processes that create and maintain socially constructed differences. Design. Analysis of the qualitative data was guided by feminist and queer phe- nomenology. This was well suited to understanding queer women’s storied narra- tives of trauma, including disempowering processes of structural marginalisation. Methods. Semistructured and conversational interviews were conducted with a purposeful sample of thirteen queer-identified women who had experiences of birthing in rural Nova Scotia, Canada. Results. Validation was identified as meaningful for queer women in the context of perinatal care in rural Nova Scotia. Offering new perspectives on traditional models of assessment provide strategies to create a context of care that recon- structs the birthing space insofar as women at risk do not have to come out as queer in opposition to the expectation of heterosexuality. Conclusions. Normative practices were found to further the effects of structural marginalisation suggesting that perinatal care providers, including nurses, can challenge dominant models of care and reconstruct the relationality between queer women and formerly disempowering expectations of heteronormativity that govern birthing spaces. Relevance to clinical practice. New trauma-informed assessment strategies recon- struct the relationality within historically disempowering perinatal relationships through potentiating difference which avoids retraumatising women with re- experiencing the process of coming out as queer in opposition to the expectation of heterosexuality. (shrink)

An understanding of autonomy has important significance in North American health care. Although a respect for autonomy is necessary to protect the self-determination and agency of birthing women in hospital settings, I suggest that enactments of autonomy that are independent of relationships offer only an incomplete interpretation of such a vital concept. In this article I explore an understanding of autonomy situated within the context of a relational birthing narrative. In so doing, autonomy becomes conceptualized as contextual and concrete, giving (...) rise to an embodied view of the birthing woman. (shrink)

IntroductionThere is a paucity of clinical guidelines for the routine assessment of maladaptive reproductive grief reactions in outpatient primary care and OB-GYN settings in the United States. Because of the disenfranchised nature of perinatal grief reactions, many clinicians may be apt to miss or dismiss a grief reaction that was not identified in the perinatal period. A significant number of those experiencing a reproductive loss exhibit signs of anxiety, depression, or post-traumatic stress disorder. Reproductive losses are typically screened (...) for and recorded numerically as part of a woman’s well-visit intake, yet this process often fails to identify patients emotionally troubled by a prior pregnancy loss.Materials and MethodsA summative content analysis of 164 recent website blogs from female participants who self-reported having experienced a miscarriage or abortion in their lifetime was conducted. The narratives were reviewed for details regarding the time span between the pregnancy loss and the composition of the blog post. The stories were analyzed for subsequent relationship problems and detrimental mental health conditions. Maladaptive reactions were contrasted for those that indicated a greater than 12 months’ time-lapse and those who had not.ResultsMore than a third of the women reported in the narrative that at least one year or more had passed since experiencing the miscarriage or abortion. For those women, the median time span between the loss and composing the blog was 4 years with a range of 47 years. Mental health conditions attributed to the reproductive loss by those who reported longer bereavement times included subsequent relationship problems, substance misuse, depression, suicidal ideation, and PTSD. The percent of reported maladaptive issues was more than double for those who reported that a year or more had passed since the loss of the pregnancy.DiscussionGrief reactions following the loss of a pregnancy may be prolonged or delayed for several months which can contribute to adverse biopsychosocial outcomes. Recognition and treatment of maladaptive grief reactions following a pregnancy loss are critical. Screening methods should be enhanced for clinicians in medical office settings to help identify and expedite the appropriate mental health assistance. (shrink)

Numerous issues confront women's healthcare today, among them the medicalization of women's bodies, cosmetic genital surgery, violence against women, HIV, perinatal mental health disorders. This volume uniquely explores such difficult topics and others at the intersection of clinical practice, policy, and bioethics in women's health care through a feminist ethics lens. With in-depth discussions of issues in women's reproductive health, it also broadens scholarship by responding to a wider array of ethical challenges that many women experience in accessing health (...) care. Contributions touch on many themes previously tackled by feminist ethics, but in new, contemporary ways. Some chapters expand into new fields in the bioethics literature, such as the ethical issues related to the care of Indigenous women, uninsured refugees and immigrants, women engaged in sex work, and those with HIV at different life stages and perinatal mental health disorders. Authors seek to connect theory and practice with users of the health system by including women's voices in their research. Bringing to bear their experience in active clinical practice in medicine, nursing, and ethics, the authors contemplate new conceptual approaches to important issues in women's healthcare, and make ethical practice recommendations for those grappling with these issues. Topical and up-to-date, this book provides a valuable resource for physicians, nurses, clinical ethicists, and researchers working in some of the most critical areas of women's health and applied ethics today. (shrink)

Background Factors that could potentially act as facilitators and barriers to successful recruitment strategies in perinatal clinical trials are not well documented. The objective was to assess lay persons’ understanding of the informed consent for randomized clinical trial in emergency obstetric and newborn care. Methods This was a qualitative study conducted among survivors of severe obstetric complications who were attending the post-natal clinic of Kawempe National Referral Hospital, Uganda, 6–8 weeks after surviving severe obstetric complications during pregnancy or childbirth. (...) The study that involved 18 in-depth interviews was conducted from June 1, 2019 to July 6, 2019. The issues explored included perceptions of the purpose and necessity to conduct such research how research-related information would be disclosed, and what could be the potential benefits and risks of participation. The data was analyzed by thematic analysis. Results Respondents felt that research was necessary to investigate the cause, prevention or complications of an illness, especially as much was known about some pregnancy and newborn complications. Most believed that the emergency contexts affects whether and what prospective participants may understand if information about research was disclosed. Whereas they did not see the value of procedures like randomization, they felt that if these and any other procedures necessary should be done transparently and fairly. The decisions to participate would significantly be influenced by possibility of risk to the unborn baby or the newborn. Solidarity was an important influence on decision-making. Conclusions Respondents valued participation in RCTs in emergency obstetric and newborn care. However, they expressed concerns and valued openness, transparency and accountability with regard to how clinical trials information is disclosed and the decision-making process for clinical trial participation. While autonomy and solidarity are contradictory values, they complement each other during decision-making for informed consent. (shrink)

Objectives To characterize the prevalence and content of pediatric triage policies.Methods We surveyed and solicited policies from U.S. hospitals with pediatric intensive care units. Policies were analyzed using qualitative methods and coded by 2 investigators.Results Thirty-four of 120 institutions (28%) responded. Twenty-five (74%) were freestanding children’s hospitals and 9 (26%) were hospitals within a hospital. Nine (26%) had approved policies, 9 (26%) had draft policies, 5 (14%) were developing policies, and 7 (20%) did not have policies. Nineteen (68%) institutions shared (...) their approved or draft policy. Eight (42%) of those policies included neonates. The polices identified 0 to 5 (median 2) factors to prioritize patients. The most common factors were short- (17, 90%) and long- (14, 74%) term predicted mortality. Pediatric scoring systems included Pediatric Logistic Organ Dysfunction-2 (12, 63%) and Score for Neonatal Acute Physiology and Perinatal Extensions-II (4, 21%). Thirteen (68%) policies described a formal algorithm. The most common tiebreakers were random/lottery (10, 71%) and life cycles (9, 64%). The majority (15, 79%) of policies specified the roles of triage team members and 13 (68%) precluded those participating in patient care from making triage decisions.Conclusions While many institutions still do not have pediatric triage policies, there appears to be a trend among those with policies to utilize a formal algorithm that focuses on short- and long-term predicted mortality and that incorporates age-appropriate scoring systems. Additional work is needed to expand access to pediatric-specific policies, to validate scoring systems, and to address health disparities. (shrink)

The design of medical knowledge-based computer systems requires effective interdisciplinary communication for the development of a community sharing common goals and a common language for design. Over the past 9 years the Perinatal Research Group, an interdisciplinary team of computer scientists, engineers and clinicians, have developed a prototype knowledge-based computer system to aid clinicians in the care of women in labour. The group were uncertain which approach to adopt to progress this system from a prototype to a useful clinical (...) tool to support decision making. A case study and activity theory analysis, of an existing clinical knowledge-based computer system in routine use, helped to resolve a number of communication and methodological issues that the design team encountered. Sharing of backgrounds and perspectives caused the design team to question previous assumptions and to explore alternative functions and roles for knowledge-based computer systems in maternity care. We are now undertaking a longitudinal case study and activity theory analysis of obstetric teams and women in labour to analyse the relationships between clinicians, patients and technology. This work will inform the development of our knowledge-based computer system to place the patient at the centre of the decision-making process. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Closing the Gaps in Pediatric HIV/AIDS Care, One Step at a TimeLisa V. Adams, Helga Naburi, Goodluck Lyatuu, Paul Palumbo, and C. Fordham von ReynFatuma's* doctors were completely perplexed. It was 2003 and she had returned to the DARDAR clinic in her hometown of Dar es Salaam, Tanzania three times that week with vague complaints of various pains and aches. Her doctors were considering whether these symptoms were due (...) to the initiation of her recent treatment with antiretroviral medications for her HIV infection or related to the last administration of the investigational tuberculosis (TB) vaccine that the DARDAR Health Study was evaluating. Fatuma's doctor, Dr. Lillian Mtei, consulted with Dartmouth's chief of Infectious Disease, Dr. Ford von Reyn, who happened to be in Dar that week on a site visit. Neither physician could determine the basis for her symptoms. Dr. Mtei returned to the exam room once more and this time emerged with the answer: Fatuma had just learned that her three year old daughter was HIV-infected, likely contracted from Fatuma during or shortly after she gave birth to her daughter. Fatuma believed that her HIV diagnosis was a death sentence for her daughter since antiretroviral therapy was not widely available for children.Dr. von Reyn, Dartmouth's lead clinical researcher in Africa and a father, knew too well the harsh reality of inequities in a resource-limited country. He turned to Dr. Mtei and said decidedly, "we need to do something about this."Thus the DARDAR Pediatric Program was born.Pediatric HIV: A Neglected DiseaseThe need for HIV treatment among children in Tanzania, as in most of sub-Saharan Africa, is compelling. At the end of 2009, approximately 160,000 children aged zero to fourteen in Tanzania were living with HIV (Joint United Nations Programme on HIV/AIDS [UNAIDS], 2011). Even with successful roll out of prevention of mother to child transmission programs in Tanzania, there were nearly 29,000 perinatal infections in 2009. As of December 2010, only 18% of these were enrolled in HIV treatment programs (UNAIDS, 2011; World Health Organization [WHO], 2011). Without antiretroviral therapy (ART), one-half of HIV-infected children will die before their second birthday. Since clinical research to determine efficacy and safety of new medical treatments is conducted almost exclusively in adults, provision of new medical treatments to [End Page 75] children always lags behind advances for adults. Furthermore, children are often underrepresented in programs for antiretroviral drugs for the following reasons: 1) they are not prioritized for care; 2) facilities lack infant diagnostic capabilities; 3) there is limited pediatric HIV training and consequently, a shortage of pediatric providers; and 4) pediatric antiretroviral formulations are frequently unavailable. The unacceptable delays in pediatric HIV drug development and treatment access led the international organization Drugs for Neglected Diseases initiative to publish an editorial in which they referred to pediatric HIV as a "neglected disease" (Lallemant, Chang, Cohen, & Pecoul, 2011).The Tip of the Iceberg: More than Just MedicinesWith a grant from the New York-based Foundation for the Treatment of Children with AIDS, the DARDAR Pediatric Program, a joint collaboration between Geisel School of Medicine at Dartmouth and Muhimbili University of Health and Allied Sciences, began seeing patients in May 2006. It was the first dedicated pediatric HIV Care and Treatment Center in Tanzania and operates in accordance with Tanzania's National AIDS Control Programme's guidance. Testing for both children and infants (the latter of which requires a more sophisticated assay) is available.The day the clinic opened we celebrated this collaborative effort that would provide HIV-infected children in Dar es Salaam access to antiretroviral treatment. One of our first patients was a six-year-old boy whose mother, like Fatuma, was a participant in our TB vaccine trial. She had been advised to bring her son to us for HIV screening. Her son looked healthy so she was surprised and understandably distraught when his test results indicated that not only was he HIV-infected, but his CD4 percentage was very low. His mother was reluctant to have him started on antiretrovirals given his general appearance and young age—and that he was... (shrink)

The outcome of very preterm infants is marked by the development of complications that can have an impact on the quality of life of the children and their families. The concept of quality of life and its evaluation in the long term raise semantic and ethical problems for French physicians in perinatal care. Our reflection aims to gain a better understanding of the representations surrounding quality of life in neonatal medicine.

Abortion is permitted in many jurisdictions after the age at which an infant is viable on the basis of intensive neonatal care techniques. Does this cause special concerns for those involved in perinatal care and termination of pregnancy services or is the overlap mainly an abstract issue fretted over by ethicists and academics? In order to explore this question, a group of clinicians involved in this area of care were interviewed and their interviews analysed using qualitative measures. The clinicians (...) concerned were exercised by the ethical issues and had various ways of resolving them which tended to reflect a gradualist, multifaceted and, to some extent, particularist approach to ethical decision-making in relation to the edges of human life. The ways in which those strands of ethical thought are instanced in the interview material are reported and discussed. (shrink)

This volume brings together original essays by many of the best and most prominent figures in the emerging field of biomedical ethics and presents them in a dialogue that significantly updates their earlier work. Focusing on the moral dilemmas that recent medical advances have created at both ends of the life course, the contributors discuss such issues as patient autonomy, hospital policies of risk-management, new developments in the abortion debate, genetic counseling and perinatal care, euthanasia and physician-assisted suicide, testing (...) and treatment policies for HIV infection, and fairness in allocating health care and donated organs. (shrink)

This article examines the ethical validity of using viability as the cutoff point for abortion in the Netherlands, in view of potential changes to the Dutch perinatal care guideline. According to the Dutch Penal Code, abortion is permitted until viability: the point at which a fetus can survive outside the womb with technological assistance. Since the law was enacted in 1984, viability has been set at 24 weeks gestational age. Currently, in the Netherlands, the treatment limit for extreme prematurity (...) is also set at 24 weeks. The potential revision of the guideline could lower this threshold. Such a change could have implications for abortion in the Netherlands. We critically evaluate the use of viability within the Dutch context and offer recommendations for modifying the legal framework concerning abortion. We conclude that relying on any interpretation of viability is morally problematic for abortion regulation, as it is too indeterminate a concept to establish a threshold in a morally relevant way. (shrink)

Abortion for life-limiting foetal anomaly is often an intensely painful choice for the parents; though widely offered and supported, it is surprisingly difficult to defend in ethical terms. Abortion on this ground is sometimes defended as foetal euthanasia but has features which sharply differentiate it from standard non-voluntary euthanasia, not least the fact that any suffering otherwise anticipated for the child may be neither severe nor prolonged. Such abortions may be said to reduce suffering for the family including siblings – (...) a consideration rarely stated so explicitly in defences of postnatal euthanasia – or for the woman who must in any case face the eventual loss of her baby, and for whom the abortion is seen as therapeutic in minimising pain. Finally, the abortion may be said to constitute the cessation of morally optional life support on the part of the woman, and/or to be a ‘social’ choice she is entitled to make, whether or not this in fact promotes her interests or those of her child. These defences need honest exploration: the intense parental suffering caused by the choice to end an often much-wanted pregnancy should not preclude but rather encourage the question whether this choice can indeed be ethically proposed to couples, especially compared with the neonatal palliative care (‘perinatal hospice’) approach so well received by parents who experience it. (shrink)

Background Conducting clinical trials with pre-term or sick infants is important if care for this population is to be underpinned by sound evidence. Yet, approaching the parents of these infants at such a difficult time raises challenges to obtaining valid informed consent for such research. In this study, we asked, What light does the analytical literature cast on an ethically defensible approach to obtaining informed consent in perinatal clinical trials? -/- Methods In a systematic search, we identified 30 studies. (...) We began our analysis by applying philosophical frameworks, which were then refined as concepts emerged from the analytical studies, to present a coherent picture of a broad literature. -/- Results Between them, the studies addressed four themes. The first three were the ethical basis for parental informed consent for neonatal and/or perinatal research, the validity of parental consent in this context, and the range of possible options in methods for gaining consent. The last was the issue of risk and the possibility of a double-standard or asymmetry in the current approaches to the requirement for consent for research and consent for clinical treatment. -/- Conclusions In addressing these issues, the analysed studies showed that, whilst there are a variety of possible defences for seeking parental ‘consent’ to neonatal and/or perinatal clinical trials, these are all consistent with the strongly and widely held view that it is important that parents do give (or decline) consent for such research. So far as the method of obtaining consent is concerned, none of the existing consent processes reviewed by the research is satisfactory, and there are philosophical reasons for supposing that at least some parents will fail to give valid consent in a neonatal context. Furthermore, in giving parental ‘consent’ in a perinatal context, parents are authorising infant participation, not giving ‘proxy consent’. Finally, there are reasons for giving weight to both parental ‘consent’ and the infant’s best interests in both research and clinical treatment. However, there are also reasons to treat these factors differently in the two contexts, and this may be partly due to the differing relevance of risk in each case. A significant gap is the lack of any detailed discussion of a process of emergency and/or urgent ‘assent’, in which parents assent or refuse their baby’s participation as best they can during the emergency and later give full consent to continuing participation and follow-up. (shrink)

Background A significant number of women experience childbirth as traumatic. These experiences are often characterised by a loss of control coupled with a perceived lack of support and inadequate communication with health care professionals. Little is known about the choices women make in subsequent pregnancy(s) and birth(s), or why they make these choices. This study aimed to understand these choices and explore the reasons behind them. Methods A longitudinal Grounded Theory Methods (GTM) study involving 9 women was conducted. Over half (...) of the participants had a formal diagnosis of PTSD and/or PND related to the previous birth. Interviews were carried out at 3 timepoints perinatally. These findings are from the first interviews at 12-20 weeks. Results From the first days of pregnancy, this cohort of women were focused on concerns that this birth would be a repeated traumatic experience. The women were deliberately searching out and analysing information about their choices in this pregnancy and birth, and making plans which had two aims; firstly to avoid a repeat of their previous birth experience, and secondly to avoid a loss of control to other people during the birth. The women considered a range of birth choices, from elective caesareans to freebirth. Some women felt well supported by those around them, including health care professionals, partners, friends and family. Others did not, and were anticipating conflict in trying to assert their birth choices. Many early relationships with health care professionals were characterised by fear and mistrust. Discussion Women who have previously experienced a traumatic birth become pregnant again, have a strong desire to avoid a repeat experience and to feel in control of their birth choices. Access to robust information appears to help reduce uncertainty and arm women in their discussions with professionals. Similarly making plans and seeking to have them agreed with health care professionals at an early stage is used a way to reduce the risk of having a further traumatic experience. Implications for practice include supporting women in formulating and confirming pregnancy and birth plans at an early stage to reduce uncertainty and foster a sense of control. (shrink)

Celebrated for disproving the traditional view that lack of oxygen at birth (perinatal asphyxia) contributes significantly to cerebral palsy, a 1986 New England Journal of Medicine article by Karin Nelson and Jonas Ellenberg engineered a new consensus in the medical community: that lack of oxygen at birth rarely causes cerebral palsy. We demonstrate that the article's central argument relies on straightforwardly fallacious statistical reasoning, and we discuss significant implications -- e.g. how carefully fetuses are monitored during labor and delivery, (...) expert testimony in malpractice cases, and public policy decisions. (shrink)

Recent animal research suggests that it may soon be possible to support the human fetus in an artificial uterine environment for part of a pregnancy. A technique of extending gestation in this way (“ectogestation”) could be offered to parents of extremely premature infants (EPIs) to improve outcomes for their child. The use of artificial uteruses for ectogestation could generate ethical questions because of the technology’s potential impact on the point of “viability”—loosely defined as the stage of pregnancy beyond which the (...) fetus may survive external to the womb. Several medical decisions during the perinatal period are based on the gestation at which infants are considered viable, for example decisions about newborn resuscitation and abortion, and ectogestation has the potential to impact on these. Despite these possible implications, there is little existing evidence or analysis of how this technology would affect medical practice. In this paper, we combine empirical data with ethical analysis. We report a survey of 91 practicing Australian obstetricians and neonatologists; we aimed to assess their conceptual understanding of “viability,” and what ethical consequences they envisage arising from improved survival of EPIs. We also assess what the ethical implications of extending gestation should be for newborn and obstetric care. We analyze the concept of viability and argue that while ectogestation might have implications for the permissibility of neonatal life‐prolonging treatment at extremely early gestation, it should not necessarily have implications for abortion policy. We compare our ethical findings with the results of the survey. (shrink)

In clinical practice, and in the medical literature, severe congenital malformations such as trisomy 18, anencephaly, and renal agenesis are frequently referred to as ‘lethal’ or as ‘incompatible with life’. However, there is no agreement about a definition of lethal malformations, nor which conditions should be included in this category. Review of outcomes for malformations commonly designated ‘lethal’ reveals that prolonged survival is possible, even if rare. This article analyses the concept of lethal malformations and compares it to the problematic (...) concept of ‘futility’. We recommend avoiding the term ‘lethal’ and suggest that counseling should focus on salient prognostic features instead. For conditions with a high chance of early death or profound impairment in survivors despite treatment, perinatal and neonatal palliative care would be ethical. However, active obstetric and neonatal management, if desired, may also sometimes be appropriate. (shrink)