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

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

Revising ruling discourses: The griefwork evidence-to-practice gap and the mental health workforce.

Elisabeth Kübler-Ross' pioneering work focused on dying, yet some clinicians persist in prescribing it as a path through grief. We surveyed 964 mental health clinicians who completed a five-section mixed methods survey: two sections assessed knowledge with multiple choice questions and a case study to assess clinicians' knowledge-base and approach to grief/loss in practice. Analysis of four items related to Kübler-Ross' model and 66/962 case studies indicates ongoing use of "stages" and Kübler-Ross' model. Only 330 (34.2%) of the clinicians were deemed knowledgeable; 462 (47.9%) were questionable; and 172 (17.9%) were misinformed, continuing to use Kübler-Ross' stage theory for grief.

Medically high-risk pregnancy: Women's perceptions of their relationships with health care providers.

The purpose of this article is to examine women's perceptions of the patient-provider relationship in the context of medically high-risk pregnancy (MHRP). Sixteen in-depth interviews were conducted with women hospitalized for MHRP on a maternal-fetal medical unit in the US. Tenets of phenomenology guided the data analysis. We found that beyond normative stress related to managing physical aspects of MHRP, women reported added emotional stressors associated with navigating the fragmented health care environment. This study suggests that improved care coordination and systematic integration of psychosocial professionals within the perinatal interdisciplinary health care team are vital to reduce care-related stressors on this vulnerable patient group.

A phenomenology of informal caregiving for HIV/AIDS in India: Exploring women's search for authoritative knowledge, self-efficacy and resilience.

Women provide informal caregiving across the world and are often expected to provide care even when ailing themselves. We explore the lived experience of 33 impoverished married Indian women living with HIV and caring for their husbands and/or children living with HIV. Drawing on concepts of authoritative knowledge (AK), self-efficacy and resilience, we found a trajectory that reveals barriers to accessing care, yet we also found that women developed strengths and resiliency. Women gather information, develop "environ-info," and deliberatively weigh AK from health workers, family/friends' advice, and their own experiences. Over multiple iterations of this process, they build self-reliance and resilience.

ON BEING MOTHER AND PATIENT: DIALECTICAL STRUGGLES DURING MEDICALLY HIGH-RISK PREGNANCY.

Medically high-risk pregnancy (MHRP) affects 3 to 10% (diagnosis-dependent) of pregnant women in the United States (National Institute of Child Health Development, 2015), threatening maternal and fetal well-being. Although mothers' prenatal distress and mother-infant attachment after birth have been quantitatively researched, little research has examined women's lived experiences of MHRP in the United States. We examined 16 women's experiences of MHRP during hospitalization at an urban, Northeastern U.S. hospital using an interpretive phenomenological approach. Our qualitative findings provide new understanding of how women expend tremendous energy simultaneously navigating new roles of mother and patient. While negotiating these roles, they experienced dialectical struggles and uncertainty relating to emotion management, locus of control, appraisals of self/others, and relational self. Women managed these conflicts within the contexts of their emerging maternal identity, patient-provider relationships, and social relationships. Women struggled as they managed emotion, determined their level of responsibility for fetal outcomes, appraised others and themselves, and worried about how they were perceived. This amplified distress and contributed to women's emotional exhaustion, sense of being overwhelmed, and stress burden. New explication of these energy-depleting dynamic processes underlying women's experiences of MHRP and their impact on the future mother-infant relationship is considered, and strategies for psychosocial support are identified.

Balancing Genetics (Science) and Counseling (Art) in Prenatal Chromosomal Microarray Testing.

Genetic counselors frequently are called upon to assist patients in understanding the implications of prenatal testing information for their pregnancies and their family's lives. The introduction of highly sensitive testing such as chromosomal microarray has generated additional kinds of uncertainty into the prenatal period. Counselors may feel uncomfortable or inadequately prepared to engage in discussions with prospective parents who are faced with making critical, and timely, decisions about a pregnancy based on uncertain information. As highly sensitive prenatal testing becomes routine in prenatal care, counselors may be in search of approaches to prenatal counseling, as well as specific skills to approach, engage with, and help families find resolution in such challenging circumstances. To assist genetic counselors, we describe practice skills and provide language for approaching conversations with prospective parents. When clinicians regularly provide care to patients and families making life-altering decisions under conditions of significant uncertainty, discomfort is common and compassion fatigue is likely. We make recommendations directly to the genetic counselor working in reproductive and perinatal settings to enhance training and self-care and to decrease discomfort in balancing the scientific- and art- demands of genetic counseling.

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

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

Counseling pregnant people after previous termination of pregnancy for fetal anomaly (TOPFA): the double RAINBOW approach.

BACKGROUND AND OBJECTIVES: Pregnancy loss is exceptionally common, yet there exist few interventions for clinical providers to assist parents who are expecting again. Perhaps even less prevalent are practice models for parents who have terminated a pregnancy due to fetal anomaly (TOPFA). In this article, we present the "Double Rainbow" acronym, which provides evidence-supported guidance for counseling people experiencing a subsequent pregnancy after TOPFA. DESIGN AND METHODS: Using prompts of: Remember; Rehearse & Anticipate; Attach & Internalize; Interrogate decision; Neutralize; Normalize; Bond; Breathe & Observe; Optimize health; Weave and Whole story, we tie intervention techniques to evidence-based treatments and clinical practice examples. RESULTS: Filling a gap for guidance for effective intervention with people during subsequent pregnancies after termination of pregnancy due to fetal anomaly, we aim to improve such treatment while also encouraging evaluation of the approach, encouraging evaluation of its use with broader populations. CONCLUSIONS: The double RAINBOW approach weaves together evidence-based therapies while also attending to the work of distinguishing past losses and promoting parental attachment and caregiving systems in clients who have terminated a pregnancy due to fetal anomaly.

"There is Just a Different Energy": Changes in the Therapeutic Relationship with the Telehealth Transition.

The therapeutic relationship (TR), including its therapeutic frame, is the foundation of the therapeutic endeavor. In response to the COVID-19 pandemic and the rapid transition to videoconferencing for therapeutic encounters, we employed a cross-sectional exploratory survey with 1490 respondents to understand how practitioners adapted to the changes. In this secondary analysis focused on the TR, we analyze the clinicians' (N = 448) spontaneous narratives about facets of the TR. Temporally, we focused on how these adaptations occurred during the initial part of the pandemic before vaccination was available and while the TR was still adapting to teletherapy videoconferencing under the duress of pandemic crises. We find three broad themes: (1) It is a "much more remote relationship"; (2) The "connection…remains surprisingly strong"; and (3) It is "energetically taxing." Each reflects clinicians' views of the TR as altered, but surprisingly resilient. Although grateful for the safety of virtual therapeutic encounters, clinicians mourned the loss of an embodied encounter, experienced depletion of energy beyond Zoom fatigue, and nonetheless recognized their clients' and their own abilities to adapt.

Authoritative knowledge, the technological imperative and women's responses to prenatal diagnostic technologies.

Theories about authoritative knowledge (AK) and the technological imperative have received varying levels of interest in anthropological, feminist and science and technology studies. Although the anthropological literature abounds with empirical considerations of authoritative knowledge, few have considered both theories through an empirical, inductive lens. Data extracted from an earlier study of 30 women's responses to termination for fetal anomaly are reanalyzed to consider the women's views of, and responses to, prenatal diagnostic technologies (PNDTs). Findings indicate that a small minority embrace the societal portrayal of technology as univalently positive, while the majority have nuanced and ambivalent responses to the use of PNDTs. Further, the interface of authoritative knowledge and the technological imperative suggests that AK derives not only from medical provider status and technology use, but also from the adequacy and trustworthiness of the information. The issue of timing and uncertainty of the information also are interrogated for their impact on women's lives and what that can illuminate about the theories of AK and the technological imperative.

What do women want? Experiences and reflections of women after prenatal diagnosis and termination for anomaly.

It is difficult to hear the voices of women describing their experiences of perinatal health care in the United States. This article reports results from interviews with 30 women about their experience of pregnancy termination for fetal anomaly (TFA) and their encounters with the medical system during the diagnosis through the aftermath of termination process. The ways researchers inadvertently silence women's voices are analyzed. Themes emerged from the interviews, including the role of preparedness, access and barriers to care, and the importance of empathic compassion by the provider. Additionally, women give relatively unprocessed advice and feedback to the varied disciplines of the medical care team.

Actions and Uncertainty: How Prenatally Diagnosed Variants of Uncertain Significance Become Actionable.

The development of genomic technologies has seemed almost magical. Excitement about it, both in medicine and among the public, stems from the belief that genomic techniques will illuminate the causes of health and disease, will lead to effective interventions for both rare and common genetic conditions, and will inform reproductive decision-making. Novel diagnostic tools, however, are often deployed before targeted therapies are developed, tested, or available and before their psychosocial implications are explored. Newer technologies such as prenatal whole exome screening are seen as offering "decisional autonomy" to expectant parents, although such technologies identify information about genetic sequencing that may not have clear meaning. The "therapeutic gap" between the ability to conduct genetic sequencing and the ability to fully understand what the test results mean, much less what treatments to offer, leaves families with complex and unclear information they cannot act upon with confidence during pregnancy. In this essay, we will consider the psychosocial and ethical implications of such assumptions-and of the uncertain information produced by these technologies-for individuals and families and for societal aspects such as medical service usage and demographic inequities.

"I'm not a saint": burden assessment as an unrecognized factor in prenatal decision making.

Prenatal testing is widely utilized, yet few studies have explored decision-making processes about diagnosis from the pregnant woman's standpoint. This qualitative, exploratory study reveals a factor not accounted for in prior research geared toward associations between demographic categories and decisions. The 30 women in this study demonstrated a three-part decisional trajectory that included an effort to collect information about the challenges a potential child with their particular diagnosis might experience. They then assessed their social context, familial supports, and resilience as a couple. A final yet crucial step was an assessment of the woman's own capacity to provide this level of care within her unique context. Few genetics teams have a member with biopsychosocial expertise and time who can help the woman/couple reflect on the situated context of the decision and its impact. Better care strategies to support women and couples through this experience are warranted.

'Drug adherence levels are falling down again': health worker perceptions of women's service utilization before and after integration of HIV/AIDS services into general care in India.

Integrated models of HIV/AIDS service delivery are believed to have advantages over stand-alone models of care from health planners' and providers' perspectives. Integration models differ, yet there is little information about the influence of differing models on workers' beliefs about models' efficacy. Here, we examine the effect of integration of HIV care into the general health system in India. In 2014, India replaced its stand-alone model of HIV service delivery-Community Care Centers (CCCs)-with a purported integrated model that delivers HIV medical services at general hospitals and HIV psychosocial services at nearby Care and Support Centers (CSCs). We examine 15 health workers' perceptions of how change from the earlier stand-alone model to the current model impacted women's care in a district in Uttar Pradesh, India. Results indicate that (1) Women's antiretroviral (ART) adherence and utilization of psychosocial support service for HIV/AIDS suffered when services were not provided at one site; (2) Provision of inpatient care in the CCC model offered women living in poverty personal safety in accessing HIV health services and promoted chances of competent ART usage and repeat service utilization; and (3) Although integration of HIV services with the general health system was perceived to improve patient anonymity and decrease chances of HIV-related stigma and discrimination, resource shortages continued to plague the integrated system while shifting costs of time and money to the patients. Findings suggest that integration efforts need to consider the context of service provision and the gendered nature of access to HIV care.

Pregnancy interrupted: loss of a desired pregnancy after diagnosis of fetal anomaly.

Prenatal diagnostic techniques both enable and force women and couples to make decisions about whether to continue a pregnancy where the fetus has an anomaly. Few studies have explored the decision-making and bereavement processes of women who terminate a desired pregnancy after the discovery of a fetal anomaly. This reports the qualitative results of a study designed to explore these processes while placing them within the context of the societal milieu. Findings are reported as themes that emerged from the 30 intensive interviews conducted with women at varying stages after this experience. These include mythical expectations based on denial that anomaly could occur, misconceptions about the nature of prenatal testing and inaccurate expectations about the experience and duration of grief. Further, the contradictory norms in society are defined as creating additional dilemmas for women as they attempt to gain support and understanding following their loss. Suggestions for how providers may assist women with their grief are incorporated.

Leadership, Literacy, and Translational Expertise in Genomics: Challenges and Opportunities for Social Work.

The transdisciplinary field of genomics is revolutionizing conceptualizations of health, mental health, family formation, and public policy. Many professions must rapidly acquire genomic expertise to maintain state-of-the-art knowledge in their practice. Calls for social workers to build genomic capacity come regularly, yet social work education has not prepared practitioners to join the genomics workforce in providing socially just, ethically informed care to all clients, particularly those from vulnerable and marginalized groups. The authors suggest a set of action steps for bringing social work skills and practice into the 21st century. They propose that good genomic practice entails bringing social work values, skills, and behaviors to genomics. With education and training, social workers may facilitate socially just dissemination of genomic knowledge and services across practice domains. Increased genomic literacy will support the profession's mission to address disparities in health, health care access, and mortality.

Preparation for prenatal decision-making: a baseline of knowledge and reflection in women participating in prenatal screening.

OBJECTIVE: This prospective study gathered baseline information about knowledge and intentions regarding prenatal testing from women attending their nuchal translucency (NT) ultrasound and first sequential blood screen. METHOD: Surveys including questions about pregnancy history and hypotheticals about fetal diagnoses were distributed to all willing participants at an urban hospital and a suburban medical building during the waiting time for the NT (N = 659). RESULTS: The majority "never thought anything could be wrong" with their fetus and had not talked with the father or the health providers about that possibility. Presented with varied fetal diagnoses, the larger group nearly always "had the baby", except in the case of a fatal condition where 28% said they would have the baby in contrast to 26% who would end the pregnancy (remainder undecided). Hypotheticals about varied fetal conditions were generally "undecided" by a quarter to nearly half of the respondents. CONCLUSION: Women's baseline knowledge and reflection about the nature of prenatal screening and diagnosis are minimal in contrast to the large impact positive results could have on their lives. Providers need to weigh the benefit of priming decision-making by exposing women to the possibility of fetal diagnosis, against the cost of raised anxiety.

In response to need: an analysis of social work roles over time.

In this qualitative research synthesis, interviews with 22 early health-related social workers were reexamined to identify themes that emerged when these social workers discussed the roles and goals of their work. Those interviews, with colleagues of Ida M. Cannon and those leaders in the next generation of social workers who had practiced during the first half of the 20th century, were conducted in 1976. For this study, the themes that emerged from the original interview data as social workers' responses to perceived needs were then compared with data consisting of 80 cases, drawn from four more recent casebooks (1982, 1989, 1996, 2010), that followed a framework of practice in context. The comparison demonstrated that themes remain consistent over time and include responses to needs created by wars, due to new and underserved populations, created by public health crises, created by technological advances, experienced by organizations, and resulting from economic and policy issues, as well as needs of clients. Analysis also suggests that caution is in order to avoid being co-opted by organizations and others in power at the cost of the profession's social justice mission and ethical imperatives.

The implicit contract: implications for health social work.

Identifying common patient dynamics is useful for developing social work practice sensitivity in health social work. This article draws on findings from a study of women who terminated desired pregnancies because of fetal anomalies and identifies dynamics that may be applicable to many health settings. Data suggest that women have expectations that submission to medical care, particularly high-tech medical care, should ensure a positive outcome--in this case a healthy baby. Analysis of data reveals the presence of an implicit contract that the women hold with the medical system,"Mother Nature," or society. The analysis carries an implication that health social work should help patients develop realistic expectations about health care. The presence of implicit contracts may have further implications for liability and litigation. Social work roles and interventions are addressed.