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Adverse prenatal diagnoses, regardless of the women's choice of continuing the pregnancy or terminating it, can impact a women's psychological and psychosocial wellbeing. Supportive interventions during this time are important. However, understanding what is deemed useful and best practice is complex and multifaceted. To understand the need for support during this time, the authors undertook a research study where 12 women were interviewed. The women spoke about feeling pressured by time in making a decision regarding their pregnancy option and having limited psychoeducation and support provided. They also spoke about post-traumatic growth in their grief experience. To assist health professionals, the authors have addressed the following areas in the study's findings and discussion sections: the lack of appropriate information delivery skills of the professionals, the need for an assessment of each woman's unique needs, the need for appropriate referrals to be given, and the need for appropriate follow-ups of the women. The SARF (Skills, Assessment, Referral, and Follow-up) model, presented in this article as a synthesis of this research, has the potential to inform the development of clinical services and social work practice to support women's care following adverse prenatal diagnosis. IMPLICATIONS Psychosocial assessments are vital in providing good quality care to women after a poor prenatal diagnosis. The model can provide guidance to ensure that psychosocial assessments and explorations of values are undertaken before referring women to follow-up services. Given social workers' experience in providing psychosocial assessments and their recommendations, social work clinicians should be utilised in health settings to their full scope of practice. [ABSTRACT FROM AUTHOR]

Background: Caring for parents continuing pregnancy after learning about a severe life-limiting condition in their unborn is challenging. Most existing studies focus on affected families, whereas research on the subjective experience of care professionals is scarce. Aim: We aimed to (1) explore experiences and needs of involved care professionals, (2) obtain information about existing care structures, and (3) identify requirements for a structured perinatal palliative care program. Design: Grounded Theory study using theoretical sampling. Data was collected by semi-structured interviews and analyzed following the principles of grounded theory coding and situational analysis. Setting: A total of 18 professionals from 12 different services in Munich and surroundings participated in the study: 8 physicians, 3 midwives, 2 nurses, 1 each pregnancy counselor, grief counselor, chaplain, clinical psychologist, and undertaker. Results: Several organizations provide support for affected parents, but inter-institutional communication is scarce. Due to the lack of a dedicated perinatal palliative care program, professionals make immense and partly unpaid efforts to support concerned parents. Providers experience "collateral beauty" in their work despite all the suffering and grief. This includes the development of a humble attitude and feelings of gratitude toward life, the feeling of having a meaningful task and professional as well as personal growth. Requirements for a structured perinatal palliative care program include: fostering peer support, ensuring regular supervision, and enhancing interdisciplinary exchange. Conclusions: Perinatal palliative care demands a high level of personal engagement but is experienced as highly rewarding by care professionals. [ABSTRACT FROM AUTHOR]

Aims: To map the pathway and service provision for pregnant women whose newborns require admission into the surgical neonatal intensive care unit at or soon after birth, and to examine the nature of continuity of care (COC) provided and the facilitators and barriers to woman‐ and family‐centred care from the perspective of women/parents and health professionals. Background: Limited research exists on current service and care pathways for families whose babies are diagnosed with congenital abnormality requiring surgery. Design: A mixed method sequential design adhering to EQUATOR guidelines for Good Reporting of a Mixed Methods Study. Methods: Data collection methods included: (1) a workshop with health professionals (n = 15), (2) retrospective maternal record review (n = 20), prospective maternal record review (17), (3) interviews with pregnant women given a prenatal diagnosis of congenital anomaly (n = 17) and (4) interviews with key health professionals (n = 7). Results/Findings: Participants perceived care delivered by state‐based services as problematic prior to admission into the high‐risk midwifery COC model. Once admitted to the high‐risk maternity team women described care 'like a breath of fresh air' with a 'contrast in support', where they felt supported in their decisions. Conclusion: This study highlights provision of COC, in particular relational continuity between health providers and women as essential to achieve optimal outcomes. Relevance to Clinical Practice: Provision of individualised COC offers an opportunity for perinatal services to reduce the negative consequences of pregnancy‐related stress associated with diagnosis of foetal anomaly. Patient or Public Contribution: No patient or public was involved in the design, analysis, preparation or writing of this review. [ABSTRACT FROM AUTHOR]

In an increasingly litigious medical environment, this study examined women's experiences of their interactions with practitioners when severe abnormalities are discovered at birth. Eight in-depth interviews with women were conducted in France. Data were analysed using Interpretative Phenomenological Analysis. Four superordinate themes were identified: the importance of attunement to women's emotions and needs; the possibility of litigation but no direct accusation; reasons for not resorting to litigation; and reframing and positive transformations. Despite experiencing distress, women were reluctant to make a complaint against practitioners. Several factors may account for this, but practitioners' ability to relate to women with humanity was particularly significant. Women understood the limits of technology and of the care practitioners can provide, but greatly valued practitioners' empathic and honest communications. Thus, adopting a transparent and open approach may foster trusting relationships with women/parents. In turn, this may lower the prospect of litigation being brought against practitioners when severe abnormalities are discovered at birth. [ABSTRACT FROM AUTHOR]

One stated objective of prenatal screening and diagnosis is the preparation for delivering a baby with medical needs or disability, however, psychosocial outcomes of parents who received a prenatal diagnosis suggest that this objective is not yet realised. Preparation may be complicated by diagnostic and prognostic uncertainty. A prenatal diagnosis that includes significant uncertainty due to the heterogeneous presentations, classifications, causes and outcomes is agenesis of the corpus callosum. As a neuroanatomical anomaly identified in the second or third trimesters, the diagnosis is likely to cause distress for expectant mothers, yet there is limited guidance for holistic support. To begin to address the paucity of research, this hermeneutic phenomenological study sought to explore, and provide a telling of the maternal experience of continuing pregnancy after a prenatal diagnosis of agenesis of the corpus callosum. Through interviews and a series of online, asynchronous and facilitated focus groups, lived experiences during pregnancy from the time of diagnosis to birth were explored with 26 mothers who participated in this international study. Themes were constructed through reflexive thematic analysis to describe the experience of the lived phenomenon. The first theme, Under Threat , included subthemes of The Threat to the Life of the Baby and Threatened Image of the Expected Family. The second theme, Day to Day Toward Adaptation , included subthemes of Holding it Together and Falling Apart, and More Than Information, Searching for Meaning, Hope and Control. To realise the commonly stated objective of prenatal diagnosis, to support maternal preparation, healthcare professionals require awareness of the profound, yet individual experience of prenatal diagnosis to adequately respond and support mothers through their continued pregnancies. Healthcare services should be designed to flexibly respond in a woman- and family-centred manner to reduce the threat and support maternal adaptation after a prenatal diagnosis. • Many mothers recounted a dissociative response to the news of the anomaly. • The diagnosis was experienced as a threat to the life of the baby and expected family. • Mothers engaged many strategies to hold it together, and their falling apart was hidden. • Mothers needed more than information, they searched for meaning, hope and control. • Professionals require awareness of the profound experience of a prenatal diagnosis. [ABSTRACT FROM AUTHOR]

The Haredi (ultraorthodox Jewish) community in Israel presents distinct views on disability and prenatal testing compared to the pro-testing attitudes of the Israeli general public. Based on qualitative analysis of semi-structured interviews with Haredi parents of children with Down syndrome, this study explores the interplay between their personal experiences and community norms in the creation of views on disability and pregnancy management. The experiences of life with disability carry varied positive and negative aspects, for both secular and religious parents. However, while this variability sometimes led to re-consideration (for better or worse) of views on disability and prenatal testing among secular parents, we demonstrate that parenting a child with disability did not change the views of Haredi parents regarding the futility of prenatal testing and the value of disability. For them, the Haredi model of disability remained the dominant framework through which life is experienced. While the Israeli general public is supportive of tests performed during pregnancy with the aim of selective terminations of pregnancies when anomalies in the fetus are detected, the most religious Jewish (Haredi) community tends to avoid such testing. The study demonstrates the interplay between cultural norms and personal experiences in forming attitudes toward disability. For Haredi parents, life with a child with Down syndrome did not essentially change their positive perceptions of disability and their rejection of testing the fetus in future pregnancies. Haredi parents' critical view of testing during pregnancy reflects their religious perspective, rather than the perspective of people with disabilities and their empowerment. Haredi parents view children with Down syndrome as 'higher souls' sent by God as a test of faith and a mission, thus constructing testing the fetus for Down syndrome as futile. [ABSTRACT FROM AUTHOR]

Aim: To investigate the factors influencing decisions concerning prenatal diagnosis (PND) and termination of pregnancy for β‐thalassemia in Thai pregnant women. Methods: A total of 142 Thai Buddhist pregnant women waiting for PND were asked to undertake semi‐structured interviews regarding their reasons for PND and their decisions and reasoning concerning pregnancy if the fetus was found to be affected. The interviews were analyzed using a thematic content approach. Results: Thai pregnant women accepted PND for three reasons: to know whether their pregnancies were affected, to confirm that their pregnancies were unaffected and to terminate if their pregnancies were affected. Three decisions identified among the women were to terminate the pregnancy, to continue the pregnancy and undecided. The interview analysis identified five themes and nine sub‐themes affecting pregnancy‐related decision‐making: (i) quality of life (suffering or no disability); (ii) burden (difficulty or acceptability); (iii) sense of motherhood (the best way for the child or I cannot hurt my child); (iv) significant others (support to terminate, support to continue or support to wait for the test result) and (v) conflict in deciding. Conclusion: An acceptance of PND in Thai pregnant women was not always associated with pregnancy termination. Multiple factors influenced the decision to terminate, but not their religious affiliation. [ABSTRACT FROM AUTHOR]

Background: Hepatitis B virus (HBV) screening is an important component of antenatal care for pregnant women in Nigeria. However, the screening rates remain low, particularly at primary healthcare centers (PHCs). The objective of this study was to identify the barriers affecting antenatal HBV screening in PHCs in Nigeria from the perspective of health workers. Methods: We conducted a survey among 30 health workers from 30 PHCs (one per PHC) across three states (Akwa Ibom, Anambra, and Kaduna) in Nigeria. An open-ended questionnaire was used to obtain written responses on the perceived barriers limiting antenatal HBV screening in PHCs and their recommended solutions to the identified barriers. The data were analyzed using an inductive thematic approach. Results: The perceived barriers exist at patient, provider and health system levels. They included: lack of test kits, unaffordability of HBV test, shortage of trained personnel, poor awareness among pregnant women, knowledge of HBV among health workers, high cost of antiviral treatment, and unavailability of HBV vaccine. The recommended solutions to the identified barriers were: making test kits and vaccines available and free, creating awareness about HBV, and capacity-building interventions for health workers. Conclusions: HBV screening of pregnant women attending PHCs in Nigeria appears to be affected by multilevel barriers. As the country continues to work towards eliminating HBV, these highlighted barriers at the patient, provider and health system levels must be addressed through effective and sustainable interventions. [ABSTRACT FROM AUTHOR]

Background: Non‐invasive prenatal testing (NIPT) using cell‐free DNA (cfDNA) has expanded from detecting chromosome aneuploidy to testing for a variety of genetic conditions, including some select single gene disorders. As next generation sequencing/whole exome sequencing technology develops, it may be possible to expand NIPT of cfDNA to identify hundreds of single gene and chromosomal disorders in a fetus, thereby increasing the complexity of pretest counselling and parental decision‐making. Aim: The aim of this study was to assess the views of women on the phenotypes of genetic conditions potentially detectable with expanded NIPT that they would consider severe enough to warrant pregnancy termination. Materials and Methods: Using multiple clinical scenarios, we asked women via an online survey about the early detection of several well‐described genetic phenotypes in pregnancy that in theory could be detected by expanded NIPT. Results: Two hundred and nineteen women participated in this study. There was high support for early diagnosis and the option for termination of pregnancy in conditions perceived as severe (52–71%). Women expressed a preference for testing to be provided by general practitioners and assigned a high value to genetic counselling support (75–90%). In the case of a continuing pregnancy, women recognised the essential role of ongoing psychosocial counselling for family members and childhood early intervention programs. Conclusion: Women expressed clear preferences for termination of pregnancy for severe conditions and as early in gestation as feasible. Information and support from genetic counsellors are a highly valued resource in decision‐making following a prenatal diagnosis of a fetal genetic abnormality. [ABSTRACT FROM AUTHOR]

Aim: To review our experience with the prenatal diagnosis of congenital portosystemic shunt (CPSS). Methods: This is a retrospective study of CPSS cases examined at an ultrasonographic tertiary referral center from 2013 to 2019. The anatomical origin and drainage of the shunt were assessed. Feto‐maternal clinical characteristics and long‐term outcomes were investigated via medical files and telephone interviews with the mothers. Results: Eleven cases were reviewed. Based on the anatomical origins, before or after portal vein division, cases were classified into extrahepatic portosystemic shunt (EHPSS, n = 3, 27.3%) and intrahepatic portosystemic shunt (IHPSS, n = 8, 72.7%). Additional abnormalities were also observed in the EHPSS (n = 2, 66.7%) and IHPSS (n = 3, 37.5%) groups. Intrauterine growth restriction was the most common abnormality (n = 4, 80%). The median age of the pregnant women was 31.9 years (range 26 ~ 43 years). Most cases (n = 8, 72.7%) were diagnosed in the third trimester, and the median gestational age was 31+5 weeks (range 24 ~ 36+6 weeks). Three cases underwent karyotype examinations, and one had trisomy 13. The median time after birth was 2 years (range 0.7 ~ 5.7 years). The overall postnatal live‐birth rate was 60% (6/10), not including one case with no data on pregnancy outcome. The mothers of the six live births indicated that their children were in excellent health. Conclusion: This study indicates that prenatal CPSS diagnosis is feasible, especially in the third trimester. IHPSS is more common than EHPSS. Complicated cases most often occur with EHPSS. Intrauterine growth restriction is the most common concomitant abnormality. The prognosis of most cases is good. [ABSTRACT FROM AUTHOR]

Background: Non‐invasive prenatal screening (NIPS) is being increasingly used by expectant parents. Much provision of this test in Australia is occurring in clinical settings where specialised genetic counselling is unavailable, such as general practice. Potential psychosocial consequences from this kind of prenatal genetic screening remain largely unexplored. Aims: To explore clinicians' experiences with NIPS for aneuploidy, their perspectives of the benefits and harms of NIPS, clinicians' information needs, and their perceptions of the needs of expectant parents. Materials and Methods: Qualitative, semi‐structured interviews with 17 health professionals (clinical geneticists, obstetricians, genetic counsellors and general practitioners) who request and counsel for NIPS in Australian hospital and private practice settings, conducted between June 2019 and February 2020. Results: Five themes were identified relating to clinicians' perceptions and experiences of NIPS in their practice: perceived benefits of NIPS, perceived harms of NIPS (with two subthemes: clinical harms and psychosocial harms), financial and equity‐related concerns, counselling as a protective buffer against perceived harms, and clinicians' unmet education needs. While clinicians view NIPS as a useful and high‐quality screening test, especially for detection of common trisomies, many participants had concerns about how NIPS has been implemented in practice, particularly the quality (and often absence) of pre‐/post‐test counselling and the routinisation of testing for sex chromosome aneuploidies, microdeletion and microduplication syndromes. Conclusion: These findings support the need for targeted clinician training around NIPS, and for a shared decision‐making approach to support expectant parents' autonomous decisions about NIPS. [ABSTRACT FROM AUTHOR]

Background Advances in genetic technologies and ultrasound screening techniques have increased the ability to predict and diagnose congenital anomalies during pregnancy. As a result more prospective parents than ever before will receive a prenatal diagnosis of a fetal abnormality. Little is known about how Australian women and men experience receiving a prenatal diagnosis and how they make their decision about whether or not to continue the pregnancy. Aims This qualitative study aims to describe parental experiences and examine how best to provide support after a prenatal diagnosis. Results Individual in-depth interviews were conducted with 102 women and men approximately six weeks post-diagnosis of fetal abnormality. Data were elicited using a narrative, chronological approach and women ( n = 75) and a sample of male partners ( n = 27) were separately interviewed. Thematic analysis, involving a rigorous process of qualitative coding, enabled iterative development and validation of emergent themes. Participants identified that the shock of the diagnosis can be lessened when good care is delivered, by provision of: clear, accurate and respectful communication; empathic, non-judgemental, professional support; timely access to further testing and appointments; seamless interactions with services and administration; appropriate choices about invasive testing; acknowledgment of the enormity and unexpected nature of the diagnosis, and of the subsequent decision-making challenges; and discussion of the myriad feelings likely to emerge throughout the process. Conclusions This study has demonstrated the importance of providing timely access to accurate information and supportive, non-judgemental care for women and their partners following prenatal diagnosis of a fetal abnormality. [ABSTRACT FROM AUTHOR]

Background: Immigrants experience significant challenges when in contact with healthcare and report less satisfaction with maternity care compared to native Swedes. Research that gives voice to pregnant immigrant women and their partners following a prenatal diagnosis of a fetal anomaly is scarce. Thus, the aim of this study was to explore experiences and preferences of care following a prenatal diagnosis of congenital heart defect among Swedish immigrants.Methods: Pregnant immigrants and their partners were consecutively recruited following a prenatal diagnosis of a congenital heart defect in the fetus. Nine respondents were interviewed in five interviews, four with the aid of a professional interpreter. The material was analyzed using manifest qualitative content analysis.Results: The analysis resulted in five categories: 1) "Trustworthy information", 2) "Language barriers", 3) "Psychosocial situation", 4) "Peer support", and 5) "Religious positions".Conclusion: The potential need for interpreter services, visual information, psychosocial support, coordination with welfare officers, and respect for religious positions about termination of pregnancy are all important aspects for health professionals to consider when consulting immigrants faced with a prenatal diagnosis of fetal anomaly in the fetus. Peer support within this context needs to be further explored in future studies. [ABSTRACT FROM AUTHOR]

Negative, ableist discourse challenging the rights of people with Down syndrome to receive support services and even to be born regularly arise on social media. This disability community has retaliated against such hate speech with resistance narratives that promote the value of people with Down syndrome, with few other recourses available. This article explores online free speech versus ableism in Australia through a major case study of 60 Minutes Australia Facebook discussions. Analysis identifies types of ableism expressed, types of harm caused and dimensions of grassroots responses. Using Timothy Garton Ash's 2016 work Free Speech as a basis for contemporary analysis, we discuss: to what extent should harmful and offensive comments directed at vulnerable populations be tolerated in the name of free speech; might negative, ableist discourse contribute to any social good; and what mechanisms beyond grassroots resistance narratives might effectively respond to harmful, online ableist discourses. The article looks at whether the right to free speech is more important than the harmful effects of online hate speech towards people with Down syndrome. We use the ideas in a book on Free Speech by Timothy Garton Ash to think about whether online hate speech should be allowed or silenced. Our analysis is based on a case study of Facebook discussion threads from a 60 Minutes Australia television segment. People in the disability community speaking up to create resistance narratives is the main way that online disability hate speech is challenged. Other ways that could help are laws, government agencies providing support materials, and social media rules. [ABSTRACT FROM AUTHOR]

This article presents a part of the results of an empirical study conducted at a Parisian hospital between 2011 and 2014. It aimed at understanding the women and couples' motivations to terminate or not a pregnancy once a prenatal diagnosis has revealed a genetically related disease in the embryo or fetus. The article first presents the social and legal context of the study, the methodology used and the pathologies that were encountered. Then, it examines the results of the interviews conducted with 5 women alone and 23 couples explaining their reasons for deciding to terminate or not the pregnancy. Finally, it explores the patients' views about the doctor's involvement in the decision-making process. The findings reveal the reasons they formulate when they ponder whether to terminate or not the pregnancy. It highlights the process of their deliberation, their hierarchisation of arguments and concerns. They also show how patients, though often consumed in sorrow, claim to be the legitimate decision-makers, especially women, in a social and legal context in which the rejection of eugenics is viewed as an undisputable principle. [ABSTRACT FROM AUTHOR]

Background: In Denmark, all pregnant women are offered foetal diagnostic exams in the public healthcare system. Although the participation rate is 97%, an increase is seen in pregnant women's purchase of private scans. Aim: The aim of this study is to gain a deeper understanding of pregnant women's considerations and experiences regarding private scans. Method: This phenomenological-hermeneutical interview-based study includes 10 pregnant women who received private clinic scans. Participants were recruited from private clinics and social media. Findings: Three themes were identified: "Accessibility and affordable", "Control of pregnancy" and "Two different worlds". The pregnant women describe the purchased scans as accessible and affordable, and they use private scans to control their pregnancy. They experience differences and similarities between private and public scans. Especially a clear difference in the purpose and expectations towards them. Conclusion: Pregnant women choose private clinic scans not only for pure entertainment but with rational considerations. [ABSTRACT FROM AUTHOR]

Hemoglobinopathies (HBP) are the most common genetic disorder in Oman and are in need of prevention programs due to the high incidence of β-thalassemia major and sickle cell disease. Prenatal diagnosis (PD) and selective pregnancy termination is shown to be the most effective prevention tool for the control of HBP. However, PD is not available in Oman thus far because abortion is subject to religious, cultural and ethical issues. We have examined the attitude of a number of Omani HBP carrier couples towards prenatal diagnosis and selective abortion. We have interviewed 35 couples at risk visiting the main premarital clinic in Muscat between Jan 2011 and Jan 2012. Couples were interviewed using a pre-structured questionnaire. The majority would have accepted prenatal diagnosis (94%) if the service would be available in the country but pregnancy termination was greatly influenced by religious values. [ABSTRACT FROM AUTHOR]

Background: Parents of children with congenital heart disease (CHD) exhibit high rates of mental health difficulties, which can influence child developmental and behavioural outcomes. While extensive research has focused on CHD‐related stressors that contribute to parental mental health difficulties, few studies have investigated parental coping strategies that may mitigate or heighten risk. This study aimed to identify parental coping strategies following diagnosis of CHD and compare use of coping strategies among different groups (mothers vs. fathers; prenatal vs. postnatal diagnosis). Methods: A diverse sample of 34 parents (20 mothers and 14 fathers) of young children with CHD participated in semistructured interviews focused on their responses to CHD‐related stressors. Coping strategies were identified from qualitative data and categorized according to the COPE Inventory, an instrument that assesses common adult responses to stress. Coping strategies deemed as unique to parenting a critically ill child were identified. χ2 and independent sample t tests evaluated group differences. Results: Parents described using between 1 and 10 different adaptive and maladaptive strategies measured by the COPE Inventory. Most parents (82.35%) also described coping strategies that may be unique to parenting a critically ill child. Mothers were more likely than fathers to report a focus on and venting of emotions (70% vs. 21.43%) and behavioural disengagement (25% vs. 0%). Compared with parents receiving a postnatal CHD diagnosis, those receiving a prenatal diagnosis described a greater variety of coping strategies (6.23 vs. 4.52) and more often reported positive reinterpretation and growth (69.23% vs. 14.29%), behavioural disengagement (38.46% vs. 0%) and denial (38.46% vs. 0%). Conclusions: Parents of children with CHD utilize a variety of coping strategies, some of which are maladaptive. Interventions tailored to the needs of mothers and fathers of young children with CHD, including those receiving a postnatal diagnosis, are needed to promote adaptive coping and optimize family psychosocial outcomes. [ABSTRACT FROM AUTHOR]

In Germany, research on experiences and care pathways of parents continuing pregnancy after a life-limiting fetal diagnosis is scarce. There are several recommendations but few structured programs. We aimed to explore experiences and needs of parents, reconstruct their care pathways, and identify requirements for a perinatal palliative care program. We conducted semi-structured interviews with 11 mothers and 9 fathers and analyzed data using the Saldaña's Coding Method. Codes were organized in templates to reconstruct care pathways. Pathways started with a suspicious finding prompting a referral to prenatal diagnostics. Parents experienced severe emotional distress during prenatal diagnostics due to scarce information, insensitiveness, and a perceived pressure towards abortion. As a result, they overlooked referrals to psychosocial counseling, generating a care gap. Most parents reached the decision to continue pregnancy without professional support. They then chose a trusted midwife or gynecologist as main caregiver during pregnancy. There were no regular referrals to palliative care, which mainly became relevant when the child survived. Our data indicate that a perinatal palliative care program requires early and comprehensive information, sensitivity, and a non-directive approach. Already existing support services need to be identified and connected through structured pathways, with a particular focus on midwives. [ABSTRACT FROM AUTHOR]

Background Recently researchers have suggested that non-medical information may impact the decision to continue or terminate a pregnancy after a prenatal diagnosis. This study is an investigation of what type of information prospective parents need for this decision-making in the case of a condition predisposing to intellectual disability. Method Semistructured interviews were conducted in France, Belgium, and Germany with 33 parents whose children have a syndrome that predisposes to intellectual disability. Results The essential information related to three dimensions: (1) the foetus as a future child and an individual person; (2) the couple as future parents; and (3) the social environment of the future child and his or her parents, and especially the ability of the social environment to provide support. Conclusions The findings introduce a new perspective on these prospective parents' essential needs, highlighting that these needs are not limited to medical information but encompass non-medical information and institutional patterns. [ABSTRACT FROM AUTHOR]

Background: The development of pre-implantation genetic diagnosis (PGD) means that it is possible to avoid the birth of a child with a genetic condition without a termination. Objectives: Three issues were addressed. (1) Do decisions to terminate pregnancy following prenatal diagnosis (PND) differ from decisions not to implant embryos following PGD? (2) Do differences vary according to the condition diagnosed? (3) We performed a preliminary exploration of factors that might influence differences. Method: In Study 1, 216 participants were randomly assigned to two conditions and were asked whether they would terminate a pregnancy (PND group) or avoid implantation (PGD group) following diagnosis of five genetic conditions. In Study 2, 11 women completed a questionnaire prior to an interview. Results: In Study 1, there was interaction between the technology (PND or PGD) and the severity of the genetic condition diagnosed. For the most and least severe conditions, the number of women choosing to terminate/avoid implantation was similar in both groups. For conditions in the middle range of severity significantly more women said that they would avoid implantation. In Study 2, thematic analysis identified a number of themes that might influence decision-making. Conclusion: The technology used to test plays an important factor in decision-making for some conditions. [ABSTRACT FROM PUBLISHER]

Background: Couples who receive a prenatal diagnosis of a fetal anomaly in Victoria, Australia, are generally offered a choice about whether or not to continue with the pregnancy. When a severe or 'lethal' abnormality is diagnosed, some couples decide to continue the pregnancy in the knowledge that their baby may die before or shortly after birth. Several Australian parents who published personal accounts of that experience describe a lack of clear clinical pathways, suggesting those who decide to continue a pregnancy following a diagnosis of a 'lethal fetal abnormality' (LFA) may not be receiving optimal care. Aims: This study aimed to provide empirical Australian evidence of views and experiences of care provision from health professionals (HPs) and parents. Materials and Methods: Two sequential phases of this qualitative study purposively recruited a range of key HPs and parents. Semi‐structured interviews were thematically analysed. Results: Findings reveal that current care provision following prenatal diagnosis of an LFA is 'ad hoc' with both participant groups identifying disparities between parents' needs and available care. However, the goodwill and good intentions of all HPs involved was apparent. There was strong support from both groups for considering a model of perinatal palliative care (PPC) based on existing programs overseas. Conclusions: Future care provision in this setting needs to be redefined. A formal PPC program could ensure better and more consistent experiences of support for parents as well as the HPs working in the field. [ABSTRACT FROM AUTHOR]

When caring for pregnant women at risk for fetal thalassemia, genetic counseling is typically employed to ensure the quality of care and to fulfil individual needs. This qualitative descriptive study aimed to understand women's experiences and further refine their woman-centered care. Through a purposive sampling technique, 20 Thai women in a northeastern province participated in this study, having had undergone prenatal screening and diagnostic tests, and terminated the pregnancy or given birth. Most informants were interviewed in-depth two or three times. Data were analyzed using thematic analysis. Six caregiving themes emerged from their experiences: Theme 1, Amending ambiguity containing sub-themes of Assessing ambiguity in thalassemia, and Making clear the unknown; and Theme 2, Respecting individual difference which described the sub-themes of Assessing and accepting different values; Mother's heartbreak versus a baby living normally, Safeguarding a baby from suffering versus giving life to a baby, and Facilitating shared decisions, without using directives and coercion. Theme 3 was Prioritizing an unborn baby's well-being including the subthemes of Nourishing an unborn baby, and Reassuring an unborn baby's safety, while Theme 4 was Caring beyond courteousness that described the sub-themes of Assistance to regain emotional balance; Enhancing mental strength, and Facilitating religious and spiritual coping. Theme 5, Care given extensively to family and community involved Intervening when 'My family hurt,' and 'I hurt my family,' and Alleviating concerns over community attitude. The last theme, Reducing negative experiences with service delivery, involved sub-themes of Reducing a sense of prolonged waiting and being rushed, and Reducing a sense of limited expertise and technology. In conclusion, regarding a woman-centered approach for these women, nurses should respond to their unique psychosocial, cultural, ethical, religious, and spiritual needs, respect the woman's values, dignity, and decisions, as well as extend the care to the fetus, family, and community. [ABSTRACT FROM AUTHOR]

Aim: To determine and describe the experiences of pregnant women who receive a diagnosis of chromosomopathy and/or foetal malformation during a prenatal check‐up and who decide to legally terminate the pregnancy. Background: When a pregnancy is terminated, the woman must cope with frustrated motherhood. The psychological consequences of this will largely depend on the care and support provided by health professionals. When a congenital anomaly is diagnosed, a patient‐centred communication helps understanding, influences adaptation to the new situation and ensures the person concerned has sufficient (autonomy or independence or ability) to make appropriate decisions. Methods: A qualitative study, based on a phenomenological approach, was carried out through nonparticipant observation and semi‐structured interviews with 27 obstetric patients. NVivo 11 software was used, and content analysis was performed. The manuscript was developed using the COREQ guidelines to inform qualitative studies. Results: The clinical relationship may be affected by communication problems such as patients' perceptions of scarce emotional involvement by obstetricians, by poor psychosocial support during the termination of the pregnancy and by insufficient follow‐up after discharge. Conclusion: Nurses are in a privileged position to promote the empowerment of affected women. It is necessary to improve aspects related to the privacy of patients and the awareness and training of the interdisciplinary team in interpersonal communication. Post‐loss follow‐up is recommended to assess individual needs, thus facilitating an optimal approach to ease the grieving process. Relevance to clinical practice: During the prenatal diagnosis, the existence of a fetal anomaly is emphasized, but support and follow up of the mother may be neglected; therefore, exhaustive knowledge about the obstetric history, the state of health and the expectations of patients is as important as a multidisciplinary team trained in counseling strategies and with a comprehensive care plan that covers all areas, especially those that control maternal emotions. [ABSTRACT FROM AUTHOR]

Objective: To explore the role of antenatal counselling in how parents make treatment decisions following an antenatal diagnosis of Hypoplastic Left Heart Syndrome (HLHS). Background: Antenatal counselling is a critical part of patient management following a diagnosis of fetal congenital heart disease; however, there is a very limited evidence base examining how parents actually experience antenatal counselling and make decisions in this context. Methods: Semi‐structured interviews were conducted with women who had received an antenatal diagnosis of HLHS. Interviews were digitally recorded, anonymised and transcribed verbatim. A thematic content analysis was performed using a constant comparative approach. Results: Eight mothers of surviving children with HLHS were interviewed. Eight key themes emerged including new perspectives on how women receive antenatal counselling and how it affects their decision making. Three themes in particular are new to the literature: (a) Mothers of children with HLHS reported feelings of intense guilt that arose in the antenatal period around potentially causing the condition in their child. (b) For this group of women, recollections of perceived pessimism during antenatal counselling had a lasting impact. (c) Despite support from partners or extended family, women nevertheless experienced a strong sense that antenatal decision making was largely a 'maternal' responsibility. Conclusions: When recounting their experiences of antenatal counselling, mothers of surviving children with HLHS offer new perspectives that can guide fetal cardiologists in how best to support their individual patients. Further research is needed to comprehensively understand the experience of prospective parents counselled for severe forms of fetal congenital heart disease. [ABSTRACT FROM AUTHOR]

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Background: Perinatal mental ill‐health is a global health priority. Mental health screening during pregnancy is a routine part of clinical practice in many public hospital obstetric services across Australia, but implementation in the private hospital system has lagged. Aims: This study explored health professionals' perspectives on the Pre‐admission Midwife Appointment Program (PMAP), an antenatal mental health screening program at the Mater Hospital, Sydney. Materials and Methods: Nine midwives and three medical specialists participated in focus groups or individual interviews; key themes were determined using thematic qualitative analysis. Results: Five major themes and three sub‐themes were identified: immediate benefits to women (identifying women at risk; referrals to support services; supporting and educating women); enhanced overall quality of care at the hospital; the dilemma of partners attending; factors that make the program successful; and recommendations for improvement. Conclusions: Results will inform the implementation of antenatal mental health screening programs at other private hospitals across Australia. [ABSTRACT FROM AUTHOR]

Aim The aim of this study was to explore the effects of prenatal fetal diagnoses of non-lethal anomalies on the psychological well-being of pregnant women throughout their pregnancy. Materials and Methods Fifty-five pregnant women were asked to complete a questionnaire (the Spielberger State- Trait Anxiety Inventory) to assess their anxiety levels at multiple follow-up visits. In-depth interviews were conducted with 20 pregnant women after completion of the questionnaire. Results We identified three stages of psychological distress. The intense negative psychological reaction stage was characterized by an intense psychological distress in response to the loss of an ideal child. The psychological healing stage was characterized by the emergence of coping mechanisms and a concomitant decrease in psychological distress. Finally, the intense negative psychological reaction re-emergence stage was characterized by an increase in psychological distress related to uncertainty regarding the future of the baby. Conclusions Following a prenatal diagnosis of a non-lethal anomaly, both the nature and the intensity of the psychological distress experienced by pregnant women change throughout the remainder of their pregnancy. Throughout the remainder of their pregnancy, these women should be offered effective psychological support that accounts for each of the distinct psychological response stages identified in this study. [ABSTRACT FROM AUTHOR]

Despite much ethical debate concerning non-invasive prenatal testing to abort or to detect genes, research on the experience of those who choose this new technology in China is limited, especially after the introduction of the Two-child Policy. In this article I analyse qualitative data from 25 interviews with pregnant women of advanced maternal age (pregnancy after 35) under the Two-child Policy, conducted in 2014 to 2016, as well as observational data from a 6-month, in-hospital participant observation in 2016. These data were collected with the aim to examine how non-invasive prenatal testing affects pregnant women's risk perceptions and why this technology is widely accepted by pregnant women of advanced maternal age in China. I conclude that the women in my study accepted their 'high-risk' identity within prenatal care, and that non-invasive prenatal testing was integrated in this care. Women's interactions with genetic counsellors, their husbands and close friends and community doctors produced anxieties, with women feeling responsible for the health of their foetuses. Consequently, the women in my study were willing to 'buy' this test for reassurance. The consumption of this new technology by pregnant women after the Two-child Policy lays a foundation for the market development of this technology in urban China. [ABSTRACT FROM AUTHOR]

Increased prenatal diagnoses of sex chromosome aneuploidies (SCAs) amid limited knowledge of their prognoses heighten the need to understand how families contend with the implications of an SCA. To explore the experiences of parents and individuals who received a genetic diagnosis of an SCA (excluding Turner syndrome), we conducted semistructured qualitative telephone interviews with 43 participants affected by these conditions. Parents (n = 35) and individuals (n = 8) expressed almost unanimous interest in more optimistic portrayals of their condition from their providers, even when the prognosis is uncertain. While some participants reported success in receiving accurate information from their provider and identifying supportive resources, numerous families received outdated or misleading information about their condition and lacked direction in accessing follow-up care and support. Parents desire greater coordination of their child's medical care and access to care that approaches an SCA holistically. Opportunities remain to improve the diagnosis and care of individuals with SCAs. [ABSTRACT FROM AUTHOR]

The MERIDIAN study examined whether in‐utero MRI (iuMRI) improves the accuracy of diagnosis of foetal brain abnormalities, when used as an adjunct to ultrasound anomaly scanning. A diagnostic iuMRI differs from routine ultrasound screening because of its infrequent use and scanning procedure. Nested within this trial, this sociological study explored the acceptability of iuMRI as a technology and its contribution to parental decision‐making. Our sociological interpretation of the role of iuMR images in prenatal diagnosis draws on narrative interviews with women (and some partners) who underwent MRI imaging at three different centres. Overall, participants found iuMRI helpful in decision‐making because it either confirmed or disconfirmed previous results, or provided additional information. Expectant couples experienced the iuMR imaging process as informative, but also as having emotive and practical value. Our paper extends the existing sociological literature on antenatal testing and visualising the foetus, by using iuMR diagnostic imaging to further explore the concept of the unborn entity. Our data suggest that alongside the iuMR images, the 'parental gaze' and accompanying commentary are used by parents to construct and transform foetal and parental identities despite ongoing uncertainties about, and shifting social contexts to their pregnancy. [ABSTRACT FROM AUTHOR]

Background: Mental imagery may reflect the present, past or future. Childbirth is often anticipated with joy but also in some cases with fear, which may negatively impact on the childbirth experience. So far, research on birth-related mental imagery in pregnancy is lacking. This study aimed to investigate in detail the phenomenology of spontaneous childbirth-related mental images and the association between main imagery characteristics (valence, positive/negative percentage ratio and impact on behaviour and decision-making) and fear of childbirth. Methods: A concurrent triangulation mixed methods design was employed. Thirty-seven nulliparous, French-speaking women, aged ≥ 18 years in their third trimester of pregnancy completed self-report questionnaires assessing fear of childbirth, spontaneous use of mental imagery, prenatal depression and trait anxiety, and participated in a mental imagery interview to assess spontaneous childbirth-related mental images. Women with a prenatal diagnosis of malformation were excluded. Results: All participants reported having spontaneous mental images of their impending childbirth. The images captured were rich in detail and included a variety of sensory modalities. More positive mental images were associated with less fear of childbirth (r = -0.533, p = .008) and women who had a higher proportion of negative mental images had a higher fear of childbirth (r = 0.428, p = .005). The impact of the most negative mental images on behaviour and decision-making was positively correlated with fear of childbirth (r = 0.342, p = .038). Conclusion: Our results indicate that negative spontaneous childbirth-related imagery is associated with fear of childbirth. Intervention techniques could be developed that focus on enhancing positive childbirth-related mental images during pregnancy and thus fostering a more positive childbirth experience. [ABSTRACT FROM AUTHOR]

Background: To consider the thoughts and actions of healthcare personnel in situations when an adverse prenatal diagnosis must be communicated, including appropriate strategies and skills to respond to information needs and to manage the emotional responses of patients. Methods: Descriptive qualitative study using non-participant observation and semi-structured interviews to analyse the discourses of physicians, midwives, nurses and nursing assistants who provide healthcare to obstetric patients. Results: There may be barriers to effective communication between healthcare personnel and patients, depending on the characteristics of the persons involved, the organisation of healthcare, biotechnological progress and cultural factors. Conclusions: The human quality of healthcare has deteriorated due to excessive workloads and to the growing role played by technology. In order to improve communication, more attention should be paid to human and spiritual dimensions, prioritising empathy, authenticity and non-judgmental listening. An appropriate model of clinical relationship should be based on shared decision making, clarifying the functions of the multidisciplinary team to alleviate a mother's suffering when a pregnancy is interrupted. To do so, protocols should be implemented to ensure the provision of comprehensive care, not only addressing biological issues but also providing psychosocial attention. Finally, training should be provided to healthcare staff to enhance their social skills and cultural competence. This study identifies potential improvements in the interventions made by healthcare personnel and in the organisation of the institution, concerning the attention provided to pregnant women when an adverse prenatal diagnosis must be communicated. [ABSTRACT FROM AUTHOR]

The last decade has experienced unprecedented uptake of noninvasive prenatal testing (NIPT), creating significant changes in the way prenatal clinicians provide services. Through the lens of social shaping of technology, we examine the effects of the introduction of this technology on the health care system in Ontario, Canada. Using a qualitative descriptive approach, we conducted a cross-sectional study investigating clinicians' perspectives of NIPT in 2014, 2016, and 2018. Through in-depth interviews (n = 37), we explored their perspectives on the impact of NIPT on their referral practices, workload, coordination of testing modalities, education and counseling, and elicited their views on recent expansions of the test. Findings suggest that the introduction of NIPT has created unintended consequences with respect to clinician workload and wellness, clinician education, equity of access, and public system resources. Responsiveness from decision makers is key to ensuring the responsible use of NIPT in the health care system. [ABSTRACT FROM AUTHOR]

Introduction: A common concern regarding the introduction of chromosomal microarray in prenatal testing is the concomitant identification of an uncertain copy number variant (CNV) where significance and clinical implication for the unborn child can be difficult or impossible to predict. Following the identification of an uncertain CNV, prospective parents may decide to continue the pregnancy. The aim of this study was to explore how prospective parents manage uncertainty and experience pregnancy in light of an uncertain CNV result.Material and Methods: Qualitative interviews with 16 women and 10 partners who had received a prenatally diagnosed, uncertain CNV. Participants were recruited from the Aarhus University Hospital, Denmark and most were interviewed in their homes 1-14 weeks after birth. Data were analyzed using thematic analysis.Results: Following the CNV diagnosis, some couples focused on the severe syndromes ruled out by the result, whereas others were more concerned with the new potential risks, for example, learning disabilities. Most couples did not remember the actual diagnosis, but all described a number of attention points generated by the CNV result. During pregnancy, the couples used various strategies to limit worry and enjoy their pregnancy, such as limiting information seeking, reducing talk of the CNV, and deferring thoughts of potential consequences. Furthermore, ultrasound was considered a valuable resource for reducing worry as it provided reassurance about the development of the baby. Inherited CNVs caused relief on one hand, but also feelings of responsibility for the child's potential challenges. After birth, worry decreased considerably, but all couples paid some extra attention to the child's development, while also being alert to the risk of wrongfully interpreting the child's development in terms of the CNV. Eleven couples expressed satisfaction with knowing about the child's CNV, whereas five couples would rather not have known.Conclusions: The results indicate that health professionals should be mindful of terminology, remember to point out what has been ruled out by the CNV result, and discuss potential coping strategies with the couple. Furthermore, these couples may have a higher need for ultrasound during pregnancy to help reduce worry. More research is needed on the families' long-term coping. [ABSTRACT FROM AUTHOR]

Ultrasound is routinely used as a prenatal screening and diagnostic tool but has limitations. Some anomalies in the developing fetal brain can be difficult to detect, and in utero magnetic resonance imaging (iuMRI) is increasingly used as an adjunct to ultrasound. However, understandings of patient perspectives of iuMRI technology are still developing. Our qualitative study of 41 mothers who experienced iuMRI was embedded in a diagnostic accuracy trial and aimed to inform policy recommendations that might stem from the clinical findings. Our analysis suggests that iuMRI is seen as useful, offering valuable additional information and helping women make decisions about care options at a difficult time. However, patients’ experiences demonstrated the uncertainty and anxiety associated with the prenatal diagnosis (PND) process relating to brain anomalies including the challenges of their embodied contributions. Our findings suggest more could be done to reduce the impact on pregnant women during an already difficult, anxious period. [ABSTRACT FROM AUTHOR]

Background: Although the toxic effects of prenatal alcohol exposure (PAE) on children are well established, there is emerging evidence about the dynamics and associated demographics of drinking patterns across pregnancy, with risky drinking more likely to take place in the period before pregnancy awareness. This study investigated the use of complementary measurement tools in the understanding of alcohol use across pregnancy and reports on the rates and patterns of alcohol use in a community antenatal setting. Methods: Data on alcohol consumption before and after awareness of pregnancy were collected via multiple measurement tools: anonymous lifestyle questionnaire, TWEAK (Tolerance, Worried, Eye‐opener, Amnesia, K/Cut down) screener questionnaire, and Substance Use Inventory interviews across multiple pregnancy timepoints. Additionally, phosphatidylethanol (PEth), a direct biomarker of alcohol metabolism, collected from newborns' dried blood spot cards, was analyzed. Results: The TWEAK screener was more likely to identify risky drinking behavior than the lifestyle questionnaire. When pregnancy was unplanned, women were more likely to find out they are pregnant significantly later (p < 0.001) and consume alcohol at moderate–heavy levels (p = 0.03), prolonging the risk to the fetus. There was an association between maternal self‐reported alcohol use on the lifestyle questionnaire and Substance Use Inventory interviews, but no association between maternal reports of alcohol use and PEth results (p = 0.72). Women self‐reported moderate–heavy alcohol use in early pregnancy only and a positive PEth screen indicated PAE in late pregnancy, suggesting that these methods may identify different groups of women. Conclusions: Multiple measurement tools and methods are needed to identify PAE at different points across pregnancy. Prospective sensitive interviewing is better suited to detecting PAE in early pregnancy, but not later when social desirability bias is stronger, and the use of an objective biomarker, such a PEth, may be useful for identifying the risk of PAE in late pregnancy. [ABSTRACT FROM AUTHOR]

Prenatal genetic screening (GS) for the most common autosomal aneuploidies encompasses maternal serum screening (MSS) and noninvasive prenatal testing (NIPT, or cell-free fetal DNA testing). In the United States, most maternity care is provided by obstetrician-gynecologists; however, women are increasingly utilizing the services of certified nurse-midwives (CNMs). Currently, limited research exists on midwives' experiences with providing prenatal GS. Therefore, the purpose of this study was to explore CNMs' experiences in providing prenatal GS. A semistructured guide focused on MSS and NIPT was used to interview a convenience sample of 13 CNMs. Results were coded and analyzed using grounded theory to elicit overarching themes. Results were organized into 6 themes describing CNMs' prenatal GS provision: (1) clinical protocols; (2) patient education; (3) patient-CNM shared decisionmaking process; (4) testing initiation; (5) results delivery; and (6) follow-up coordination. Key influences on midwives' perspectives on offering prenatal GS included a noninterventionist approach to pregnancy and past experiences with false-positive MSS results. Participants had an understanding of prenatal GS that was appropriate to midwifery scope of practice. Results indicate that NIPT utilization is compatible with the midwifery philosophy of noninterventionism, although midwives had limited experiences with NIPT to date. [ABSTRACT FROM AUTHOR]

Background: Many of the leading causes of infant mortality are diagnosed prenatally, presenting providers with the ability to present perinatal palliative care planning as an option. Objective: Our study adds to the literature both by describing infant interaction with the health care system and by gaining deeper understanding of the maternal experience after being offered perinatal palliative care. Methods: The study was conducted at a public university-based medical center in the Midwest. Phase 1 consisted of a retrospective review of electronic medical records of 27 mother–infant pairs offered perinatal palliative care, 18 of whom elected to develop a perinatal palliative care. Phase 2 consisted of a focus group and interviews of seven of the mothers. Results: In the initial phase of this study, results revealed differences regarding the infant's end-of-life trajectory, including location of death, number of invasive procedures, and death in the setting of withholding versus withdrawing life-sustaining treatment. Highlighting that without a perinatal palliative care plan in place, the default treatment for infants with prenatally diagnosed life-limiting conditions is likely to be invasive and painful with often times minimal likelihood of long-term survival. Analysis of interview and focus group data revealed three themes: care, choice, and legacy. Conclusion: The authors used their experience with the health care system to draw implications for practice from the focus group and interview data, which care can serve to promote women feeling cared for and cared about, as well as promote opportunities for hope during a fragile pregnancy. [ABSTRACT FROM AUTHOR]

Abstract: Aim: The aim of this study was to describe co‐parenting communication in couples in the context of caregiving for children prenatally diagnosed and born with complex health conditions. Background: Foetal diagnosis of complex health conditions such as heart, central nervous system, or abdominal anomalies are confirmed more often than ever before. Following diagnosis, parents face challenges beginning before birth. The quality of co‐parenting, when two individuals relate to each other as parents and share parental responsibilities, can have an impact on child health and development. Yet, little is known about co‐parenting during the transition to parenthood after foetal diagnosis. Design: This secondary analysis of interview data was informed by Bowlby's theoretical work on a parent's view of self as caregiver and the literature on co‐parenting. Methods: Data were drawn from a larger, mixed methods, longitudinal study and included audio‐recorded interviews conducted with 16 parents participating as eight couples after foetal diagnosis during the third trimester of pregnancy in 2011–2012 and again when children were 14–37 months old in 2014. Analysis of interviews transcribed verbatim focused on co‐parenting communication. Findings: Co‐parenting communication regarding support, agreement and information sharing and a new category of shared meaning were related to the diagnosis before birth. Later, couples evolved in their co‐parenting communication while caring for their toddlers and working towards achieving a sense of normalcy. Conclusion: Variation in co‐parenting communication among couples preparing and caring for children with complex health conditions, including the development of a shared meaning of the child's diagnosis, needs further investigation to inform nursing assessment and guide tailored interventions. [ABSTRACT FROM AUTHOR]

This article reports on parental responses to and needs from health-care providers during pregnancy with a lethal fetal diagnosis (LFD). Sixteen mothers and 14 partners participated in a longitudinal, phenomenological study of continuing a pregnancy with an LFD. During individual and joint couple interviews conducted during pregnancy and postpartum, parents described numerous health-care interactions throughout pregnancy. From the participants' words, Categories of the Content, Process, and Outcome of these interactions emerged. They sought health care for the Content (information and expert guidance), but they desired providers who maintain hope, were caring and nonjudgmental, used a straightforward manner, and showed sensitivity to their developmental journey (Process). They also desired health-care systems that provided continuity of care and minimized waiting times (Process). We propose data-based recommendations for health-care providers to address the two identified opposing Outcomes: Feeling Cared For and Experiencing Added Burden. [ABSTRACT FROM AUTHOR]

Abstract: Through narrative interviews with 20 pregnant ultra-orthodox [Haredi] Jewish women in Israel conducted between 2007 and 2009, we examine the implications for such women of prenatal testing, and of pregnancy as a gendered route of piety. We found that pregnancy signified both a divine mission and possible reproductive misfortunes. Bearing a child with a disability was taken as a test of faith and God’s decree was to be accepted. Fetal anomaly created anxiety about the women’s ability to fulfill their God-given task and about their position in an unwritten hierarchy of gendered righteousness. Challenging reproductive decisions were often assigned to rabbis, but this did not exempt women from viewing themselves as inadequate in their religious devotion. We conclude that prenatal testing becomes a spiritual ordeal that aggravates pregnancy tensions. [Copyright &y& Elsevier]

This article explores obstetricians-gynaecologists’ experiences and attitudes towards abortion, based on two mixed-methods studies respectively undertaken in Italy in 2011-2012, and in Spain (Cataluña) in 2013-2015. Short questionnaires and in-depth interviews were conducted with 54 obstetricians-gynaecologists at 4 hospitals providing abortion care in Rome and Milan, and with 23 obstetricians-gynaecologists at 2 hospitals and one clinic providing abortion care in Barcelona. A medical/moral classification of abortions, from those considered ‘more acceptable’, both medically and morally - for severe foetal malformations - to the ‘least acceptable’ ones - repeated ‘voluntary abortions’, emerged in the discourse of most obstetricians-gynaecologists working in public hospitals, regardless of their religiosity. I argue that this is the result of the increasing medicalisation of contraception as well as of reproduction, which has reinforced the stigmatisation of ‘voluntary abortion’ (in case of unintended pregnancy) in a context of declining fertility rates. This contributes to explain why obstetricians-gynaecologists working in Catalan hospitals, which provide terminations only for medical reasons, unlike Italian hospitals, do not experience abortion stigma and do not object to abortion care as much as their Italian colleagues do. [ABSTRACT FROM AUTHOR]

Several rare diseases are regularly identified during the prenatal and perinatal periods, including dysmelia. How these are communicated to parents has a marked emotional impact, but minimal research has investigated this. The purpose of this study was to explore parent experiences and preferences when their baby was diagnosed with dysmelia. Mothers and fathers were interviewed. Data were analyzed using thematic analysis. The overriding emotion parents experienced was shock, but the extent of this was influenced by several factors including their previous experience of disability. Four key needs of parents were identified, including the need for signposting to peer support organizations, for information, for sensitive communication, and for a plan regarding their child’s care. Parents wanted immediate information provision and signposting to peer support, and for discussions regarding possible causes of the dysmelia or termination (in the case of prenatal identification) to be delayed until they had processed the news. [ABSTRACT FROM AUTHOR]

Our study aimed to identify the knowledge, attitude, and factors associated with uptake of amniocentesis test amongst pregnant women of advanced maternal age (35+ years old). A cross-sectional survey was performed on 481 participants in 2016. Women with higher educational attainment, higher income level, having a baby with congenital defects, and women with better knowledge and/or attitude about amniocentesis test were more likely to accept the test. Our study suggested the importance of counseling for women and more time should be given for them to absorb information before they make their decision to uptake the amniocentesis test. [ABSTRACT FROM AUTHOR]

The role of applied theatre in engaging both lay and professional publics with debate on health policy and practice is an emergent field. This paper discusses the development, production performance and discussion of 'Inside View'. The objectives were to produce applied theatre from research findings of a completed study on genetic prenatal screening, exploring the dilemmas for women and health professionals of prenatal genetic screening, and to engage audiences in debate and reflection on the dilemmas of prenatal genetic screening. 'Inside View' was developed from a multidisciplinary research study through identification of emergent themes from qualitative interviews, and development of these by the writer, theatre producer and media technologist with input from the researchers. Inside View was performed in London and the Midlands to varied audiences with a panel discussion and evaluation post performance. The audiences were engaged in debate that was relevant to them professionally and personally. Knowledge translation through applied theatre is an effective tool for engaging the public but the impact subsequently is unclear. There are ethical issues of unexpected disclosure during discussion post performance and the process of transforming research findings into applied theatre requires time and trust within the multidisciplinary team as well as adequate resourcing. [ABSTRACT FROM AUTHOR]

Background: Screening programmes with referral are a valuable strategy for mitigating consequences of perinatal depression on mothers and their families. The effectiveness of these screening programmes needs to be measured. One potential problem in assessing outcomes is measurement reactivity where the actual measure results in changes in the people being measured. Aim: The aim of this article is to explain the mechanisms and circumstances by which measurement reactivity occurred in a sample of antenatal women who participated in a screening interview. Methods: Fifty-five women who participated in an antenatal screening interview in their second trimester were re-interviewed in their third trimester. These qualitative interviews were conducted between September 2015 and April 2016. Results: The qualitative data suggested that measurement reactivity occurred through mechanisms such as the disclosure, gaining self-knowledge, validation of experiences, and personal agency which resulted in them seeking out support from others. Conclusion: Although the screening interview appeared to improve women’s outcomes, this may have occurred through measurement reactivity. This needs to be considered when designing studies that aim to assess the effectiveness of screening with intervention for antenatal depression. [ABSTRACT FROM AUTHOR]