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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]

Objective: Assess the impact of prenatal diagnosis of Robin sequence (RS) on parental experience during gestation and early infancy. Design: Prospective case-control study. An online survey was administered via email to 44 parents representing 34 unique patients with RS. Participants: Parents of children diagnosed with RS and who received mandibular distraction at our tertiary care children's hospital. Participants were separated by the timing of RS diagnosis into prenatal and control postnatal groups. Main Outcome Measures: Effects of timing of diagnosis on parents' preparation, caregiver support, education about the condition, stress, and overall mental health. Results: Complete responses were received from 44 parents representing 34 unique patients (50% response rate): prenatal, n = 17; postnatal, n = 27. Prenatal diagnosis improved parents' satisfaction regarding time to prepare for treatment (P =.001), stress of uncertainty about their child's health (P =.018), and stress about the operation(s) their child would need (P =.001). Both the prenatal (82%) and postnatal (78%) groups reported a negative impact on mental health based on diagnosis timing. All parents in the prenatal group preferred having received a prenatal diagnosis and the majority of the postnatal group (85%) would have preferred to have received the diagnosis prenatally. Conclusions: Prenatal diagnosis of RS provided tangible benefits for parents by allowing them to mentally prepare, make plans for delivery and treatment, and become educated about the condition. Parents in both groups reported a negative impact on their mental health based on diagnosis timing and the majority of parents consistently preferred prenatal diagnosis. [ABSTRACT FROM AUTHOR]

Medical imaging in pregnancy (antenatal imaging) is routine. However, the effect of seeing fetal images on the parent–fetal relationship is not well understood, particularly for fathers or partners, or when using advanced imaging technologies. This review aimed to explore how parent experience and prenatal attachment is impacted by antenatal imaging. Database searches were performed between September 2020 and April 2021 Inclusion criteria were English language primary research studies published since 2000, describing or reporting measures of attachment after antenatal imaging in expectant parents. The Pillar Integration Process was used for integrative synthesis. Twenty-three studies were included. Six pillar themes were developed: 1) the scan experience begins before the scan appointment; 2) the scan as a pregnancy ritual; 3) feeling actively involved in the scan; 4) parents' priorities for knowledge and understanding of the scan change during pregnancy; 5) the importance of the parent–sonographer partnership during scanning; and 6) scans help to create a social identity for the unborn baby. Antenatal imaging can enhance prenatal attachment. Parents value working collaboratively with sonographers to be actively involved in the experience. Sonographers can help facilitate attachment by delivering parent-centred care tailored to parents' emotional and knowledge needs. [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]

Aims and objectives: To explore women's emotional responses throughout the process of terminating a pregnancy for medical reasons. Background: Making the choice to terminate a desired pregnancy for medical reasons has a negative impact on women's health, as it is a distressing process that involves making hard decisions and readjusting one's expectations of an idealised pregnancy. Methods: A qualitative phenomenological study was conducted following the COREQ checklist. Fifteen semi‐structured interviews and two focus groups were conducted with women who had terminated their pregnancies for medical reasons, previous to and during the COVID‐19 lockdown. Subsequently, we analysed the content. Results: One main category, emotional journey during the process of terminating the pregnancy, and six subcategories were identified: (I) representation and desire to become a mother, (II) main concerns, (III) impact of the news, (IV) decision‐making, (V) emotional responses before termination for medical reasons and (VI) emotional responses after termination for medical reasons. All contributed to understanding the specificities of the different phases that make up the emotional journey of terminating a pregnancy for medical reasons. Conclusions: The findings of this study suggest that there are a number of predominant emotions that professionals need to be aware of in order to help women work through them and lessen the impact of pregnancy termination on their mental health. COVID‐19 had different connotations depending on the women's experiences. Relevance to clinical practice: Our results highlight how important the role of healthcare staff is in caring for these women and their partners, which involves recognising their emotions throughout the process. Our results also underline how useful it is to conduct qualitative studies in this context, since they constitute a set of activities and interventions that result in the administration of nursing care in itself. Patient or Public Contribution: The ultimate goal of the action research study is to design a positive mental health intervention. Participants will contribute to the design and final approval of the intervention. [ABSTRACT FROM AUTHOR]

Background: Pregnancy is a period of transformation, hope, expectation, and worry for women and their families. A high-risk pregnancy refers to a pregnancy in which the mother and/or fetus are at greater-than-normal risk of complications, and it evokes a range of emotional and psychological experiences that largely depend on the care and support provided by health professionals. The purpose of this review is to summarize the existing literature on the lived experience of hope in women facing a high-risk pregnancy related to their own health and/or medical conditions related to the fetus. Methods: This review followed the Joanna Briggs Institute's methodology. No limits on a date were applied to the search. Identified titles and abstracts were screened to select original reports and were cross-checked for any overlap of cases. We included studies that emphasized the experience of hope of pregnant women dealing with a pregnancy complication. Main Results: According to the results of the present scoping review, we found two main dimensions: women experiencing a high-risk pregnancy themselves and prenatal diagnosis. In both cases, the women were in a dilemma between hope and hopelessness. Conclusion: The findings demonstrate that women facing high-risk pregnancies struggle with multiple fears and concerns about their own health and the fetus's health. Further research is needed to identify best practices for the care provided to the vulnerable populations. [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]

Abstract Background Prenatal diagnosis of fetal congenital heart disease (CHD) is becoming widely available but there is a lack of understanding on such expectant mothers’ experiences during pregnancy. This was the first study to investigate the pregnancy experience of Korean mothers with a prenatal fetal diagnosis of CHD. Methods In-depth interviews were conducted with 12 mothers regarding their child’s prenatal diagnosis of CHD and the adaptive processes during pregnancy. The data were transcribed and analyzed according to the grounded theory framework. Results When the diagnosis of fetal CHD was suspected, mothers desperately sought accurate information regarding CHD while hoping in vain for a misdiagnosis. When the definitive diagnosis was made, most pregnant women experienced psychological trauma and pain, framed in the stigma and burden of having an imperfect child. Provision of accurate health advice and emotional support by a multidisciplinary counseling team was crucial at this phase, forming recognition that CHD could be treated. When fetal movements were felt, mothers came to acknowledge the fetus as an independent being, and made their best efforts to protect the fetus from harmful external influences using traditional TaeKyo mindset and practices, which in turn, were helpful in restructuring the meaning of the pregnancy. Conclusions Mothers went through a dynamic process of adapting to the unexpected diagnosis of CHD, which was closely linked to being able to believe that their child could be treated. Early counseling with precise information on CHD, continuous provision of clear explanations on prognosis, sufficient emotional support, and well-designed prenatal education programs are the keys to an optimal outcome.

Accessible Summary: What is known on the subject: Many parents find out that their unborn baby has a difference in their health, development, or genetics.This news is often unexpected and can be distressing and traumatic, which can lead to anxiety. There is a gap in support for parents. What the paper adds to existing knowledge: This paper offers a story of the lived experience of the first‐author, a mental health nurse who was told that her baby had a difference late in pregnancy.The narrative moves through the anxiety and difficulties faced when falling between gaps in the systems. What are the implications for practice: This paper identifies the need for more support for parents who receive a prenatal diagnosis.This support is within the mental health nurse scope of practice across a range of settings and services.People who have been given a psychiatric diagnosis have been excluded from other studies that explore the experience of the unexpected news of a congenital anomaly.Research in this area is indicated. Relevance to mental health nursing: Mental health nurses are well‐positioned to address the gap in psychosocial support for parents who have received a prenatal diagnosis.As clinicians who are recognized to deliver federally funded pregnancy support counselling, psychosocial support is within the mental health nurse scope of practice.Some parents will require a higher level of support, assessment and intervention when they experience reactive mental illness or pre‐existing mental illness is exacerbated.Furthermore, people who have received a psychiatric diagnosis have been excluded from studies that explore the experience of receiving a prenatal diagnosis.This exclusion has resulted in a gap in knowledge. Introduction: Expectant parents who receive a prenatal diagnosis of a congenital anomaly often experience shock, distress and a heightened risk of mental illness. Aim: This paper aimed to highlight the gap in psychosocial support for parents who receive a prenatal diagnosis through the personal narrative of a mental health nurse who received a third‐trimester diagnosis. Method: The first‐author reviewed her medical records and photos to recall moments of the experience and prompt reflection. Findings: The narrative moved through the shock, guilt and subsequent pathological anxiety that followed a prenatal diagnosis at 32‐week gestation and the option to terminate. Discussion: The gap in psychosocial supports for parents who receive a prenatal congenital anomaly diagnosis raises the risk to parental mental health and potentially confounds the risk to the baby. Mental health nurses are well‐positioned as service providers to fill this gap. Implications for Practice: The provision of psychosocial support after a prenatal diagnosis is within the mental health nurse scope of practice. This support may be provided through pregnancy support counselling, innovative nurse‐led perinatal mental health services or as additional support to a parent with the lived experience of mental illness who receives a prenatal diagnosis of a congenital anomaly. [ABSTRACT FROM AUTHOR]

The article presents the discussion on favor of evidence-based policy development for expanding prenatal genetic testing. Topics include "severe" medical conditions categorized as such according to "actual patient goals and desires;" and beliefs regarding family planning laying the foundation for shared decision-making before, during, and after pregnancy.

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]

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]

Background: Providers often use birth plans to document parents' wishes for their fetus with a life-limiting condition. Objective: The objective of the study was to (1) discover important components of a birth plan for parents and providers who carry them out, and (2) understand the experience of parents and providers with birth plans. Methods: The study design involves mixed-methods, descriptive, exploratory survey. This involves parents (n = 20) of a pregnancy complicated by a life-limiting diagnosis and providers who care for them (n = 116). The approach involves descriptive and univariate analyses for quantitative data and thematic analysis for qualitative data. Results: Consistent components for families and physicians were diagnosis and medical management of the infant. Families gave greater emphasis on memory-making preferences. Parents feel birth plans give them a sense of control. Themes emerged from parents' experience of creating a birth plan are as follows: sense of control, therapeutic, memory making, effective communication, feeling prepared, and unexpected events. Most physicians feel comfortable discussing goals of care with families but report insufficient time. The importance of components of birth plans and perception of the parents' understanding of the prognosis varied by specialty. Discussion: Birth plans are beneficial and provide a greater sense of control for parents. Most physicians feel comfortable utilizing them. More than one-third of the physicians do not feel that they have time to complete a birth plan with parents. Communication between physicians and families about limitations of the plan and the potential trajectories could be improved. Communication between maternal and neonatal care providers regarding parent expectations and understanding could also be improved. [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]

‘Experiential knowledge’ is increasingly recognised as an important influence on reproductive decision-making. ‘Experiential knowledge of disability’ in particular is a significant resource within prenatal testing/screening contexts, enabling prospective parents to imagine and appraise future lives affected by disability. However, the concept of ‘experiential knowledge’ has been widely critiqued for its idiosyncrasy, its impermanence and consequently its perceived inferiority to (medical) knowledge. This paper explores some of these key critiques of experiential knowledge through an analysis of its constitution and uses in the context of reproductive decision-making. Seventeen UK-resident women with Spinal Muscular Atrophy (SMA), or with SMA in their family, took part in two in-depth interviews: one in 2007–9 and the other in 2013–4. By comparing and contrasting these women's accounts at two time points, this paper demonstrates the stark contrast between ‘lived experience’ of SMA (the visceral everyday realities of life with the condition) and the various way(s) this experience was transformed into, and presented as, ‘knowledge’ through the processes of making, and accounting, for reproductive decisions. The analysis highlights that multiple, distinct and sometimes competing experiential frameworks are used to conceptualise SMA across time and context. However, rather than evidence of its fallibility, this finding highlights that ‘knowledge’ is an inappropriate vessel with which to capture and transfer ‘experiential knowledge’. Rather, we need to consider how to value such insight in ways that harnesses its inherent strength without leaving it vulnerable to the epistemological critiques attracted by labelling it ‘knowledge’. [ABSTRACT FROM AUTHOR]

The aim of this article was to explore whether expectant parents' attitudes to termination or continuation of pregnancy, both in general and in case of fetal abnormality, are affected by previous experiences of miscarriage and whether attitudes change after ultrasound screening with normal findings. It was also of interest to investigate differences in attitudes in relation to age, parity and gender. A prospective one-year cohort study was carried out. Questionnaires were administered before and after the ultrasound examination. Analyses included 1258 women and 925 men. A comparison between the results pre- and post-ultrasound showed that after the ultrasound examination, there were significant changes towards a more positive attitude to give birth to a baby with an abnormality. Men were significantly more willing to terminate for a fetal abnormality and significantly less hesitant towards abortion in general than women. Women aged 35 years or older were significantly less willing to give birth to a baby with an abnormality and significantly more positive to termination for fetal abnormality than younger women. Parents showed understanding attitudes towards other parents' decisions no matter what these were. We conclude that parents need individualized information and support in connection with prenatal diagnosis, due to parental hesitancy. Midwives play an important role in this. [ABSTRACT FROM AUTHOR]

Pregnant women routinely undergo prenatal screening in Australia and this has become a common experience of motherhood. When prenatal screening or prenatal testing results in diagnosis of a serious fetal abnormality, women are presented with a decision to continue or terminate their pregnancy. Few recent studies have explored women’s psychosocial experience of prenatal diagnosis and pregnancy termination for fetal abnormality, and within this small group of studies it is rare for research to consider the embodied aspect of women’s experiences. This paper reports on qualitative findings from in-depth interviews with 59 women in Melbourne, Australia who received a prenatal diagnosis of a significant abnormality and decided to terminate the pregnancy. Interview transcripts were coded inductively through thematic analysis. Two themes about embodiment were generated from the interviews: transitioning embodiment, and vulnerable bodies in un/comfortable spaces. Theory of pregnant embodiment was drawn on in interpreting women’s narratives. Recommendations arising from the analysis include health professionals recognising, acknowledging and accommodating the transitioning embodied state of women as they consider, prepare for, undergo and recover from pregnancy termination for fetal abnormality. Further recommendations address the connections and disconnections between this transitioning embodied state and the spaces of clinics, hospitals and home. [ABSTRACT FROM AUTHOR]

Significance Lethal fetal diagnoses are made in 2% of all pregnancies. The pregnancy experience is certainly changed for the parents who choose to continue the pregnancy with a known fetal diagnosis but little is known about how the psychological and developmental processes are altered. Methods This longitudinal phenomenological study of 16 mothers and 14 fathers/partners sought to learn the experiences and developmental needs of parents who continue their pregnancy despite the lethal diagnosis. The study was guided by Merleau-Ponty's philosophic view of embodiment. Interviews ( N = 90) were conducted with mothers and fathers over time, from mid-pregnancy until 2–3 months post birth. Data analysis was iterative, through a minimum of two cycles of coding, theme identification, within- and cross-case analysis, and the writing of results. Results Despite individual differences, parents were quite consistent in sharing that their overall goal was to “Have no regrets” when all was said and done. Five stages of pregnancy were identified: Pre-diagnosis, Learning Diagnosis, Living with Diagnosis, Birth & Death, and Post Death. Developmental tasks of pregnancy that emerged were 1) Navigating Relationships, 2) Comprehending Implication of the Condition, 3) Revising Goals of Pregnancy, 4) Making the Most of Time with Baby, 5) Preparing for Birth and Inevitable Death, 6) Advocating for Baby with Integrity, and 7) Adjusting to Life in Absence of Baby. Prognostic certainty was found to be highly influential in parents' progression through developmental tasks. Conclusion The framework of parents' pregnancy experiences with lethal fetal diagnosis that emerged can serve as a useful guide for providers who care for families, especially in perinatal palliative care. Providing patient-centered care that is matched to the stage and developmental tasks of these families may lead to improved care and greater parent satisfaction. [ABSTRACT FROM AUTHOR]

The number of pregnant women of advanced maternal age has increased worldwide. Women in this group have an increased chance of fetal abnormality. To explore Japanese women's experiences regarding maternal age-specific risks and prenatal testing, we conducted a descriptive qualitative study. Semi-structured interviews were conducted with 16 women aged 35 years or over who had given birth within the previous three months to a healthy, term infant. Thematic analysis of transcribed interview data was performed and three major themes were identified: inadequate understanding of genetic risks; insufficiently informed choice regarding prenatal testing; and need for more information from health professionals. Some participants were not aware of maternal age-specific risks to the fetus. Many took their cues from health professionals and did not raise the topic themselves, but would have considered prenatal testing if made aware of the risks. Nurses, midwives and other health professionals need to adequately inform pregnant women about the genetic risks to the fetus and offer testing at an appropriate stage early in the pregnancy. [ABSTRACT FROM AUTHOR]

Due to technological advances in antenatal diagnosis of fetal abnormalities, more women face the prospect of terminating pregnancies on these grounds. Much existing research focuses on women's psychological adaptation to this event. However, there is a lack of holistic understanding of women's experiences. This article reports a systematic review of qualitative studies into women's experiences of pregnancy termination for fetal abnormality. Eight databases were searched up to April 2014 for peer-reviewed studies, written in English, that reported primary or secondary data, used identifiable and interpretative qualitative methods, and offered a valuable contribution to the synthesis. Altogether, 4,281 records were screened; 14 met the inclusion criteria. The data were synthesised using meta-ethnography. Four themes were identified: a shattered world, losing and regaining control, the role of health professionals and the power of cultures. Pregnancy termination for fetal abnormality can be considered as a traumatic event that women experience as individuals, in their contact with the health professional community, and in the context of their politico-socio-legal environment. The range of emotions and experiences that pregnancy termination for fetal abnormality generates goes beyond the abortion paradigm and encompasses a bereavement model. Coordinated care pathways are needed that enable women to make their own decisions and receive supportive care. [ABSTRACT FROM AUTHOR]

Despite research on BRCA1/2 mutation carriers attitudes towards preimplantation genetic diagnosis (PGD), considerably less is known about individuals' experience with its use. Through case reports of BRCA1/2 mutation carriers' thoughts on, and use of, PGD, this paper highlights how the option of PGD is experienced and negotiated in the context of reproductive and life-course goals. Drawing on qualitative interviews with 38 BRCA1/2 mutation carriers, this article focuses on a subsample of 10 interviewees who sought consultation for, and/or attempted, PGD, with in-depth reports of 3 cases and summary decisions of the remaining 7. Three couples decided against PGD, and one was deciding at the time of the interview. Interviewees discuss key aspects of their experience prior to, and going through, PGD for BRCA1/2, including potential challenges of becoming pregnant through PGD and of heightened pressure to achieve their reproductive goals more quickly. Despite considerable focus on ethical issues in screening embryos for mutations associated with adult-onset cancer risk, less attention has been paid to the technical, logistical, and related psychosocial issues. Narrative case reports may help individuals develop appropriate expectations of PGD for BRCA prepare for possibly challenging decisions and outcomes, and ultimately determine whether it is compatible with their reproductive goals. [ABSTRACT FROM AUTHOR]

Background Knowledge of disability is considered key information to enable informed antenatal screening decisions by expectant parents. However, little is known about the role of experiential knowledge of disability in decisions to terminate or continue with a pregnancy diagnosed with a fetal abnormality. Objective To explore the role that expectant parents' experiential knowledge of disabilities and conditions can play in real-life decisions to continue or end a pregnancy with a fetal abnormality. Design Secondary analysis of qualitative narrative interview data informed by contextual systems framework. Setting Participants were recruited throughout the United Kingdom and interviewed between 2004 and 2006. Participants Twenty-four women and four of their male partners who had direct or indirect experience of disability or illness and who had proceeded with or ended a pregnancy diagnosed with a fetal abnormality. Findings Most respondents recounted using their experiential knowledge of disability, whether of their unborn baby's condition or of a different condition, to try to imagine the future for their unborn child, themselves and their family when making their decision. Some, who were considering continuing their pregnancy and had little or no experience of their unborn baby's specific disability, sought out others' experiences of the condition following antenatal diagnosis.The nature of a parent's experiential knowledge did not predict whether they continued with or terminated their pregnancy. Discussion Prospective parents may find it helpful to discuss their existing knowledge of their unborn baby's condition with health professionals who are aware of the influence this might have on parents' decisions. [ABSTRACT FROM AUTHOR]

Abstract: Objectives: The aim of the study was to explore pregnant women’s experiences of received information in relation to fetal malformation detected on ultrasound. Method: An exploratory descriptive design was used. Semi-structured interviews with women who continued their pregnancy and women who chose to terminate were audiotaped, the information pathway described, and the text subjected to qualitative content analysis. Results: Most of the women who expected a baby with an abnormality experienced the information given as insufficient, often misleading, conflicting, or incoherent, and sometimes negative. Important factors for interaction between women and caregivers were timing, duration, and manner of the initial dialog and ongoing support. Positive interactions improved the women’s ability to understand the information, fostered feelings of trust and safety which reduced their anxiety. Conclusion: Women expressed dissatisfaction both regarding the care-givers’ methods of giving information and apply for information from different specialists and continuity. The study highlights important factors which may be helpful to the professionals for improving the information to this vulnerable group of women. [Copyright &y& Elsevier]

Abstract: There has been a striking growth in the availability of health-related information based on personal experience in recent years and internet users are often drawn towards other people’s stories about their health. Accounts of other people’s experiences might convey social and emotional information that is not otherwise available but little is known about how it is used or the implications of its use in practice. This paper examines how people refer to information about other people’s experiences when accounting for decisions about antenatal diagnostic testing for foetal abnormality. We conducted a secondary analysis of 37 qualitative interviews undertaken across the UK with 36 women and nine of their male partners (eight couples were interviewed together) who talked about diagnostic testing for foetal abnormality in 55 pregnancies. When describing their decisions, respondents referred to examples of knowledge gleaned from their own and other individuals’ experiences as well as information based on biomedical or clinical-epidemiological research (usually about the probabilities of having a child affected by health problems or the probability of diagnostic tests causing miscarriage). Both forms of knowledge were employed in people’s accounts to illustrate the legitimacy and internal coherence of decisions taken. The analysis demonstrates the personally idiosyncratic ways that people reflect on and incorporate different types of information to add meaning to abstract ideas about risk, to imagine the consequences for their own lives and to help them to make sense of the decisions they faced. [Copyright &y& Elsevier]

UK policies emphasize the importance of providing balanced and accurate information on Down's syndrome to pregnant women and supporting them to make informed choices about screening, diagnostic tests and, ultimately, whether or not to continue their pregnancy. This article presents key findings of a study that investigated the experiences of new parents of babies with Down's syndrome and the views of midwives and antenatal screening co-ordinators (ASCs) on what information and support is provided during pregnancy and at birth. While midwives/ASCs believe they provide information and support, the experience of parents indicates variability in how effectively these professionals deliver information to mothers and support them in making informed choices. This study reinforces the need for further training on what it is like to live with Down's syndrome in today's world for health professionals working in maternity services. [ABSTRACT FROM AUTHOR]

Objectives: To determine whether training and experience in performing ultrasound examinations are factors that influence the prenatal detection of congenital heart defects (CHDs) in a non-selected population, in order to evaluate and improve the current training program. Methods: All pregnant women who received a routine second-trimester ultrasound scan by a sonographer/midwife and delivered at our hospital between February 1991 and December 2001 were registered prospectively. Less experienced sonographer/midwives who had performed between 200 and 2000 routine examinations were compared with experienced sonographer/midwives who had carried out more than 2000 examinations. During the first 5 years of the study the heart structures obtained were registered in detail. Results: Of 29,035 fetuses, 35/82 (43%) major CHDs were prenatally detected at the routine examination. The experienced sonographer/midwives obtained both the four-chamber view and the great arteries in 75%; the figure for the less experienced sonographer/midwives was 36% (P < 0.001). The differences in detecting major heart defects were 22/42 (52%) and 13/40 (32.5%), isolated CHDs 8/18 (44%) and 6/22 (27%) and CHDs with associated malformations 14/24 (58%) and 7/18 (39%), respectively. In both groups some CHDs with an abnormal four-chamber view were missed, although the experienced sonographer/midwives recognized significantly more of the abnormal views than did the less experienced sonographer/midwives (P = 0.002). Conclusions: Experience has a significant impact on the examination of the fetal heart and the prenatal detection rate of major CHDs. To avoid a relatively long learning curve, ultrasound education needs to intensify the teaching of the basic four-chamber view. The great arteries should be included after additional training. Those basic views of the fetal heart must be mastered before new views and advanced technology are added to the fetal heart examination. [ABSTRACT FROM AUTHOR]

Background: In the search for effective interventions aiming to prevent perinatal stress, depression and anxiety, we are evaluating a Mindfulness Based Childbirth and Parenting (MBCP) Program. In this study we explore the participants' experiences of the program.Method: This is a descriptive qualitative study with influences of phenomenology. The participants were expectant couples who participated in the program and the pregnant women had an increased risk of perinatal stress, anxiety and depression. Ten mothers and six fathers were interviewed in depth, at four to six months postpartum. Thematic analysis of the transcripts was conducted.Results: The participants' descriptions show a variety in how motivated they were and how much value they ascribed to MBCP. Those who experienced that they benefitted from the intervention described that they did so at an intra-personal level-with deeper self-knowledge and self-compassion; and on an inter-personal level-being helpful in relationships. Furthermore, they perceived that what they had learned from MBCP was helpful during childbirth and early parenting.Conclusion: Our findings demonstrate that most of the parents experienced MBCP as a valuable preparation for the challenges they met when they went through the life-changing events of becoming parents. The phenomenon of participating in the intervention, integrating the teachings and embodying mindfulness seems to develop inner resources that foster the development of wisdom.Trial Registration: ClinicalTrials.gov ID: NCT02441595, May 4, 2015. [ABSTRACT FROM AUTHOR]

Limited research has been conducted on how the female carrier experiences her life with a haemophilic child, and earlier studies are mostly questionnaire-based. No previous qualitative study on the female carrier's situation has been conducted in Sweden. The aim of the study was to describe the lived experience of being a carrier of severe or moderate haemophilia and of being the mother of a haemophilic child. The study was conducted via qualitative interviews and analysed by means of a phenomenological hermeneutic method; a total of 13 haemophilia carriers were interviewed in 2010. Being a carrier of haemophilia and having a haemophilic child was life changing. The women moved from a state of sad, guilty chaos to reconciling themselves with the new situation. Our analysis revealed three acts in which phenomena appeared: the time after diagnosis, the turning point and reconciliation with a changing life. Emerging as crucial to the process of reconciliation with a changing life was a sense of being fully informed and supported. The Haemophilia Treatment Centre ( HTC) should create an environment that encourages learning, and the team should invite and encourage the woman's partner to be actively involved in the child's care. Moreover, the results indicate that it would be beneficial to invite female carriers to receive patient education at the HTC before they plan to start a family. During this visit, the woman may gain a greater understanding of her carriership to prepare her for future decisions concerning prenatal diagnosis, for example. [ABSTRACT FROM AUTHOR]