'Something that helped the whole picture': Experiences of parents offered rapid prenatal exome sequencing in routine clinical care in the English National Health Service.

OBJECTIVES: In October 2020, rapid prenatal exome sequencing (pES) was introduced into routine National Health Service (NHS) care in England. This study aimed to explore parent experiences and their information and support needs from the perspective of parents offered pES and of health professionals involved in its delivery. METHODS: In this qualitative study, semi-structured interviews were conducted with 42 women and 6 male partners and 63 fetal medicine and genetic health professionals. Interviews were transcribed verbatim and analysed using thematic analysis. RESULTS: Overall views about pES were positive and parents were grateful to be offered the test. Highlighted benefits of pES included the value of the additional information for pregnancy management and planning for future pregnancies. An anxious wait for results was common, often associated with the need to make decisions near to 24 weeks in pregnancy when there are legal restrictions for late termination. Descriptions of dealing with uncertainty were also common, even when results had been returned. Many parents described pES results as informing decision-making around whether or not to terminate pregnancy. Some professionals were concerned that a non-informative result could be overly reassuring and highlighted that careful counselling was needed to ensure parents have a good understanding of what the result means for their pregnancy. Emotional support from professionals was valued; however, some parents felt that post-test support was lacking. CONCLUSION: Parents and professionals welcomed the introduction of pES. Results inform parents' decision-making around the termination of pregnancy. When there are no diagnostic findings or uncertain findings from pES, personalised counselling that considers scans and other tests are crucial. Directing parents to reliable online sources of information and providing emotional support throughout could improve their experiences of care.

The effectiveness and design of informed choice tools for people with severe mental illness: a systematic review.

BACKGROUND: People with severe mental illness (SMI) report difficulty in making health-related decisions. Informed choice tools are designed to guide individuals through a decision-making process. AIMS: To determine the effectiveness of these tools for people with SMI and to identify what methods and processes may contribute to effectiveness. METHOD: A systematic electronic search was conducted for studies published between 1996 and January 2018. The search was updated in March 2020. Studies of any design reporting the development or evaluation of any informed choice tool for people with SMI were considered. A structured, narrative synthesis was conducted. RESULTS: Ten articles describing four tools were identified. Tools were designed to assist with decision-making around bipolar treatment, smoking cessation and disclosure of mental illness in employment situations. Positive changes in decisional conflict, stage of change, knowledge and self-efficacy were reported for two tools, though insufficient data exists for definitive conclusions of effectiveness. Feedback from service users and attention to readability appeared key. CONCLUSIONS: The evidence base for informed choice tools for people with SMI is limited. Such tools should be developed in stages and include the views of people with SMI at each phase; readability should be considered, and a theoretical framework should be used to facilitate process evaluation.

Singing for Wellbeing: Formulating a Model for Community Group Singing Interventions.

Research into the benefits of community-based group singing, pertaining to positive wellbeing and Quality of Life is lacking. Additionally, no preferred theoretical framework exists for community singing-based interventions. For the present study, six members of a UK community choir were interviewed using a semi-structured interview approach. Interpretative phenomenological analysis (IPA) was employed. Analysis produced superordinate themes of: Social Factors with key elements such as social bonds and group identity; Psychological Factors, highlighting self-efficacy, self-identity and positive emotions and Psychological Motivations for Joining the Group, including autonomy, change of life circumstance and seeking a new challenge. The style/method of the group, teaching, music and group leader, were shown to have an influence on perceived benefits of the singing group. A key product of this study beyond the evidenced benefits of group singing is the development of an intervention model that optimises wellbeing outcomes in community singing groups underpinned by psychological theory, findings from the wider literature and the results of this study.

Prenatal diagnosis: Women's interactions with practitioners when severe abnormalities are discovered at birth.

BACKGROUND: In an increasingly litigious medical environment, this study examined women's experiences of their interactions with practitioners when severe abnormalities are discovered at birth. METHODS: Eight in-depth interviews with women were conducted in France. Data were analysed using Interpretative Phenomenological Analysis. RESULTS: 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. CONCLUSION: 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.

Pregnancy termination for fetal abnormality: are health professionals' perceptions of women's coping congruent with women's accounts?

BACKGROUND: Pregnancy termination for fetal abnormality (TFA) may have profound psychological consequences for those involved. Evidence suggests that women's experience of care influences their psychological adjustment to TFA and that they greatly value compassionate healthcare. Caring for women in these circumstances presents challenges for health professionals, which may relate to their understanding of women's experience. This qualitative study examined health professionals' perceptions of women's coping with TFA and assessed to what extent these perceptions are congruent with women's accounts. METHODS: Fifteen semi-structured interviews were carried out with health professionals in three hospitals in England. Data were analysed using thematic analysis and compared with women's accounts of their own coping processes to identify similarities and differences. RESULTS: Health professionals' perceptions of women's coping processes were congruent with women's accounts in identifying the roles of support, acceptance, problem-solving, avoidance, another pregnancy and meaning attribution as key coping strategies. Health professionals regarded coping with TFA as a unique grieving process and were cognisant of women's idiosyncrasies in coping. They also considered their role as information providers as essential in helping women cope with TFA. The findings also indicate that health professionals lacked insight into women's long-term coping processes and the potential for positive growth following TFA, which is consistent with a lack of aftercare following TFA reported by women. CONCLUSIONS: Health professionals' perceptions of women's coping with TFA closely matched women's accounts, suggesting a high level of understanding. However, the lack of insight into women's long-term coping processes has important clinical implications, as research suggests that coping with TFA is a long-term process and that the provision of aftercare is beneficial to women. Together, these findings call for further research into the most appropriate ways to support women post-TFA, with a view to developing a psychological intervention to better support women in the future.

Termination of pregnancy for fetal abnormality: a meta-ethnography of women's experiences.

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.

Equity and timeliness as factors in the effectiveness of an ethical prenatal sequencing service: reflections from parents and professionals.

Prenatal sequencing tests are being introduced into clinical practice in many developed countries. In part due to its greater ability to detect genetic variation, offering prenatal sequencing can present ethical challenges. Here we review ethical issues arising following the implementation of prenatal sequencing in the English National Health Service (NHS). We analysed semi structured interviews conducted with 48 parents offered prenatal sequencing and 63 health professionals involved in delivering the service to identify the ethical issues raised. Two main themes were identified: (1) Equity of access (including issues around eligibility criteria, laboratory analytical processes, awareness and education of clinicians, fear of litigation, geography, parental travel costs, and access to private healthcare), and (2) Timeliness and its impact on parental decision-making in pregnancy (in the context of the law around termination of pregnancy, decision-making in the absence of prenatal sequencing results, and the "importance" of prenatal sequencing results). Recognising both the practical and systemic ethical issues that arise out of delivering a national prenatal sequencing service is crucial. Although specific to the English context, many of the issues we identified are applicable to prenatal sequencing services more broadly. Education of health professionals and parents will help to mitigate some of these ethical issues.

Perinatal grief following a termination of pregnancy for foetal abnormality: the impact of coping strategies.

OBJECTIVE: Pregnancy termination for foetal abnormality (TFA) can have significant psychological repercussions, but little is known about the coping strategies involved in dealing with TFA. This study examined the relationships between women's coping strategies and perinatal grief. METHOD: A total of 166 women completed a survey online. Coping and perinatal grief were measured using the Brief COPE and Short Perinatal Grief Scales. Data were analysed through multiple regression analyses. RESULTS: Despite using mostly adaptive coping strategies, women's levels of grief were high and varied according to obstetric and termination variables. Grief was predicted by behavioural disengagement, venting, planning, religion, self-blame, being recently bereaved, being childless at the time of TFA, not having had children/being pregnant since TFA and uncertainty about the decision to terminate the pregnancy. Acceptance and positive reframing negatively predicted grief. CONCLUSION: Identifying women vulnerable to poor psychological adjustment and promoting coping strategies associated with lower levels of grief may be beneficial. This could be addressed through information provision and interventions such as Cognitive Behavioural Therapy or Acceptance and Commitment Therapy.

Women's experiences of coping with pregnancy termination for fetal abnormality.

Pregnancy termination for fetal abnormality (TFA) can have significant psychological consequences. Most previous research has been focused on measuring the psychological outcomes of TFA, and little is known about the coping strategies involved. In this article, we report on women's coping strategies used during and after the procedure. Our account is based on experiences of 27 women who completed an online survey. We analyzed the data using interpretative phenomenological analysis. Coping comprised four structures, consistent across time points: support, acceptance, avoidance, and meaning attribution. Women mostly used adaptive coping strategies but reported inadequacies in aftercare, which challenged their resources. The study's findings indicate the need to provide sensitive, nondirective care rooted in the acknowledgment of the unique nature of TFA. Enabling women to reciprocate for emotional support, promoting adaptive coping strategies, highlighting the potential value of spending time with the baby, and providing long-term support (including during subsequent pregnancies) might promote psychological adjustment to TFA.

2020 COVID-19-Related Lockdown: the Relationships Between Coping Strategies, Psychological Adjustment and Resilience Among a Non-clinical Sample of British Adults.

To curb COVID-19 infections, the British government enforced a series of lockdowns resulting in restrictions on movement and socialisation. This study assessed which groups may have been at higher risk of emotional distress among a non-clinical sample of British adults. It also examined which coping strategies, if any, related to more positive psychological adjustment and higher resilience scores. A cross-sectional, correlational study was carried out. Using a convenience sample, an online survey was conducted in April-June 2020. One hundred ninety-four participants completed the Brief COPE (coping), the GAD-7 (anxiety), the PHQ-9 (depression), the CD-RISC (resilience), and provided demographic information. Participants used mainly coping strategies considered to be adaptive. They exhibited mild/moderate anxiety and depression symptoms, and moderate resilience scores. However, some individuals displayed significantly higher distress symptoms and lower resilience scores than others, especially those aged under 35 (particularly 18-24), those not working, those who were single and/or childless. Results also show that coping strategies including substance use, behavioural disengagement and self-blame were associated with anxiety and/or depression symptoms, conversely, positive reframing related to lower anxiety symptomatology. Interventions promoting positive reframing may be helpful. Similarly, interventions promoting connection to others, a factor known to enhance resilience, may be beneficial. This is particularly relevant to groups who may be more at risk of psychological distress, such as young individuals.

Why do French women refuse to have Down's syndrome screening by maternal serum testing? A mixed methods study.

PURPOSE: The study aims to analyse the reasons underpinning women's refusal to undertake Down's syndrome screening (DSS) by maternal serum testing (MST). METHODS: A retrospective, mixed methods sequential approach was used. An online survey on women's experience of prenatal testing followed by in-depth interviews were conducted, with women over 18 years old, who had been pregnant within five years prior to the study. Altogether, 1726 responses were gathered, of which 217 related to women who had refused MST. The study compares the women who refused MST with women who accepted it on sociodemographic characteristics, the evolution and experience of the pregnancy, their knowledge about Down's syndrome (DS). It also utilises survey comments and five in-depth interviews to explore, using Thematic Analysis, the reasons for refusing MST. RESULTS: To refuse MST is cognitively demanding. Indeed, women who refused MST were better educated, knew more about prenatal diagnosis sequences and DS than women who accepted it. This position is also emotionally challenging as women's interactions with practitioners can put them in difficult situations, where they have to defend their point of view. Reasons for refusing MST go beyond religious beliefs, negative attitudes towards abortion and/or medicalisation of pregnancy. Rather, women's position appears to be driven by a holistic conception of care-based monitoring, values of inclusivity and a desire to remain in control of their pregnancy. CONCLUSIONS: It is essential that women feel accepted and supported in their choice to refuse MST. Consequently, it is important for professionals to remain cognisant of the diversity of factors underpinning women's decision, the pressure this position generates and the challenges that come with it.

Living through lockdown: A qualitative exploration of individuals' experiences in the UK.

In response to the COVID-19 outbreak, the British government introduced a lockdown resulting in country wide restrictions on movement and socialisation. This research sought to explore individuals' experience of the first lockdown in the UK. A qualitative online survey was conducted between April and June 2020. Using a convenience sample, 29 individuals participated in the study. Data were analysed using thematic analysis. Four themes were identified: 'health and well-being', 'social connectedness and belonging', 'employment and finances' and 'personal and collective values'. Participants' experiences involved both challenges and opportunities. Participants reported challenges to their physical health, mental health, sense of connection to others as well as their employment and finances. However, they also viewed the lockdown as an opportunity to reassess their goals and values, and define a 'new normal' for society. Lockdown restrictions threatened individuals' well-being on many aspects of their lives. As anxiety, loneliness and a compromised grieving process may lead to severe mental health issues, early interventions are needed to prevent these and promote well-being. Interventions may include traditional therapies (e.g. Acceptance and Commitment Therapy), or focus specifically on developing social networks and social support (e.g. mutual help groups). These interventions may also be conducive to the experience of growth reported by some participants.

Philosophy and the clinic: Stigma, respect and shame.

Since its foundation in 2010, the annual philosophy thematic edition of this journal has been a forum for authors from a wide range of disciplines and backgrounds, enabling contributors to raise questions of an urgent and fundamental nature regarding the most pressing problems facing the delivery and organization of healthcare. Authors have successfully exposed and challenged underlying assumptions that framed professional and policy discourse in diverse areas, generating productive and insightful dialogue regarding the relationship between evidence, value, clinical research and practice. These lively debates continue in this thematic edition, which includes a special section on stigma, shame and respect in healthcare. Authors address the problems with identifying and overcoming stigma in the clinic, interactional, structural and phenomenological accounts of stigma and the 'stigma-shame nexus'. Papers examine the lived experience of discreditation, discrimination and degradation in a range of contexts, from the labour room to mental healthcare and the treatment of 'deviancy' and 'looked-after children'. Authors raise challenging questions about the development of our uses of language in the context of care, and the relationship between stigma, disrespect and important analyses of power asymmetry and epistemic injustice. The relationship between respect, autonomy and personhood is explored with reference to contributions from an important conference series, which includes analyses of shame in the context of medically unexplained illness, humour, humiliation and obstetric violence.

Optimising Exome Prenatal Sequencing Services (EXPRESS): a study protocol to evaluate rapid prenatal exome sequencing in the NHS Genomic Medicine Service.

Background: Prenatal exome sequencing (ES) for the diagnosis of fetal anomalies was implemented nationally in England in October 2020 by the NHS Genomic Medicine Service (GMS). is the GMS is based around seven regional Genomic Laboratory Hubs (GLHs). Prenatal ES has the potential to significantly improve NHS prenatal diagnostic services by increasing genetic diagnoses and informing prenatal decision-making. Prenatal ES has not previously been offered routinely in a national healthcare system and there are gaps in knowledge and guidance. Methods: Our mixed-methods evaluation commenced in October 2020, aligning with the start date of the NHS prenatal ES service . Study design draws on a framework developed in previous studies of major system innovation. There are five interrelated workstreams. Workstream-1 will use interviews and surveys with professionals, non-participant observations and documentary analysis to produce in-depth case studies across all GLHs. Data collection at multiple time points will track changes over time. In Workstream-2 qualitative interviews with parents offered prenatal ES will explore experiences and establish information and support needs. Workstream-3 will analyse data from all prenatal ES tests for nine-months to establish service outcomes (e.g. diagnostic yield, referral rates, referral sources). Comparisons between GLHs will identify factors (individual or service-related) associated with any variation in outcomes. Workstream-4 will identify and analyse practical ethical problems. Requirements for an effective ethics framework for an optimal and equitable service will be determined. Workstream-5 will assess costs and cost-effectiveness of prenatal ES versus standard tests and evaluate costs of implementing an optimal prenatal ES care pathway. Integration of findings will determine key features of an optimal care pathway from a service delivery, parent and professional perspective. Discussion: The proposed formative and summative evaluation will inform the evolving prenatal ES service to ensure equity of access, high standards of care and benefits for parents across England.

BACKGROUND: Prenatal exome sequencing is a new test that is offered through the NHS Genomic Medicine Service. Prenatal exome sequencing is offered to pregnant women when ultrasound scans suggest that their baby may have a genetic condition that cannot be diagnosed using standard tests. If a genetic condition is diagnosed this can give parents important information about the outlook for their baby. It can also help with their decisions about whether to continue or end the pregnancy, pregnancy management, post-birth care and future pregnancies. STUDY METHODS: The aim of this study is to evaluate the prenatal exome sequencing service. To do this we will; 1. Study how prenatal exome sequencing is delivered across England using surveys and interviews with professionals.2. Interview parents to ask what they think of prenatal exome sequencing and how support and information could be improved3. Look at how many parents have prenatal exome sequencing and the test results. We will look carefully at who has access to the test and whether any particular groups are less likely to be offered testing.4. Conduct workshops with health professionals and parents to identify any practical or ethical problems that arise when prenatal exome sequencing is offered.5. Look at the cost of prenatal exome sequencing and compare it to the cost of other tests that are offered to diagnose genetic conditions in pregnancy.6. Gather our findings together to make recommendations for best practice. Patient and Public Involvement: A patient and public Involvement, engagement and participation (PPIEP) advisory group will work closely with the research team to design the study and develop study materials. They will also help us understand our findings to make sure the information and recommendations that come out of our research will be helpful to parents and the NHS.

Frames of decision-making in prenatal consultations in England and France. Towards a sociological, relational, and processual approach to autonomy.

RATIONALE, AIMS, AND OBJECTIVES: The article looks at how, during consultations, pregnant women identified as presenting an increased risk of giving birth to a child with an impairment, and practitioners in the field of prenatal diagnosis, decide whether or not to accept the risk of a miscarriage and proceed with a diagnostic examination. METHODS: We conducted 63 observations of consultations in France and 22 in England. Participants were women for whom an elevated risk of abnormality had been identified and the practitioners involved in their care. Our analytical approach consisted in suspending the normative concepts of nondirectiveness and autonomy, and in drawing on Goffman's (1974) notion of "frame" to take account of the experiential and structural aspects that the protagonists bring into the (inter)actions. RESULTS: We identified four frames: medico-scientific expertise, medical authority, religious authority, and compassion. Observation of the ways in which the frames intertwine during consultations revealed configurations that facilitate or hinder the fluidity of the interactions and the decision-making process. The medico-scientific expertise frame, imposed by the guidelines, heavily dominated our observations, but frequently caused distress and misunderstanding. Temporary or sustained use of the compassion and/or medical authority frames could help to repair the discussion and create the conditions that enable women/couples to reach a decision. Variations in configuration highlighted the differences between practitioners in the two countries. CONCLUSIONS: Combining frames allows protagonists to exert reflective abilities and to maintain/restore interactions. The frame analysis promotes a vision of autonomy that is sociological, relational, and processual. The frames are anchored in different structural conditions in England and France.

The role of rumination in adjusting to termination of pregnancy for fetal abnormality: Rumination as a predictor and mediator of posttraumatic growth.

OBJECTIVE: Rumination is important in adjusting to traumatic events. Evidence suggests that deliberate rumination predicts posttraumatic growth (PTG), and mediates the relationship between coping and PTG. This study examined the relationship between rumination and psychological adjustment following pregnancy termination for fetal abnormality (TFA). METHOD: A cross-sectional, online study was conducted with women who had undergone TFA. Women were recruited from a support organization; 161 women completed the Brief COPE, the Perinatal Grief Scale, the Event-Related Rumination Inventory, and the Posttraumatic Growth Inventory. Data were analyzed using regression and mediation analyses. RESULTS: The results show that women engaged in high levels of intrusive and deliberate rumination post-TFA and that intrusive rumination predicted grief. Intrusive and deliberate rumination predicted PTG, although intrusive rumination was a negative predictor of growth. Deliberate rumination mediated the relationship between grief and PTG. It also mediated the path between positive reframing and PTG, and religious coping and PTG, although the mediation effect depended upon the inclusion of the grief variable in the models. CONCLUSIONS: The results confirm the applicability of the PTG model to TFA and support the relevance of rumination to the PTG experience. The results also have clinical implications. Given the positive relationship between deliberate rumination and PTG, promoting interventions that encourage reflective thinking and narrative construction would benefit women post-TFA, particularly those experiencing high levels of distress and/or at risk of complicated grief. (PsycINFO Database Record (c) 2020 APA, all rights reserved).

Exploring the feasibility and acceptability of the contents, design, and functionalities of an online intervention promoting mental health, wellbeing, and study skills in Higher Education students.

BACKGROUND: Substantial numbers of students in Higher Education (HE) are reporting mental health difficulties, such as mild to moderate symptoms of depression and anxiety. Coupled with academic skills challenges, these difficulties can lead to decreased academic performance, low levels of study satisfaction, and eventually drop out. Student support services are facing budget cuts and can only attend to limited numbers of students, usually the ones who present with more severe mental health problems. Moreover, face-to-face contact may not appeal to those students who feel embarrassed by their problems or are afraid of being stigmatised. To address this important problem, an online psychological wellbeing and study skills support system called MePlusMe, has been developed to provide personalised support to its users. In the present study we investigated the feasibility and acceptability of the contents, design, and functionalities of the system. METHODS: An offline version of the system was introduced to 13 postgraduate and undergraduate students (mean age = 31.3 years, SD = 10.25 years; 4 males) in a UK HE Institution, who presented with mild or moderate mental health difficulties. The participants evaluated the design of the system, its functionalities, and contents at Baseline and at Weeks 2, 4, and 8. RESULTS: Participants found the system easy to use, professional, and efficient and its contents non-judgemental and informative. Participants stated that engaging with and practicing the techniques targeted at mental health difficulties led to improvements in positive thinking and self-confidence, while the study skills techniques were practical. Suggestions for further improvement included the development of an app and an option for direct engagement with professionals. CONCLUSIONS: The findings confirmed the acceptability of the contents, design and functionalities of the system, while providing useful information to inform its further development. Next steps include a feasibility study, which will test and quantify the effects on everyday functioning, mood, mental wellbeing, and academic self-efficacy after using the system, and subsequently a randomized controlled trial, which will evaluate its effectiveness.

Posttraumatic growth following pregnancy termination for fetal abnormality: the predictive role of coping strategies and perinatal grief.

BACKGROUND: Research about termination for fetal abnormality (TFA) suggests that it is a traumatic event with potential negative psychological consequences. However, evidence also indicates that following traumatic events individuals may experience growth. Although TFA's negative psychological outcomes are well documented, little is known of the potential for growth following this event. Therefore, the study's objectives were to measure posttraumatic growth (PTG) post-TFA, examine the relationship between PTG, perinatal grief and coping, and determine the predictors of PTG. DESIGN: An online, retrospective survey was conducted with 161 women. METHODS: Eligible participants were women over 18 who had undergone TFA. Participants were recruited from a support organisation. They completed the Brief COPE, Short Perinatal Grief Scale and Posttraumatic Growth Inventory. Data were analysed using regression analyses. RESULTS: Moderate levels of PTG were observed for "relating to others," "personal strengths" and "appreciation of life." "Positive reframing" was a significant predictor of PTG. Despite using mainly "adaptive" coping strategies, women's grief levels were high. CONCLUSIONS: "Adaptive" coping strategies such as, "positive reframing" are relevant to TFA. They may act as protective factors against distress and as foundations for growth, implicating that interventions such as Cognitive Behavioural Therapy, which aim to reframe women's experience, may be beneficial.