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To explore women's emotional responses throughout the process of terminating a pregnancy for medical reasons.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.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.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.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.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 acti

Background The probability of a pregnancy, live birth, stillbirth and abortion has never been assessed in women with neurofibromatosis 1 (NF1) in a large population-based study. Methods We included 1006 women (15–49 years) registered with NF1 in the Danish National Patient Registry or followed in two national Centers for Rare Diseases and 10 020 women from the Danish population. Information on pregnancy outcomes was ascertained from health registries. Cumulative incidence, mean cumulative count, hazard ratios (HRs) and proportion ratios (PRs) with 95% CIs were calculated. Results The cumulative incidence of a first pregnancy at age 50 years was slightly lower in women with NF1 (74%; 95% CI 70 to 77) than in population comparisons (78%; 95% CI 77 to 79). When all pregnancies were included, two pregnancies were expected per woman at age of 50 years, irrespective of a NF1 diagnosis. The hazard of a pregnancy did not differ between women with NF1 (HR 1.03; 95% CI 0.95 to 1.11) and the comparisons after adjustment for somatic and psychiatric disease. The proportion of pregnancies that resulted in a live birth was 63% (783/1252) among women NF1 and 68% (8432/12 465) among the comparisons, yielding a PR of 0.95 (95% CI 0.90 to 1.00). The proportions of stillbirths (PR 2.83; 95% CI 1.63 to 4.93) and spontaneous abortions (PR 1.40; 95% CI 1.09 to 1.79) were increased in women with NF1. Conclusions A similar hazard for pregnancy was observed for women with NF1 and population comparisons after adjustment for potential medical consequences of NF1. However, women with NF1 experienced more spontaneous abortions and stillbirths., Background The probability of a pregnancy, live birth, stillbirth and abortion has never been assessed in women with neurofibromatosis 1 (NF1) in a large population-based study. Methods We included 1006 women (15-49 years) registered with NF1 in the Danish National Patient Registry or followed in two national Centers for Rare Diseases and 10 020 women from the Danish population. Information on pregnancy outcomes was ascertained from health registries. Cumulative incidence, mean cumulative count, hazard ratios (HRs) and proportion ratios (PRs) with 95% CIs were calculated. Results The cumulative incidence of a first pregnancy at age 50 years was slightly lower in women with NF1 (74%; 95% CI 70 to 77) than in population comparisons (78%; 95% CI 77 to 79). When all pregnancies were included, two pregnancies were expected per woman at age of 50 years, irrespective of a NF1 diagnosis. The hazard of a pregnancy did not differ between women with NF1 (HR 1.03; 95% CI 0.95 to 1.11) and the comparisons after adjustment for somatic and psychiatric disease. The proportion of pregnancies that resulted in a live birth was 63% (783/1252) among women NF1 and 68% (8432/12 465) among the comparisons, yielding a PR of 0.95 (95% CI 0.90 to 1.00). The proportions of stillbirths (PR 2.83; 95% CI 1.63 to 4.93) and spontaneous abortions (PR 1.40; 95% CI 1.09 to 1.79) were increased in women with NF1. Conclusions A similar hazard for pregnancy was observed for women with NF1 and population comparisons after adjustment for potential medical consequences of NF1. However, women with NF1 experienced more spontaneous abortions and stillbirths.

Background: In most countries of the world the only basis for considering a termination of pregnancy is for medical reasons. Depending on the circumstances and determinants of each case, the emotional responses to this event vary greatly. The aim of this study is to map the emotional responses of women when their pregnancy is terminated for medical reasons. Methods: A scoping review was carried out. This covered all types of qualitative and quantitative studies published in English or Spanish since 2014 which included first-person accounts of women's emotional responses when they had a termination. A bibliographic search was made of four databases (CINAHL, Cochrane Library, PsycINFO and Pubmed) along with an additional manual search and backward and forward citation chaining of the studies included. The data were reported in narrative form and the results grouped according to the descriptive characteristics of the study and the emotions involved. Findings: The review process resulted in the inclusion of thirty-four studies. nineteen of these followed a qualitative approach and fifteen used quantitative methodology, with six of them being intervention studies. The emotions found ranged from anxiety and depression to guilt and thankfulness, so various authors stressed the need to improve training for health professionals to provide information, advice and support to the women during the entire process of the termination of pregnancy for medical reasons. Conclusions: The available studies cannot be compared given the variety of designs. The predominant emotions underlying the termination for medical reasons were stress, anxiety and depression. Future research should be carried out using samples of participants covering all causes of termination for medical reasons in a par

Studies on carriers of genetic disorders mainly focus on the process of genetic testing and reproductive choices, and less on how psychosocial aspects of being a carrier change over time. Our study sought to understand more about the psychosocial aspects of hemophilia carrier status, and thereby improve counseling aiming to advance carriers' quality of life and well-being. We analyzed 16 in-depth interviews from women who were carriers of hemophilia and had a son with hemophilia. Three themes emerged: Guilt and sorrow across generations; the choices and future consequences of genetic testing; and preparing to have a child with hemophilia. Experience with being a hemophilia carrier is a process that changes over time while feelings of guilt and sorrow run across generations. The carrier status may create "mothers-in-waiting" living at risk of having a sick child or not. The women think they are prepared to have a son with hemophilia, but experience more sadness than they expect when a son is diagnosed. Our findings suggest that health professionals, especially clinical geneticists and genetic counselors, carriers, families and patient organizations need to be aware that women's experiences of being a carrier of hemophilia changes during the biographical life course. The women may benefit from several rounds of genetic counseling at different stages of life.

Background Parallel to recent advances in prenatal screening for Down syndrome (DS), therapies for different aspects of the condition have become available. As intellectual disability is a key aspect, this is an active area for research. Several groups have hypothesized that prenatal interventions will give better chances at improving cognitive functioning in persons with DS than postnatal treatment. Clinical trials are being developed.Method We first discuss the ethical pros and cons of trying to improve cognitive functioning in persons with DS to see if there are categorical objections to the general idea, and then move on to explore ethically relevant aspects of the prospect of developing fetal therapy for DS (FTDS).Results Only on the basis of a one-dimensional emphasis on the social model of disability would (fetal) therapy aimed at cognitive improvement be inherently problematic.Conclusions Inviting pregnant women to participate in FTDS-research should be based on adequate pre-clinical trials, as well as information aimed at avoiding the so-called 'therapeutic misconception'. Should FTDS be proven to be effective and safe, women carrying a fetus with trisomy 21 who have decided to continue the pregnancy may have a moral obligation to make use of this option. (C) 2016 John Wiley & Sons, Ltd.

Studies on carriers of genetic disorders mainly focus on the process of genetic testing and reproductive choices, and less on how psychosocial aspects of being a carrier change over time. Our study sought to understand more about the psychosocial aspects of hemophilia carrier status, and thereby improve counseling aiming to advance carriers' quality of life and well-being. We analyzed 16 in-depth interviews from women who were carriers of hemophilia and had a son with hemophilia. Three themes emerged: Guilt and sorrow across generations; the choices and future consequences of genetic testing; and preparing to have a child with hemophilia. Experience with being a hemophilia carrier is a process that changes over time while feelings of guilt and sorrow run across generations. The carrier status may create "mothers-in-waiting" living at risk of having a sick child or not. The women think they are prepared to have a son with hemophilia, but experience more sadness than they expect when a son is diagnosed. Our findings suggest that health professionals, especially clinical geneticists and genetic counselors, carriers, families and patient organizations need to be aware that women's experiences of being a carrier of hemophilia changes during the biographical life course. The women may benefit from several rounds of genetic counseling at different stages of life.