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Termination of pregnancy for fetal abnormality: a meta-ethnography of women’s experiences
Abstract
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.
Résumé
En raison des progrès technologiques du diagnostic prénatal, davantage de femmes risquent de devoir interrompre leur grossesse pour une anomalie fłtale. La plupart des recherches portent sur l’adaptation psychologique des femmes à cet événement. Néanmoins, on manque de vision globale de l’expérience des femmes. Cet article rend compte de l’examen systématique d’études qualitatives sur l’expérience de femmes ayant interrompu leur grossesse pour anomalie fłtale. Dans huit bases de données, on a recherché jusqu’en avril 2014 des études révisées par les pairs, rédigées en anglais, fournissant des données primaires ou secondaires, qui utilisaient des méthodes qualitatives identifiables et interprétatives, et offraient une contribution utile à la synthèse. Au total, 4281 fichiers ont été examinés ; 14 réunissaient les critères d’inclusion. Les données ont été synthétisées en utilisant la méta-ethnographie. Quatre thèmes ont été identifiés : un monde brisé, le contrôle perdu et retrouvé, le rôle des professionnels de santé et le pouvoir des cultures. L’interruption de grossesse pour anomalie fłtale peut être considérée comme un événement traumatique auquel les femmes doivent faire face en tant qu’individus, dans leur contact avec la communauté des professionnels de santé et dans le contexte de leur environnement politico-socio-juridique. L’éventail des émotions et des expériences que suscite l’interruption de grossesse pour anomalie fłtale va au-delà du paradigme de l’avortement et englobe un modèle de deuil. Des filières coordonnées de soins sont nécessaires pour permettre aux femmes de prendre leurs propres décisions et de recevoir des soins d’accompagnement.
Resumen
Debido a los avances tecnológicos en el diagnóstico prenatal de anormalidades fetales, más mujeres contemplan la opción de interrumpir un embarazo por este motivo. Gran parte de los estudios disponibles se enfocan en la adaptación psicológica de la mujer a este suceso. Sin embargo, se carece de un entendimiento holista de las experiencias de las mujeres. Este artículo reporta una revisión sistemática de estudios cualitativos de las experiencias de las mujeres con la interrupción del embarazo por anormalidad fetal. En ocho bases de datos, se realizó una búsqueda hasta abril de 2014 de estudios revisados por pares, redactados en inglés, que reportaron datos primarios o secundarios, utilizaron métodos cualitativos identificables e interpretativos, y ofrecían una contribución valiosa a la síntesis. En total, se examinaron 4281 estudios; 14 reunían los criterios de inclusión. Los datos fueron sintetizados utilizando meta-etnografía. Se identificaron cuatro temáticas: un mundo destrozado, perdiendo y volviendo a ganar control, el role de profesionales de la salud y el poder de culturas. La interrupción del embarazo por anormalidad fetal puede considerarse un suceso traumático que las mujeres experimentan como personas individuales, en su contacto con la comunidad de profesionales de la salud, y en el contexto del ambiente político-socio-jurídico. La variedad de emociones y experiencias que genera la interrupción del embarazo por anormalidad fetal va más allá del paradigma de aborto y abarca un modelo de pesar. Se necesitan opciones de servicios coordinados que les permitan a las mujeres tomar sus propias decisiones y recibir atención con apoyo.
... Many studies have documented the importance of empathic support by medical health providers for the resolution of grief and improved self-worth for both PTFA (Geerinck-Vercammen & Kanhai, 2003;Lafarge, Mitchell, & Fox, 2014;McCoyd, 2009a) and perinatal loss (Gold, 2007). Finally, a meta-analytic study indicated that empathy is a moderately strong predictor of therapeutic outcome in psychotherapy (Elliott, Bohart, Watson, & Greenberg, 2011). ...
... Gaining understanding about the anomaly is a crucial step in deciding whether to continue or end the pregnancy (Sandelowski & Barroso, 2005). Knowledge means power in the face of confusion and felt helplessness (Lafarge et al., 2014). However, the therapist should be prepared to empathize with the monumentally difficult obligation for them to make potentially life or death decisions regarding the fate of their child with incomplete, ambiguous information. ...
... Couples confront the decision to continue or terminate the pregnancy with a sense of confusion, ambivalence, and sometimes horror at being placed in this position (Lafarge et al., 2014;McCoyd, 2009b;Sandelowski & Barroso, 2005). Because of the helplessness they experience and the mixed messages society gives around disability and termination, their choices feel so constrained as to be like no choice at all (Ibid;McCoyd, 2007). ...
Pregnancy termination for fetal anomaly is a unique reproductive loss with many issues distinct from spontaneous pregnancy loss, as typically addressed in the current literature. After providing a brief overview of this loss and the impact of stigma, some of the therapeutic tasks particular to this loss will be identified, including absorbing the impact of learning about the anomaly, defining what or who has been lost, deciding whether to continue or terminate the pregnancy, and deciding who to tell what. These therapeutic tasks are discussed using the available research literature, but primarily illustrated through clinical vignettes and therapist–client dialogue. Therapeutic empathy will be demonstrated as both an instrument of healing in itself, as well as a means of realizing other therapeutic goals and interventions such as empowerment, normalization, validation and processing grief and trauma, all crucial elements of doing therapy with this population. Contrasting perspectives of this loss in therapy and the role of the therapist are discussed.
Rapid advances in genetic testing techniques increase the possibility of finding a genetic diagnosis. In the case of couples who underwent a termination of pregnancy (TOP) due to foetal congenital malformations, these techniques might reveal the cause and meet the parent's need to know. The aim of this qualitative study is to explore the experiences of couples with being recontacted after TOP for congenital malformations, as well as the reasons for participating. A retrospective cohort of 31 couples was recontacted for additional genetic testing by sending a standardized letter followed by a telephone call. Fourteen couples (45%) agreed to participate. Data were collected through semi-structured interviews at the genetics department of the hospital (UZ Brussel). Interviews were audiotaped, transcribed and analysed using thematic analysis. We found that, despite the years that passed since the TOP, participants were still interested to perform novel genetic testing. They appreciated that the initiative for recontacting came from the medical team and described it as a sensitive approach. Both intrinsic (searching for answers for themselves and their children) and extrinsic motivators (contributing to science and helping other parents) were identified as important drivers of participation. These results show that, even after several years, many couples are still interested and motivated to be recontacted for further genetic testing. The results of this study can offer guidance in current debate on recontacting patients in the field of genetics.
Objective:
To synthesize the qualitative literature on parental experiences of fetal care to reflect events that happened across the continuum of care, and to better understand parents' positive and negative experiences with care delivery.
Data sources:
Eligible studies published until June 2020 were retrieved from MEDLINE, Embase, Cochrane CENTRAL, EBSCO CINAHL, Web of Science, and ProQuest.
Study eligibility criteria:
Studies must have been: (a) published in English in a peer-reviewed journal or in ProQuest; (b) available in full text; (c) contained a qualitative component; (d) focused on expectant parents' experiences of tertiary, coordinated, multidisciplinary prenatal diagnosis and care related to a fetal anomaly.
Study appraisal and synthesis methods:
Researchers used the Joanna Briggs Institute Critical Appraisal Checklist for Qualitative Research. Meta-study and an interpretive description approach was taken to synthesis the events that happened across the continuum of care and the themes associated with a positive care experience.
Results:
The meta-synthesis included 13 studies and 217 patients from 11 different multidisciplinary fetal diagnosis and intervention practices across North America and Europe. We identified key events that influenced parental experience of fetal care across the continuum. The themes associated with a positive care experience are parents: 1) gaining understanding & feeling understood, 2) realizing agency & control, and 3) finding hope & meaning. We identified aspects of healthcare delivery that served as barriers or facilitators to these positive experiences.
Conclusion:
Understanding the commonalities of the parental experience of fetal care across diverse settings creates a foundation for improving care and better meeting the needs of parents undergoing a painful and life-defining event. Although health outcomes are not always positive, a positive experience of care is possible and can assist parents to cope with their grief, manage their expectations, and engage in their care. The findings of this study illustrate the ways in which healthcare delivery can facilitate or obstruct a positive care experience.
This article explores the perceptions concerning waiting times contained in the stories of women who had abortions during the second and third trimesters of pregnancy, under the Colombian health care system and the terms of Ruling C-355 of 2006, between 2017 and 2018. A qualitative analysis of the interviews revealed that waiting times allowed the collection of data on the multiple temporalities and the women’s complex relations with these institutions, from the time they entered the Entidades Promotoras de Salud (EPS) until the culmination of their Interrupción Voluntaria del Embarazo -IVE- (Voluntary Pregnancy Termination). This article explores the women's perceptions concerning how long they had to wait, during which time, some of the women interviewed felt that the support they received during pregnancy and abortion was satisfactory, and that the waiting times were appropriate. Others, in contrast, perceived that the institutions did not provide them with the necessary information and imposed excessive waiting times that ignored their needs. The analysis of this experience reveals that the women confronted the institutions, which lost their legitimacy, and that their fear of a septic abortion persisted. At the same time, there is evidence of voluntary expressions of waiting that show a non-unidirectional use of time. This paper contributes to the discussion on women who have abortions and their relationship with the Colombian health system, which establishes admission to the EPS as the only way to access this procedure during the second and third trimesters of pregnancy. It is also relevant for studies on temporalities in institutional contexts, as it explores the emergence of voluntary waiting.
Aims:
To explore recollections of pain and pain management during induced abortions.
Design:
Mixed-methods exploratory study in Sweden.
Methods:
A web-based survey was distributed between October 2017 - July 2018 via Swedish discussion boards and social media. Open-ended questions were asked about recollection of pain and pain management, followed by self-reported ratings. The survey was answered by 185 participants, responses were analysed with qualitative content analysis.
Findings:
Recollections of pain intensity illustrated considerable pain and a traumatic event, described in temporal aspects and likened to other painful conditions such as dysmenorrhoea and childbirth. Recollections of pain management illustrated experiences of insufficient treatment of pain and dissatisfaction with pain management, including inefficient treatment and lack of professional attendance. Psychological aspects and consequences illustrated that participants related psychological distress to physical pain, felt unprepared for the physical pain and emphasized the importance of psychological support. Those who experienced intense pain described long-term psychological consequences, including fear of childbirth.
Conclusion:
Physical pain and psychological distress can manifest as considerable challenges during induced abortion. Abortion-related pain is a multidimensional phenomenon involving physical and psychological components that needs to be rigorously treated. When physical pain is unsuccessfully treated, women may experience long-term psychological consequences after an abortion.
Impact:
The results illustrate the importance of holistic abortion care where the multidimensional components of abortion-related pain are considered. Patients need to be offered sufficient preparatory information about potential physical pain and psychological distress. This study indicates that there is room for improvement in pain management. Larger studies are needed.
Aims:
To investigate the readability, comprehensiveness and transparency of web pages about medical abortion in the second trimester of pregnancy.
Design:
A cross-sectional descriptive study of Swedish web pages.
Methods:
Six systematic searches were performed in Google during January 2017. The first 10 hits of each search were screened, resulting in 46 included Swedish web pages. The web pages were analyzed with readability index (LIX) to investigate readability, inductive manifest content analysis to investigate comprehensiveness, and Journal of the Medical Association benchmarks to investigate transparency.
Results:
Median LIX was 29.0 and the largest proportion had LIX 31-40 (N = 17), indicating moderate readability. Visual components were observed in 13 websites. Content analysis resulted in 12 categories illustrating comprehensiveness, but eight of these were only included in ≤50% web pages. With regard to transparency, 29 (63%) adhered to no benchmark, 15 (33%) adhered to one benchmark, and 2 (4%) adhered to two benchmarks. Most web pages were written or reviewed by laypersons (N = 25) and health professionals (N = 11).
Conclusion:
The results indicate that web pages about medical abortion have moderate readability, varied comprehensiveness and poor transparency.
Impact:
Health professionals need to acknowledge the risk of contact with web-based information about poor quality. There is a need for research that aims to increase the chances that patients encounter high-quality web-based information about medical abortion in the second trimester of pregnancy.
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.
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.
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.
This study explores the construction of parental and professional agency in the written accounts by women who have undergone selective abortion (N=8). The analysis of the data was based on qualitative, linguistic discourse analysis. The accounts indicate that the mothers themselves exhibited both strong and weak agency during the process of prenatal diagnosis. The role of the professionals was usually discussed in these accounts concerning only the phases of pregnancy when something out of ordinary had been detected. After the termination, the mothers expressed that they were forced to exhibit strong agency and find ways to cope with their distress unaided due to a lack of professional support. The findings provide new viewpoints for discussing the realization of parental autonomy in prenatal counseling as well as knowledge about the various emotional reactions which prenatal diagnosis and selective abortions evoke.
Abortion is a politicized and contested topic in many countries. In the USA, it is subject to particularly polarized debate
and increasingly stringent policies. Women who terminate a desired preganancy due to diagnosis of foetal anomaly (TFA) are
stuck in the middle of the debate. The debate is framed as “pro-life” vs. “pro-choice” though neither camp fits the experience
of women who TFA. These women report a sense of responsibility and love toward the foetus that they refer to as their baby,
yet they also make use of the choice to terminate the pregnancy when fetal anomaly is diagnosed. This article summarizes the
historical context of abortion in the USA and then reports findings from qualitative data about the impact of the abortion
debate on women who TFA. The social work person-in-environment perspective is shown to be crucial to assisting women in their
coping.
The sociology of emotion is rapidly evolving and has implications for medical settings. Advancing medical technologies create new contexts for decision-making and emotional reaction that are framed by "feeling rules." Feeling rules guide not only behavior, but also how one believes one should feel, thereby causing one to attempt to bring one's authentic feelings into line with perceived feeling rules. Using qualitative data, the theoretical existence of feeling rules in pregnancy and prenatal testing is confirmed. Further examination extends this analysis: at times of technological development feeling rules are often discrepant, leaving patients with unscripted emotion work. Data from a study of women who interrupted anomalous pregnancies indicate that feeling rules are unclear when competing feeling rules are operating during times of societal and technological change. Because much of this occurs below the level of consciousness, medical and psychological services providers need to be aware of potential discrepancies in feeling rules and assist patients in identifying the salient feeling rules. Patients' struggles ease when they can recognize the discrepancies and assess their implications for decision-making and emotional response.
The authors evaluated empirical research addressing the relationship between induced abortion and women's mental health. Two issues were addressed: (a) the relative risks associated with abortion compared with the risks associated with its alternatives and (b) sources of variability in women's responses following abortion. This article reflects and updates the report of the American Psychological Association Task Force on Mental Health and Abortion (2008). Major methodological problems pervaded most of the research reviewed. The most rigorous studies indicated that within the United States, the relative risk of mental health problems among adult women who have a single, legal, first-trimester abortion of an unwanted pregnancy is no greater than the risk among women who deliver an unwanted pregnancy. Evidence did not support the claim that observed associations between abortion and mental health problems are caused by abortion per se as opposed to other preexisting and co-occurring risk factors. Most adult women who terminate a pregnancy do not experience mental health problems. Some women do, however. It is important that women's varied experiences of abortion be recognized, validated, and understood.
We studied psychological outcomes and predictors for adverse outcome in 147 women 4, 8, and 16 months after termination of pregnancy for fetal anomaly.
We conducted a longitudinal study with validated self-completed questionnaires.
Four months after termination 46% of women showed pathological levels of posttraumatic stress symptoms, decreasing to 20.5% after 16 months. As to depression, these figures were 28% and 13%, respectively. Late onset of problematic adaptation did not occur frequently. Outcome at 4 months was the most important predictor of persistent impaired psychological outcome. Other predictors were low self-efficacy, high level of doubt during decision making, lack of partner support, being religious, and advanced gestational age. Strong feelings of regret for the decision were mentioned by 2.7% of women.
Termination of pregnancy for fetal anomaly has significant psychological consequences for 20% of women up to > 1 year. Only few women mention feelings of regret.
Non-compliance is a major problem in the treatment of tuberculosis (TB). This paper assesses the effectiveness of "TB clubs" in improving compliance with TB treatment and their impact in improving societal attitudes associated with TB. The study utilised both quantitative (cohort study) and qualitative (focus group discussion and an in-depth interview) methods. The cohort study was conducted in two rural districts of Northern Ethiopia. A total of 128 sputum positive pulmonary patients were enrolled and followed, 64 in the TB club and 64 in the comparison groups, to determine treatment outcome of anti-TB therapy. The impact of the TB clubs in changing societal attitudes and behaviour associated with TB was assessed using qualitative methods. The treatment completion rate was significantly better (X2=5.41, P<0.02) in the TB club group, 44 out of 64 patients (68.7%) completed treatment in TB club while only 30 of the 64 (46.8%) completed treatment in the comparison group. The defaulter rate was also significantly lower (X2=11.57, P<0.001) in the TB club group 8/64 (12.5%) compared to 26/64 (40.6%) in the comparison group. The qualitative part of the study also demonstrated remarkable changes in patients' understanding of TB, patients' initial reaction to a TB diagnosis, misconceptions as to the cause and treatment of TB, the social isolation and compliance and belief in the modern health care in the TB club area. The complementary results obtained from the quantitative and qualitative components of the study indicate that the TB club approach has a significant impact in improving patients' compliance to anti-TB treatment and in building positive attitudes and practice in the community regarding TB. This study, thus, provides convincing evidences that the TB club approach is useful in delivering TB treatment successfully in rural populations. Further large-scale studies are needed to find out whether this approach is applicable on a national scale and to other
To demonstrate the benefits of applying meta ethnography to the synthesis of qualitative research, by means of a worked example.
Four papers about lay meanings of medicines were arbitrarily chosen. Noblit and Hare's seven-step process for conducting a meta ethnography was employed: getting started; deciding what is relevant to the initial interest; reading the studies; determining how the studies are related; translating the studies into one another; synthesising translations; and expressing the synthesis.
Six key concepts were identified: adherence/compliance; self-regulation; aversion; alternative coping strategies; sanctions; and selective disclosure. Four second-order interpretations (derived from the chosen papers) were identified, on the basis of which four third-order interpretations (based on the key concepts and second-order interpretations) were constructed. These were all linked together in a line of argument that accounts for patients' medicine-taking behaviour and communication with health professionals in different settings. Third-order interpretations were developed which were not only consistent with the original results but also extended beyond them.
It is possible to use meta ethnography to synthesise the results of qualitative research. The worked example has produced middle-range theories in the form of hypotheses that could be tested by other researchers.
Interest in how qualitative health research might be used more widely to inform health policy and medical practice is growing. Synthesising findings from individual qualitative studies may be one method but application of conventional systematic review methodology to qualitative research presents significant philosophical and practical challenges. The aim here was to examine the feasibility of synthesising qualitative research using qualitative methodology including a formative evaluation of criteria for assessing the research to be synthesised. Ten qualitative studies of adult patients' perspectives of diabetes were purposefully selected and questions proposed by the critical appraisal skills programme (CASP) adapted and used to assess papers prior to synthesis. Each study was reviewed independently by two experienced social scientists. The level of agreement between reviewers was determined. Three papers were excluded: one because it turned out not to be qualitative research, one because the quality of the empirical work was poor and one because the qualitative findings reported were also recorded in another paper already included. The synthesis, which had two distinct elements, was conducted using the meta-ethnographic method. Firstly, four papers containing typologies of patient responses to diabetes were synthesised. Secondly, six key concepts were identified from all seven papers as being important in enabling a person with diabetes to achieve a balance in their lives and to attain a sense of well-being and control. These included: time and experience, trust in self, a less subservient approach to care providers, strategic non-compliance with medication, effective support from care providers and an acknowledgement that diabetes is serious. None of the studies included in the synthesis referenced any of the early papers nor did they appear to have taken account of or built upon previous findings. This evaluation confirmed that meta-ethnography can lead to a synthesis and extension of qualitative research in a defined field of study. In addition, from it a practical method of qualitative research assessment evolved. This process is promising but requires further testing and evaluation before it could be recommended for more widespread adoption.
Fetal abnormality incompatible with life is a fact and the options for dealing with it are abortion or birth followed by death. This paper reports a qualitative study of the experience of ten women who had a pregnancy termination in a university hospital in Brazil for fetal abnormality incompatible with life. The women were interviewed approximately 40 days after the procedure. The experience was marked by strong emotions for the women, who had a terrible shock on learning of the diagnosis, which was given between 13 and 25 weeks into their pregnancies. They cried, and experienced fear, despair, anguish, a sense of uselessness and refusal to accept the situation. When they took the decision to terminate their pregnancies, the women experienced sadness, despair and guilt, and all these feelings caused them intense suffering. The killing of the fetus was the most difficult part of the termination for them. Nevertheless, afterwards they were satisfied with the decision taken and believed that it was the correct one, despite the anguish it caused. The inclusion of fetal abnormality incompatible with life in the Brazilian law on pregnancy termination would help to reduce women's suffering and contribute to the provision of supportive care by the health services.
Prenatal diagnostic techniques both enable and force women and couples to make decisions about whether to continue a pregnancy where the fetus has an anomaly. Few studies have explored the decision-making and bereavement processes of women who terminate a desired pregnancy after the discovery of a fetal anomaly. This reports the qualitative results of a study designed to explore these processes while placing them within the context of the societal milieu. Findings are reported as themes that emerged from the 30 intensive interviews conducted with women at varying stages after this experience. These include mythical expectations based on denial that anomaly could occur, misconceptions about the nature of prenatal testing and inaccurate expectations about the experience and duration of grief. Further, the contradictory norms in society are defined as creating additional dilemmas for women as they attempt to gain support and understanding following their loss. Suggestions for how providers may assist women with their grief are incorporated.
To identify short-term factors influencing psychological outcome of termination of pregnancy for fetal anomaly, in order to define those patients most vulnerable to psychopathology.
A prospective cohort of 217 women and 169 men completed standardized questionnaires 4 months after termination. Psychological adjustment was measured by the Inventory of Complicated Grief (ICG), the Impact of Event Scale (IES), the Edinburgh Postnatal Depression Scale (EPDS), and the Symptom Checklist-90 (SCL-90).
Women and men showed high levels of posttraumatic stress (PTS) symptoms (44 and 22%, respectively) and symptoms of depression (28 and 16%, respectively). Determinants of adverse psychological outcome were the following: high level of doubt in the decision period, inadequate partner support, low self-efficacy, lower parental age, being religious, and advanced gestational age. Whether the condition was Down syndrome or another disability was irrelevant to the outcome. Termination did not have an important effect on future reproductive intentions. Only 2% of women and less than 1% of men regretted the decision to terminate.
Termination of pregnancy (TOP) for fetal anomaly affects parents deeply. Four months after termination a considerable part still suffers from posttraumatic stress symptoms and depressive feelings. Patients who are at high risk could benefit from intensified support.
Tuberculosis (TB) is a major contributor to the global burden of disease and has received considerable attention in recent years, particularly in low- and middle-income countries where it is closely associated with HIV/AIDS. Poor adherence to treatment is common despite various interventions aimed at improving treatment completion. Lack of a comprehensive and holistic understanding of barriers to and facilitators of, treatment adherence is currently a major obstacle to finding effective solutions. The aim of this systematic review of qualitative studies was to understand the factors considered important by patients, caregivers and health care providers in contributing to TB medication adherence.
We searched 19 electronic databases (1966-February 2005) for qualitative studies on patients', caregivers', or health care providers' perceptions of adherence to preventive or curative TB treatment with the free text terms "Tuberculosis AND (adherence OR compliance OR concordance)". We supplemented our search with citation searches and by consulting experts. For included studies, study quality was assessed using a predetermined checklist and data were extracted independently onto a standard form. We then followed Noblit and Hare's method of meta-ethnography to synthesize the findings, using both reciprocal translation and line-of-argument synthesis. We screened 7,814 citations and selected 44 articles that met the prespecified inclusion criteria. The synthesis offers an overview of qualitative evidence derived from these multiple international studies. We identified eight major themes across the studies: organisation of treatment and care; interpretations of illness and wellness; the financial burden of treatment; knowledge, attitudes, and beliefs about treatment; law and immigration; personal characteristics and adherence behaviour; side effects; and family, community, and household support. Our interpretation of the themes across all studies produced a line-of-argument synthesis describing how four major factors interact to affect adherence to TB treatment: structural factors, including poverty and gender discrimination; the social context; health service factors; and personal factors. The findings of this study are limited by the quality and foci of the included studies.
Adherence to the long course of TB treatment is a complex, dynamic phenomenon with a wide range of factors impacting on treatment-taking behaviour. Patients' adherence to their medication regimens was influenced by the interaction of a number of these factors. The findings of our review could help inform the development of patient-centred interventions and of interventions to address structural barriers to treatment adherence.
Qualitative synthesis has become more commonplace in recent years. Meta-ethnography is one of several methods for synthesising qualitative research and is being used increasingly within health care research. However, many aspects of the steps in the process remain ill-defined.
We utilized the seven stages of the synthesis process to synthesise qualitative research on adherence to tuberculosis treatment. In this paper we discuss the methodological and practical challenges faced; of particular note are the methods used in our synthesis, the additional steps that we found useful in clarifying the process, and the key methodological challenges encountered in implementing the meta-ethnographic approach. The challenges included shaping an appropriate question for the synthesis; identifying relevant studies; assessing the quality of the studies; and synthesising findings across a very large number of primary studies from different contexts and research traditions. We offer suggestions that may assist in undertaking meta-ethnographies in the future.
Meta-ethnography is a useful method for synthesising qualitative research and for developing models that interpret findings across multiple studies. Despite its growing use in health research, further research is needed to address the wide range of methodological and epistemological questions raised by the approach.
Screening for fetal anomalies in the second trimester of pregnancy is increasingly becoming a part of antenatal care. As a consequence, more pregnant women are learning that the child they are expecting has an anomaly. This article derives from anthropological research in a hospital in Hanoi, Viet Nam, from 2003–2006 that investigated 30 women's experiences after a fetal anomaly was detected. We followed the women from the ultrasound scan through the process of deciding whether to continue their pregnancy or have an abortion. This article focuses on the 17 women who had an abortion and the support they received from health care providers. Their loss of a wanted pregnancy led to feelings of guilt, pain and sadness and fear and uncertainty about being able to have a healthy baby in the future. Two years after the abortion, most of the women had come to terms with the loss, especially those who had had a healthy child since. We recommend that the Vietnamese health care system seeks to ensure that women receive counselling and support that answers their questions about what happened and why. To do this, health care staff need additional training in fetal medicine and counselling skills and sensitisation to the social and emotional challenges that detection of fetal anomalies and second trimester abortion bring to antenatal care.
Résumé
De plus en plus souvent, le dépistage des anomalies fłtales au deuxième trimestre de grossesse fait partie des soins prénatals. Par conséquent, davantage de femmes enceintes apprennent que l'enfant qu'elles portent présente une anomalie. Cet article utilise la recherche anthropologique menée dans un hôpital de Hanoï, Viet Nam, de 2003 à 2006, sur l'expérience de 30 femmes après la détection d'une anomalie fłtale. Nous avons suivi ces femmes depuis l'échographie et tout au long du processus de décision sur la poursuite ou l'interruption de la grossesse. L'article se centre sur les 17 femmes qui ont avorté et le soutien qu'elles ont reçu des soignants. La perte d'une grossesse désirée a suscité des sentiments de culpabilité, de douleur et de tristesse, ainsi que de peur et d'incertitude sur leur capacité future d'avoir un enfant sain. Deux ans après l'avortement, la plupart des femmes avaient surmonté leur perte, particulièrement celles qui avaient depuis mis au monde un enfant en bonne santé. Nous recommandons au système de santé vietnamien de veiller à ce que ces femmes reçoivent des conseils et un soutien répondant à leurs questions sur cet événement et ses raisons. Il faut pour cela mieux former le personnel soignant à la médecine fłtale et aux compétences de conseil, et le sensibiliser aux enjeux émotionnels et sociaux que la détection des anomalies fłtales et l'avortement du deuxième trimestre supposent pour les soins prénatals.
Resumen
La detección sistemática de anomalías fetales en el segundo trimestre del embarazo es cada vez más parte de la atención antenatal. Por consiguiente, más mujeres embarazadas se enteran de que el niño que esperan tiene una anomalía. Este artículo se basa en una investigación antropológica realizada en un hospital de Hanoi, en Vietnam, desde 2003 hasta 2006, sobre las experiencias de 30 mujeres después de detectada una anomalía fetal. Seguimos a las mujeres desde el estudio de ultrasonido a lo largo del proceso de decidir si continuar su embarazo o tener un aborto. Este artículo se centra en las 17 mujeres que tuvieron un aborto y en el apoyo que recibieron de los profesionales de la salud. Su pérdida de un embarazo deseado ocasionó sentimientos de culpabilidad, dolor, tristeza, temor e inseguridad en cuanto a poder tener un bebé saludable en el futuro. Dos años después del aborto, la mayoría de las mujeres habían aceptado la pérdida, especialmente aquéllas que habían tenido un hijo saludable desde entonces. Recomendamos que el sistema de salud vietnamita procure garantizar que las mujeres reciban consejería y apoyo que conteste sus preguntas sobre qué sucedió y por qué. Para ello, el personal de salud necesita recibir más capacitación en medicina fetal y habilidades de consejería y sensibilización a los retos sociales y emocionales que implica la detección de anomalías fetales y el aborto en el segundo trimestre para la atención antenatal.
Termination of pregnancy for fetal abnormality (TOPFA) is a potentially traumatic event that may lead to intense grief symptomatology. The present study included 41 couples who were assessed 1–6 months after TOPFA. No gender differences were found regarding the intensity of trauma symptomatology or the prevalence of clinically relevant trauma symptomatology, present in about a third of the sample. Most couples were congruent regarding trauma symptomatology. Women experienced guilt with significantly more frequency than men. For both genders, guilt influenced both trauma and grief symptomatology. For women only, guilt influenced grief symptomatology indirectly, through trauma symptomatology. Clinical implications are discussed.
Screening for fetal anomalies in the second trimester of pregnancy is increasingly becoming a part of antenatal care. As a consequence, more pregnant women are learning that the child they are expecting has an anomaly. This article derives from anthropological research in a hospital in Hanoi, Viet Nam, from 2003–2006 that investigated 30 women's experiences after a fetal anomaly was detected. We followed the women from the ultrasound scan through the process of deciding whether to continue their pregnancy or have an abortion. This article focuses on the 17 women who had an abortion and the support they received from health care providers. Their loss of a wanted pregnancy led to feelings of guilt, pain and sadness and fear and uncertainty about being able to have a healthy baby in the future. Two years after the abortion, most of the women had come to terms with the loss, especially those who had had a healthy child since. We recommend that the Vietnamese health care system seeks to ensure that women receive counselling and support that answers their questions about what happened and why. To do this, health care staff need additional training in fetal medicine and counselling skills and sensitisation to the social and emotional challenges that detection of fetal anomalies and second trimester abortion bring to antenatal care.
Résumé
De plus en plus souvent, le dépistage des anomalies fłtales au deuxième trimestre de grossesse fait partie des soins prénatals. Par conséquent, davantage de femmes enceintes apprennent que l'enfant qu'elles portent présente une anomalie. Cet article utilise la recherche anthropologique menée dans un hôpital de Hanoï, Viet Nam, de 2003 à 2006, sur l'expérience de 30 femmes après la détection d'une anomalie fłtale. Nous avons suivi ces femmes depuis l'échographie et tout au long du processus de décision sur la poursuite ou l'interruption de la grossesse. L'article se centre sur les 17 femmes qui ont avorté et le soutien qu'elles ont reçu des soignants. La perte d'une grossesse désirée a suscité des sentiments de culpabilité, de douleur et de tristesse, ainsi que de peur et d'incertitude sur leur capacité future d'avoir un enfant sain. Deux ans après l'avortement, la plupart des femmes avaient surmonté leur perte, particulièrement celles qui avaient depuis mis au monde un enfant en bonne santé. Nous recommandons au système de santé vietnamien de veiller à ce que ces femmes reçoivent des conseils et un soutien répondant à leurs questions sur cet événement et ses raisons. Il faut pour cela mieux former le personnel soignant à la médecine fłtale et aux compétences de conseil, et le sensibiliser aux enjeux émotionnels et sociaux que la détection des anomalies fłtales et l'avortement du deuxième trimestre supposent pour les soins prénatals.
Resumen
La detección sistemática de anomalías fetales en el segundo trimestre del embarazo es cada vez más parte de la atención antenatal. Por consiguiente, más mujeres embarazadas se enteran de que el niño que esperan tiene una anomalía. Este artículo se basa en una investigación antropológica realizada en un hospital de Hanoi, en Vietnam, desde 2003 hasta 2006, sobre las experiencias de 30 mujeres después de detectada una anomalía fetal. Seguimos a las mujeres desde el estudio de ultrasonido a lo largo del proceso de decidir si continuar su embarazo o tener un aborto. Este artículo se centra en las 17 mujeres que tuvieron un aborto y en el apoyo que recibieron de los profesionales de la salud. Su pérdida de un embarazo deseado ocasionó sentimientos de culpabilidad, dolor, tristeza, temor e inseguridad en cuanto a poder tener un bebé saludable en el futuro. Dos años después del aborto, la mayoría de las mujeres habían aceptado la pérdida, especialmente aquéllas que habían tenido un hijo saludable desde entonces. Recomendamos que el sistema de salud vietnamita procure garantizar que las mujeres reciban consejería y apoyo que conteste sus preguntas sobre qué sucedió y por qué. Para ello, el personal de salud necesita recibir más capacitación en medicina fetal y habilidades de consejería y sensibilización a los retos sociales y emocionales que implica la detección de anomalías fetales y el aborto en el segundo trimestre para la atención antenatal.
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.
Background:
Over 3% of pregnancies are complicated by a fetal abnormality, of which, approximately 80% are terminated. Despite early screening options, women often present at the cusp of legal limits for termination.
Study design:
A qualitative study was conducted with women terminating pregnancies for fetal abnormalities. Semi-structured interviews explored reasons for termination timing. Analysis utilized latent content and constant comparative methods.
Results:
Of 30 participants between 13+4 and 23+5 weeks gestation, their median age was 35 years, 73.3% were white, 70% were religiously affiliated, and 60% had children. The median time from abnormality identification until termination was 16.5 days (range 2-73). The major themes for termination timing included (1) an abrupt shift in "low-risk" pregnancy perception; (2) challenging medical interactions; (3) an emotional decision-making process; and (4) termination access barriers.
Conclusions:
Timing of termination for fetal abnormalities is attributable to multiple issues. Future research should identify optimal prenatal counseling strategies, address systemic barriers, and identify patient decision-making resources.
Objective:
to describe men's and women's experiences of deciding whether to tell people in their social network, including their children, about their pregnancy loss following a termination for fetal abnormality.
Design:
secondary analysis of qualitative narrative interview data informed by a critical realist approach.
Setting:
respondents were recruited throughout the United Kingdom and interviewed at home between 2004 and 2005.
Participants:
twenty-eight women and nine men who had ended a pregnancy diagnosed with a fetal abnormality and who talked about disclosing or not disclosing the termination to others.
Findings:
few respondents reported having any advice or information about whether or how to disclose their termination. None said they completely concealed their decision from adults in their social network; most said they disclosed selectively, telling close friends and family they had terminated and acquaintances they had miscarried. Most respondents reported telling their young children that the baby had died but did not reveal that they had chosen to end the pregnancy. A minority had not told their existing offspring about the pregnancy loss. Common reasons given for (partially) concealing a termination were: guilt over the decision; to avoid being judged; and to protect other people's feelings. Common reasons for disclosure were: others knew of the pregnancy; needing time off work; needing practical help and/or emotional support during diagnosis and termination; and wanting recognition of their loss. Positive consequences of disclosure were said to be getting more support and less criticism than expected; negative consequences included not getting the anticipated support and empathy; and encountering disapproval. Some respondents felt that concealing their pregnancy loss from their children had resulted in their confusion over the cause of their parents' distress. Some men said they found it hard to access emotional support from their social networks because of expectations about how men 'should' deal with emotions.
Key conclusions and implications for practice:
midwives have to make difficult judgements about what, how and when to provide information when trying to support and advise parents who have ended a pregnancy due to fetal abnormality. Further education and training in this area could be of benefit. Midwives could signpost parents to existing sources of advice around disclosure, taking into account parents' individual preferences, help parents to consider the potential implications of disclosure and concealment and different ways of disclosing. They could also recommend alternative sources of emotional support, bearing in mind that men in particular may find it harder to access support from their social networks.
This study proposed that maternal bereavement in women who experienced miscarriage and women who terminated for fetal abnormality would differ related to the existence of a grief reaction, and to identify the factors that differentiated the two groups. There were no significant grief differences between the miscarriage group and termination group. The groups were then combined to analyze within group factors. Six fixed variables were found to be related to vulnerability for a grief reaction. Factors included: time since the most recent loss; intervention of counseling; employment outside the home; feeling responsible for the perinatal loss; age of the mother as related to guilt; and gestational length of pregnancy. The loss of a wanted pregnancy in the second trimester because of miscarriage or termination for fetal abnormality causes a woman to mourn for both the possibly malformed baby she was carrying and the perfect baby she mentally anticipated. Perinatal loss is unique and troubling because there is usually no visible child to mourn, and no memories of shared life experiences. The death is sudden and often coupled with a lack of recognition by relatives and friends regarding the significance of the loss (Lee & Slade, 1996). Personal stories of women who miscarry or terminate a wanted pregnancy for fetal abnormality reverberate with feelings of loss and emptiness. In addition, women who terminate cite the added emotional pain of guilt for choosing to end a life. This guilt enters into and permeates the woman's mourning process.
The aim of the study was to explore pregnant women's experiences of received information in relation to fetal malformation detected on ultrasound.
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.
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.
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.
To describe how women terminating a pregnancy for fetal or maternal complications decide between surgical (dilation and evacuation [D&E]) and medical abortion.
A qualitative study was conducted among women who underwent D&E or medical abortion before 24 weeks of gestation for fetal anomalies or pregnancy complications at an academic medical center where both methods are offered. Women were interviewed by phone 1 week after the procedure about their counseling experiences and reasons for choosing a particular method. Data were analyzed by 3 researchers using a grounded theory approach, and interviews were stopped upon thematic saturation.
Of the 21 women, 13 (62%) chose D&E and 8 (38%) chose medical abortion. Key themes that emerged from the interviews were valuing the ability to choose the method, and the importance of religious beliefs, abortion attitudes, and emotional coping style. Women's preferences for a method were largely based on their individual emotional coping styles.
Decisions to undergo D&E or medical abortion are highly personal and could affect how women recover after ending a desired pregnancy. Women should be offered counseling about and access to both methods. Understanding these decision processes may help when counseling women faced with these diagnoses and decisions.
To explore attitudes towards conscientious objections among medical students in the UK.
Medical students at St George's University of London, Cardiff University, King's College London and Leeds University were emailed a link to an anonymous online questionnaire, hosted by an online survey company. The questionnaire contained nine questions. A total of 733 medical students responded.
Nearly half of the students in this survey stated that they believed in the right of doctors to conscientiously object to any procedure. Demand for the right to conscientiously object is greater in Muslim medical students when compared with other groups of religious medical students.
Abortion continues to be a contentious issue among medical students and this may contribute to the looming crisis in abortion services over the coming years. This project sheds some light on how future doctors view some of their ethical rights and obligations. Using empirical evidence, it reveals that conscientious objection is an issue in the UK medical student body today. These data could help anticipate problems that may arise when these medical students qualify and practise medicine in the community.
Clearer guidance is needed for medical students about the issue of conscientious objection at medical school.
Advancing technology has made detecting fetal abnormalities in the first and second trimesters a reality. Few families are prepared for the difficult decisions that must be made if their unborn children are diagnosed with a life-limiting condition. Expectant parents are compelled to make decisions on the basis of limited options. A systematic review of the literature is presented with an aim to inform clinicians of parental experiences and outcomes after diagnosis of a fetal anomaly. The review focused on patients given a diagnosis for fetal anomalies for the 40-year period from 1970 to 2010 by using the key words such as fetal anomaly, congenital malformations, pregnancy termination, perinatal palliative care, and perinatal hospice. Regardless of the option taken, women often experienced intense grief reactions. Both giving birth to a child with a life-limiting condition and termination of pregnancy for fetal anomaly can be emotionally traumatic life events, both associated with psychological morbidity. Nonaggressive obstetric management, allowing natural birth without life-sustaining therapeutics, is an option for families. Couples presented with a coordinated perinatal palliative care model may opt to continue their pregnancy. Families who experienced perinatal hospice/palliative care report positive feedback, but more research is needed to explore the psychological outcomes of this choice.
Some abortion policies in the U.S. are based on the notion that abortion harms women's mental health. The American Psychological Association (APA) Task Force on Abortion and Mental Health concluded that first-trimester abortions do not harm women's mental health. However, the APA task force does not make conclusions regarding later abortions (second trimester or beyond) and mental health. This paper critically evaluates studies on later abortion and mental health in order to inform both policy and practice.
Using guidelines outlined by Steinberg and Russo (2009), post 1989 quantitative studies on later abortion and mental health were evaluated on the following qualities: 1) composition of comparison groups, 2) how prior mental health was assessed, and 3) whether common risk factors were controlled for in analyses if a significant relationship between abortion and mental health was found. Studies were evaluated with respect to the claim that later abortions harm women's mental health.
Eleven quantitative studies that compared the mental health of women having later abortions (for reasons of fetal anomaly) with other groups were evaluated. Findings differed depending on the comparison group. No studies considered the role of prepregnancy mental health, and one study considered whether factors common among women having later abortions and mental health problems drove the association between later abortion and mental health.
Policies based on the notion that later abortions (because of fetal anomaly) harm women's mental health are unwarranted. Because research suggests that most women who have later abortions do so for reasons other than fetal anomaly, future investigations should examine women's psychological experiences around later abortions.
The study is a qualitative analysis of 13 interviews with Israeli women who experienced feticide by injection at a late stage of their pregnancy due to fetus abnormality. Neither the public nor health care professionals are fully aware of the implications and significance of feticide to the mother. The goal of this study which was conducted from May 2008 until October 2009 was to understand and give voice to the women's experience. Three themes were discovered: (a) difficult decision making process and outcomes; (b) the unbearable experience of feticide; and (c) feticide as an unspoken experience. Feticide was revealed to incorporate both social and psychological layers; thus, the findings highlight the interface between a personal experience and a social phenomenon. The women's experience is discussed within the Israeli social context, where feticide is a relatively common yet unspoken procedure.
To provide an in-depth account of the role feticide has relative to experiences of late termination of pregnancy (TOP).
Exploratory qualitative interview study. Participants were recruited from three National Health Service (NHS) units that provide secondary and tertiary level fetal medicine services. Data were collected from 36 in-depth interviews, with 12 parents (representing eight cases) who had experienced late TOP for fetal anomaly and 23 health professionals with experience of feticide provision. The qualitative analysis utilised a generative thematic approach, facilitated by Atlas.ti qualitative software package.
Two key themes from the study provide data on how perceptions of feticide were described by those involved in late TOP: (1) feticide is recognised and described as a legitimate clinical procedure and (2) the practice of feticide is conceptualised as difficult but necessary.
For health professionals who provide and facilitate feticide, and for parents making decisions about late TOP and feticide, the procedure is understood as a necessary rather than chosen activity. Parents' perceptions of feticide may differ, and good clinical care must be designed to cope with this variation. For health professionals, feticide seems more readily distinguished from other types of TOP activities and may evoke simultaneous positive and negative perceptions.
The objective of this study was to compare psychiatric morbidity and the course of posttraumatic stress, depression, and anxiety in two groups with severe complications during pregnancy, women after termination of late pregnancy (TOP) due to fetal anomalies and women after preterm birth (PRE). As control group women after the delivery of a healthy child were assessed. A consecutive sample of women who experienced a) termination of late pregnancy in the 2nd or 3rd-trimester (N = 62), or b) preterm birth (N = 43), or c) birth of a healthy child (N = 65) was investigated 14 days (T1), 6 months (T2), and 14 months (T3) after the event. At T1, 22.4% of the women after TOP were diagnosed with a psychiatric disorder compared to 18.5% women after PRE, and 6.2% in the control group. The corresponding values at T3 were 16.7%, 7.1%, and 0%. Shortly after the event, a broad spectrum of diagnoses was found; however, 14 months later only affective and anxiety disorders were diagnosed. Posttraumatic stress and clinician-rated depressive symptoms were highest in women after TOP. The short-term emotional reactions to TOP in late pregnancy due to fetal anomaly appear to be more intense than those to preterm birth. Both events can lead to severe psychiatric morbidity with a lasting psychological impact.
Background:
With increasing technology for screening and diagnostic testing for fetal abnormality in pregnancy, many more pregnant women and couples are faced with the decision to terminate a pregnancy often after receiving diagnostic test results in the second or third trimester of pregnancy. Whilst there is extensive research on people's experience of diagnostic testing and decision-making, there has been less research on people's experiences of decisions they face immediately following their termination.
Objectives:
To describe the experiences of (often unanticipated) decisions that people face in the immediate aftermath of ending a pregnancy following diagnosis of serious fetal abnormality.
Design:
Secondary analysis of narrative qualitative interview data.
Settings:
Participants were recruited throughout the United Kingdom (UK) and interviewed between 2004 and 2006.
Participants:
38 individual mothers, 10 individual fathers and 10 couples who ended a pregnancy following diagnosis of fetal abnormality.
Results:
Parents who had experienced the ending of a pregnancy following diagnosis of fetal abnormality described their experiences, and often distress, of facing painful decisions consequent upon their decision to terminate the pregnancy. What was striking from their accounts was their sense of being unprepared for these decisions. Often they suggested that they had received no information or forewarning of the 'choices' they would have to make, although information designed specifically for people in this situation is available in the UK.
Conclusions:
Many of the decisions that people face in the immediate aftermath of a termination for fetal abnormality are upsetting, and in some circumstances more so because they are not anticipated. Often parents report not receiving information which could be helpful until after these decisions have been made. Health professionals face difficult choices about what issues to raise with patients at this sensitive time, and the optimum time to inform patients of the extra decisions they will face. More research is needed on whether these decisions subsequent to a termination for fetal abnormality have long term implications for people's mental health and their ability to come to terms with their loss.
Claims that women who have elective abortions will experience psychological distress have fueled much of the recent debate on abortion. It has been argued that the emotional sequelae of abortion may not occur until months or years after the event. Despite unclear evidence on such a phenomenon, adverse mental health outcomes of abortion have been used as a rationale for policy-making. We systematically searched for articles focused on the potential association between abortion and long-term mental health outcomes published between January 1, 1989 and August 1, 2008 and reviewed 21 studies that met the inclusion criteria. We rated the study quality based on methodological factors necessary to appropriately explore the research question. Studies were rated as Excellent (no studies), Very Good (4 studies), Fair (8 studies), Poor (8 studies), or Very Poor (1 study). A clear trend emerges from this systematic review: the highest quality studies had findings that were mostly neutral, suggesting few, if any, differences between women who had abortions and their respective comparison groups in terms of mental health sequelae. Conversely, studies with the most flawed methodology found negative mental health sequelae of abortion.
The UK National Institute for Clinical Excellence (NICE) Clinical Guidelines recommend routine prescription of antidepressants for moderate to severe depression. While many patients accept a prescription, one in three do not complete treatment. We carried out a meta-ethnography of published qualitative papers since 1990 whose focus is patients' experience of antidepressant use for depression, in order to understand barriers and facilitators to concordance and inform a larger qualitative study investigating antidepressant use over time. A systematic search of five databases was carried out, supported by hand searches of key journals, writing to first authors and examining reference lists. After piloting three critical appraisal tools, a modified version of the CASP (Critical Appraisal Skills Programme) checklist was used to appraise potentially relevant and qualitative papers. We carried out a synthesis using techniques of meta-ethnography involving translation and re-interpretation. Sixteen papers were included in the meta-ethnography. The papers fall into two related groups: (1) Papers whose focus is the decision-making relationship and the ways patients manage their use of antidepressants, and (2) Papers whose focus is antidepressants' effect on self-concept, ideas of stigma and its management. We found that patients' experience of antidepressants is characterised by the decision-making process and the meaning-making process, conceptualised here as the 'medication career' and 'moral career'. Our synthesis indicates ways in which general practitioners (GPs) can facilitate concordant relationships with patients regarding antidepressant use. First, GPs can enhance the potential for shared decision-making by reviewing patients' changing preferences for involvement in decision-making regularly throughout the patient's 'medication career'. Second, if GPs familiarise themselves with the competing demands that patients may experience at each decision-making juncture, they will be better placed to explore their patients' preferences and concerns--i.e. their 'moral career' of medication use. This may lead to valuable discussion of what taking antidepressants means for patients' sense of self and how their treatment decisions may be influenced by a felt sense of stigma.
A retrospective study was designed to examine the perception of care in women who had experienced a second‐trimester termination of pregnancy (TOP) for a neural tube defect. Women were identified over a 3‐year period, 1983–1985. After appropriate consent, 166 women were visited at home between 4 weeks and 7 months post‐TOP and interviewed by one experienced interviewer using a structured questionnaire with open and closed questions.
The majority (137, 82 per cent) felt satisfied with the care received during screening, prenatal diagnosis, and during the TOP (126, 76 per cent). Patients were less satisfied (63, 38 per cent) with post‐TOP care in hospital. On leaving hospital, the post‐termination sequelae were mentioned to only 25 (15 per cent) patients, which left 135 (81 per cent) confused and bewildered by the post‐partum reactions of their bodies, and by their strong emotions.
After‐care was perceived as unsatisfactory by 113 (68 per cent). One‐quarter (42, 25 per cent) did not have, and were not invited for, a post‐termination appointment and thus did not have an opportunity to ask questions or to discuss the fetus. Eighty‐six (51‐8 per cent) had no visit from any member of the primary health‐care team, yet most would have appreciated such a visit. Suggestions for improved management are presented.
To test the hypothesis that grief responses do not differ between women who terminate their pregnancies for fetal anomalies and women who experience spontaneous perinatal losses.
A case-control study was conducted. Twenty-three women who underwent terminations through the genetics service of a tertiary referral obstetric hospital from January 1991 to April 1992 were assessed psychiatrically 2 months after the termination. The grief responses of these women on the Perinatal Grief Scale and the Beck Depression Inventory were compared to a demographically similar group of women assessed 2 months after they experienced spontaneous perinatal loss. Differences between the groups were assessed through one-way analysis of covariance.
After matching women in the two groups, it became clear that women who terminated for fetal anomalies were significantly older than women in the comparison group, and age was inversely correlated with intensity of grief. Therefore, age was covaried in comparing the grief responses of women in the two groups. Neither statistically significant nor clinically meaningful differences were found in symptomatology between the groups. By the time of assessment, four of 23 women (17%) who terminated their pregnancies were diagnosed with a major depression, and five of 23 (22%) had sought psychiatric treatment.
Women who terminate pregnancies for fetal anomalies experience grief as intense as those who experience spontaneous perinatal loss, and they may require similar clinical management. Diagnosis of a fetal anomaly and subsequent termination may be associated with psychological morbidity.
The objective of the study was to compare psychological responses of women following a pregnancy termination due to ultrasound-detected fetal anomalies (ultrasound group) with the psychological responses of women following a late spontaneous abortion or a perinatal death (perinatal loss group). The assessments, which were performed on four occasions in the year after the life event, included Montgomery and Asberg Depression Rating Scale, Goldberg General Health Questionnaire, Impact of Event Scale, State-Trait Anxiety Inventory and Schedule for Recent Life Events. In the acute phase, a few days after the life event, the women in the ultrasound group reported statistically significantly less depressive symptoms and less intrusion and avoidance symptoms than the perinatal loss group. No differences in psychological responses in the two groups were found at the examinations at approximately 7 weeks, 5 months or 1 year. A statistically significantly higher proportion of women in the ultrasound group reported that they had tried to become pregnant in the following year. A few subjects in each group reported persisting high psychological distress throughout the year, but only one woman fulfilled the criteria of a post-traumatic stress disorder. It is concluded that the long-term psychological stress response in women to pregnancy termination following ultrasonographic detection of fetal anomalies does not differ from the stress responses seen in women experiencing a perinatal loss.
To systematically explore the processes operating within the experience of women undergoing 2nd-trimester pregnancy interruption for fetal anomalies.
Phenomenology was used to conduct the study and analyze audiotaped interviews.
Informants were recruited through a private perinatal practice providing prenatal diagnosis and management to women experiencing high-risk pregnancies at an urban tertiary care center in the Pacific Northwest.
Three women who had undergone pregnancy interruption for fetal anomalies in the 2nd trimester.
The experience of women undergoing 2nd trimester pregnancy interruption can be described as "one day you're pregnant and one day you're not." This summarizes the changes involved in the transition from being a pregnant woman with hopes for the infant and the future to a woman dealing with a loss of innocence. This transition can be described in two intertwined processes entitled "The Hardest Thing We Ever Did" and "Saying Hello and Goodbye."
The decision to interrupt an abnormal pregnancy is a profound experience that permeates all areas of a woman's life. Interventions specific to this type of loss are suggested. Future research is recommended, using a larger sample size to elaborate on concepts identified in this pilot study.
To explore and describe parents' experiences and feelings when faced with a pregnancy subsequent to a pregnancy in which they had to choose whether or not to terminate following the diagnosis of a fetal abnormality.
Exploratory/descriptive study, using the grounded theory method.
Participants were recruited through physicians in northeastern Florida and throughout the United States via an Internet support network.
Participants included a registered nurse, a physician, and 22 parents (13 women and 9 partners) who were interviewed during a subsequent pregnancy.
Mental anguish resulted after a loss due to fetal anomalies. Such parents felt a loss of innocence and a sense of devastation and experienced changes in spousal relationships, fear of hope, isolation, and stigma. This anguish reemerged during a subsequent pregnancy. The parents managed by developing emotional armor, limiting disclosure of the previous and present pregnancy, delaying attachment to the baby, and forming a strong attachment to health care professionals and other people with similar experiences.
Understanding how parents manage the reemergence of mental anguish during a subsequent pregnancy permits health care professionals to assist these parents. Facilitating parents' efforts to develop emotional armor, limit disclosure, delay attachment to the baby, and attach to health care professionals and support groups can mitigate social and psychologic discomfort for these parents.
To ascertain and compare psychological morbidity following first- and second-trimester termination for fetal anomaly.
This was a cohort study of 30 women aged 20-40 years in a north London teaching hospital, 14 of whom had had a first-trimester termination and 16 a second-trimester termination for fetal anomaly. The main outcome measures were questionnaire data (General Health Questionnaire-28, Beck Depression Inventory, Perinatal Grief Scale, Impact of Event Scale (IES)) at 6 weeks, 6 months and 12 months after termination.
There were high levels of psychological distress in both groups at each time point, and for the combined group the mean total scores on the IES remained above the cut-off for the entire study period. Those having second-trimester terminations had a significantly higher level of post-traumatic stress symptomatology 6 weeks after termination (14/16 vs. 6/14; odds ratio = 9.3; 95% CI, 1.5-57.7).
Psychological morbidity following termination of pregnancy for fetal anomaly is prevalent and persistent. Our data suggest that in the short term (as assessed at a 6-week follow-up), second-trimester termination may be more stressful compared with first-trimester termination.
To integrate the findings of qualitative studies of expectant parents receiving positive prenatal diagnosis.
Seventeen published and unpublished reports appearing between 1984 and 2001 and retrieved between December of 2002 and March of 2003. The electronic databases searched include Academic Search Elite, AIDS Information Online (AIDSLINE), Anthropological Index Online, Anthropological Literature, Black Studies, Cumulative Index to Nursing and Allied Health Literature (CINAHL), Digital Dissertations, Dissertation Abstracts Index (DAI), Educational Resource Information Center (ERIC), MEDLINE, PsycInfo, Public Affairs Information Service (PAIS), PubMed, Social Science Abstracts (SocSci Abstracts), Social Science Citation Index, Social Work Abstracts, Sociological Abstracts (Sociofile), Women's Resources International, and Women's Studies.
Qualitative studies involving expectant parents living in the United States of any race, ethnicity, nationality, or class who learned during any time in pregnancy of any fetal impairment by any means of diagnosis were eligible for inclusion.
Metasummary techniques, including the calculation of frequency effect sizes, were used to aggregate the findings. Metasynthesis techniques, including constant comparison analysis and the reciprocal translation of concepts, were used to interpret the findings.
The topical emphasis in the findings is on the termination of pregnancy following positive diagnosis. The thematic emphasis is on the dilemmas of choice and decision making. Positive prenatal diagnosis was for couples an experience of chosen losses and lost choices. Couples managed information to minimize stigmatization and cognitive dissonance.
Existing guidelines for caring for couples after perinatal losses must accommodate the chosen loss experientially defining positive prenatal diagnosis.
The aim of the study was to obtain information on the long-term posttraumatic stress response and grief several years after termination of pregnancy due to fetal malformation. We investigated 83 women who had undergone termination of pregnancy between 1995 and 1999 and compared them with 60 women 14 days after termination of pregnancy and 65 women after the spontaneous delivery of a full-term healthy child. Women 2-7 years after termination of pregnancy were expected to show a significantly lower degree of traumatic experience and grief than women 14 days after termination of pregnancy. Contrary to the hypothesis, however, the results showed no significant intergroup differences with respect to the degree of traumatic experience. With the exception of one subscale (fear of loss), this also applied to the grief reported by the women. However, both groups differed significantly in their posttraumatic stress response from women who had given spontaneous birth to a full-term healthy child. The results indicate that termination of pregnancy is to be seen as an emotionally traumatic major life event which leads to severe posttraumatic stress response and intense grief reactions that are still detectable some years later.
The Posttraumatic Growth Inventory (PTGI), Revised Grief Experience Inventory, and World Assumptions Scale were administered to 111 bereaved parents. The PTGI scores indicate that many bereaved parents report personal growth in domains outlined by L.G. Calhoun and R. G. Tedeschi (2001). Grief intensity was inversely correlated with growth scores. Self-worth was a strong predictor of growth scores, whereas assumptions about the benevolence and meaningfulness of the world were not correlated with growth.
When a baby has an abnormality: a study of parents' experiences
- H Statham
- W Solomou
- J M Green
Statham H, Solomou W, Green JM. When a baby has an
abnormality: a study of parents' experiences. Cambridge:
Centre for Family Research, University of Cambridge, 2001.
Meta-ethnography: Synthesizing qualitative studies
- G W Noblit
- R D Hare
Noblit GW, Hare RD. Meta-ethnography: Synthesizing
qualitative studies. Newbury Park (CA): Sage, 1988.
- C Lafarge
C Lafarge et al. Reproductive Health Matters 2014;22(44):191-201
Journal of Disability Research 2013;15(1):33-44.
doi:10.1080/15017419.2012.660704.
Amendment of law relating to late abortion
Amendment of law relating to late abortion. United
Kingdom Parliament Publications. December 2007,
Column 301. http://www.publications.parliament.uk/pa/
ld200708/ldhansrd/text/71212-0012.htm.