Anxiety, depression, somatization and psychological distress before and 2-6 years after a late termination of pregnancy due to fetal anomalies.

BACKGROUND: For many women, a late termination of pregnancy (TOP) can be an enormous psychological burden. Few studies have investigated the long-term psychological impact of late TOP. METHODS: N = 90 women answered a questionnaire containing questions about anxiety, depression and somatization (Brief-Symptom Inventory, BSI-18) shortly before (T1) and 2-6 years after (T4) their late termination of pregnancy. RESULTS: Prior to the late TOP, 57.8% of participants showed above-average levels of overall psychological distress (66.7% anxiety, 51.1% depression, 37.8% somatization). This number decreased significantly over time for all scales of the BSI-18. 2-6 years later, only 10.0% of women still reported above-average levels (17.8% anxiety, 11.1% depression, 10.0% somatization). CONCLUSIONS: Our results support those of previous research showing that late TOP has a substantial psychological impact on those experiencing it in the short-term. In the long-term, most women return to normal levels of psychological distress, although some still show elevated levels. Limitations of the study include monocentric data collection, drop-out between T1 and T4, and the relatively wide range of two to six years after TOP. Further research should be conducted in order to identify factors that impact the psychological processing of the experience.

Overcoming social appearance anxiety among children affected by congenital physical differences.

PURPOSE OF REVIEW: How can we effectively help children with congenital physical differences and their parents in adapting to their situation and overcome social appearance anxiety? How can we improve their self-efficacy in social situations and relationships, as well as increase their self-esteem and self-confidence, which are foundations of assertiveness? RECENT FINDINGS: Several studies have examined the coping skills variability between children. Researchers have attempted to identify the discriminating factors of these differences. Standardized programmes combining Cognitive Behavioural Therapy (CBT) and Social Skills Training (SST) have been developed, but recent studies question their effectiveness. Research is now focusing on third-wave CBT that is promoted actively despite insufficient evidence. SUMMARY: Close examination of the mechanisms by which children develop social appearance anxiety shows that exposure and assertiveness training are key therapeutic tools. As with any other type of social anxiety, exposure allows these children to experience and learn positive, value-enhancing social relationships, in spite of their differences. SST creates a well tolerated exposure environment for whichever kind of curiosity the child may encounter. Therapeutic support requires continued individualized readjustment and a complete understanding of the child's personal history, the complex system in which they are developing, and the mechanisms involved. We suggest to formulate for each child a personalized 'Global Theory', which integrates history and detailed functional analyses.

Sexual health and sexual well-being of women with Mayer-Rokitansky-Kuester-Hauser syndrome after vaginal reconstruction: a qualitative analysis.

BACKGROUND: Contradictory findings on sexual health in women with Mayer-Rokitansky-Kuester-Hauser syndrome (MRKHS) after vaginal reconstruction point toward the need for more profound assessment of this subject, particularly as it is still unclear what constitutes sexual well-being, especially genital self-image or sexual self-esteem, in women with MRKHS and neovagina. AIM: The aim of this qualitative study was to assess individual sexual health and sexual well-being in the context of MRKHS after vaginal reconstruction, with an emphasis on genital self-image, sexual self-esteem, sexual satisfaction, and coping with MRKHS. METHODS: Qualitative semistructured interviews were conducted with women with MRKHS after vaginal reconstruction (n = 10) with the Wharton-Sheares-George surgical method and a matched control group without MRKHS (n = 20). Women were surveyed about their previous and current sexual activities, perception of and attitudes toward their genitals, disclosure to others, coping with the diagnosis, and perception of surgery. Data were analyzed through qualitative content analysis and compared with the control group. OUTCOMES: The primary outcomes of the study were major categories, such as sexual satisfaction, sexual self-esteem, genital self-image, and dealing with MRKHS, as well as subcategories related to the content analysis. RESULTS: Although half the women in the present study indicated that they were coping well with their condition and were satisfied with sexual intercourse, most felt insecure about their neovagina, were cognitively distracted during intercourse, and showed low levels of sexual self-esteem. CLINICAL IMPLICATIONS: A better understanding of expectations and uncertainties regarding the neovagina might help professionals to support women with MRKHS after vaginal reconstruction to increase sexual well-being. STRENGTHS AND LIMITATIONS: This is the first qualitative study focusing on individual aspects of sexual well-being, especially sexual self-esteem and genital self-image, in women with MRKHS and neovagina. The qualitative study indicates good interrater reliability and data saturation. The limitations of this study include the inherent lack of objectivity resulting from the method but also the fact that all the patients had a particular surgical technique, consequently resulting in limited generalizability of these findings. CONCLUSIONS: Our data indicate that integrating the neovagina into the genital self-image is a prolonged process that is essential for sexual well-being and should thus be the focus of sexual counseling.

Impacto psicológico del programa de diagnóstico y tratamiento fetal en las madres / Psychological impact of the fetal diagnosis and treatment program on mothers

El programa de Diagnóstico y Tratamiento Fetal (PDTF) coordina y optimiza el cuidado prenatal y perinatal de pacientes que consultan por alguna anomalía congénita severa (ACS). El servicio de Salud Mental forma parte del equipo interdisciplinario. Objetivo:Evaluar mediante indicadores específicos (estrés en torno a la internación neonatal, depresión, ansiedad, afrontamiento y apoyo social percibido) el impacto psicológico del PDTF en madres de recién nacidos (RN) con ACS internados en Neonatología, comparándolas con un grupo de pacientes con las mismas ACS ingresados por derivación posnatal habitual (DP). Diseño: transversal, comparativo. Población: madres de niños y niñas con ACS internados en neonatología, que cumplan con los criterios de admisión, con consentimiento. Instrumentos de medición: Cuestionario de MOS de Apoyo Social Percibido, Inventario de Depresión de Beck (BDI), Inventario de ansiedad estado/rasgo (STAI), Escala de estrés parental: Unidad de cuidados intensivos (PSS: NICU), Inventario de respuestas de afrontamiento de MOOS (CRI-A). Los datos se analizaron con REDCap y stata 12.0. Resultados: muestra constituida por 83 madres. El 61% tuvo seguimiento en PDTF. No se encontraron diferencias significativas en la edad (M:24a), nivel educativo(55% estudios secundarios o superiores), situación de pobreza (25%), situación conyugal(89% en pareja estable), presencia de red de apoyo(95%). En cuanto a su procedencia el 62% de las madres del PDTF y el 81% de DP provenían de CABA y el Conurbano. Tenían diagnóstico prenatal solo el 31% de las DP. Los diagnósticos más prevalentes de los niños del PDTF fueron gastroquisis (37%) y hernia diafragmática (30%), en los niños con DP cardiopatía (22%) y gastroquisis (19%). Las madres del PDTF presentaron menores niveles de depresión que las de DP. Estas últimas fueron quienes aumentaron en mayor medida su estado de ansiedad con respecto a su rasgo habitual. El apoyo social percibido fue alto en ambos grupos al igual que el afrontamiento por aproximación. Conclusiones: Las intervenciones del programa tuvieron un efecto positivo sobre la ansiedad y la depresión en las madres durante la internación neonatal. (AU)

The Fetal Diagnosis and Treatment Program ( FDTP) coordinates and optimizes prenatal and perinatal care of patients who consult for severe congenital anomalies (SCA). The Mental Health Department is part of the interdisciplinary team. Objective: To evaluate by means of specific indicators (stress around Neonatal Intensive Care Unit (NICU) admission, depression, anxiety, coping, and perceived social support) the psychological impact of the FDTP on mothers of newborns (NB) with SCA admitted to the NICU compared to a group of patients with the same SCA admitted through regular postnatal referral (PR). Design: cross-sectional, comparative study. Population: mothers of children with SCA admitted to the NICU who met the admission criteria and who signed informed consent. Measurement instruments: MOS Social Support Survey, Beck Depression Inventory (BDI), StateTrait Anxiety Inventory (STAI), Parental Stressor Scale: Neonatal Intensive Care Unit (PSS: NICU), Moos Coping Responses Inventory (CRI-A). Data were analyzed using REDCap and Stata 12.0. Results: the sample consisted of 83 mothers. Sixty-one percent were followed up by the FDTP. No significant differences were found in age (M:24y), educational level (55% secondary or higher education), poverty status (25%), marital status (89% in stable relationship), or presence of support network (95%). Regarding their origin, 62% of the FDTP mothers and 81% of the PR mothers came from the city of Buenos Aires and Greater Buenos Aires. Only 31% of the PR children had a prenatal diagnosis. The most prevalent diagnoses in the FDTP children were gastroschisis (37%) and diaphragmatic hernia (30%), and in the PR children, cardiopathy (22%) and gastroschisis (19%). FDTP mothers presented with lower levels of depression than PR mothers. The latter were those who increased their state of anxiety to a greater extent compared to their usual trait. Perceived social support was high in both groups, as was coping by proxy. Conclusions: Program interventions had a positive effect on anxiety and depression in mothers during NICU admission (AU)

[Burden of Affected Persons with MRKH Syndrome: Effect of an Intervention to Support Surgical Neovaginal Placement]. / Belastung von Betroffenen mit MRKH-Syndrom: Effekt einer Intervention zur Unterstützung bei Neovagina-Anlage.

The diagnosis of Mayer-Rokitansky-Küster-Hauser syndrome (MRKHS), a rare variant of female sexual development, is usually made during puberty. The uncertainty in self-image and the impos-sibility of becoming pregnant often lead to considerable stress. Although psychosomatic support is consistently recommended in the literature, there have been only a few studies on the psychological aspects of MRKHS. The aim of the present study is to investigate the quality of life or distress of women with MRKHS undergoing neovaginal surgery and, on the other hand, to evaluate effects of the intervention for support during treatment. Methods In an explorative quasi-experimental pre-post study at a national centre for neovaginal surgery, all patients were offered a psychosomatic intervention (intervention group IG, n=23) and their sexual function (FSFI), psychological distress (PHQ-D) and health-related quality of life (SF-12) were assessed before surgery (t0) and six months after (t1). These were compared with data from a sample collected before and after the intervention period (comparison group VG, n=30). Results While the physical quality of life (SF-12) of both groups was unremarkable at both time points, there was a significant impairment in the psychological quality of life. Both groups (IG, VG) improved from t0 to t1 in their sexual function (FSFI) and showed lower depression scores (PHQ-D). The specific intervention developed was well accepted by those affected and rated as helpful. However, this subjectively perceived effectiveness of the intervention was not reflected by improvement on the quality of life scale (SF-12) and depression scale (PHQ-D). Conclusion Those affected show a clear, clinically relevant distress (SF-12), but this is not reflected in the form of psychological comorbidity (PHQ-D). This apparent discrepancy points to psychologically stable women with acute distress due to the diagnosis of variant sex de-evolution. For them, a low-threshold support service with a supportive character seems to be necessary and helpful during the surgical treatment. The reconstructive therapy for the creation of a neovagina seems to have a positive influence on the psychological quality of life. The fact that pregnancy is still not possible due to the missing uterus could be a reason for not reaching the quality of life of the average population.

Postpartum Depression Risk following Prenatal Diagnosis of Major Fetal Structural Anomalies.

OBJECTIVES: Our primary objective was to evaluate how prenatal diagnosis of a major fetal structural anomaly and resulting pregnancy outcome affected postpartum depression risk, as assessed by the Edinburgh Postnatal Depression Scale (EPDS). Secondary objectives were to review the rate of mental health follow-up and subsequent diagnosis of postpartum depression in screen-positive women. STUDY DESIGN: Singleton pregnancies with prenatal diagnosis of one or more major fetal structural anomalies were ascertained from prospectively maintained databases that included perinatal outcomes and subsequent EPDS responses from January 2010 to May 2018. EPDS scores of 13 or higher were considered positive and prompted referral for mental health follow-up, which was verified by medical record review. Statistical analyses were performed using Student's t-test, χ2, and odds ratios (ORs) with p < 0.05 considered significant. RESULTS: A total of 1,306 women had a prenatal diagnosis of one or more major fetal structural anomalies, 896 (68%) also had a postpartum EPDS screening, and 82 (9.2%) screened positive. Positive EPDS screening was more common with anomalies of multiple organ systems (16.5 vs 7.8%, p = 0.002) and aneuploidy (17.1 vs 9.3%, p = 0.02). Pregnancies complicated by fetal death, neonatal death, and termination for anomaly were significantly more likely to screen positive than those with neonatal survival to discharge (OR, 3.1 [95% confidence interval [CI], 1.6-6.2], 3.0 [95% CI, 1.5-5.8], and 4.4 [95% CI, 2.1-8.9], respectively, p ≤ 0.002). Of the 35 (43%) screen-positive women who attended follow-up appointments with mental health providers, 18 (51%) were diagnosed with a depressive disorder, accounting overall for 22% of those with a positive EPDS screen. CONCLUSION: Among women with a prenatal diagnosis of a major fetal structural anomaly, those experiencing a perinatal loss or pregnancy termination have an increased risk of positive EPDS screen result compared with who have a neonate surviving to discharge. A depressive disorder was diagnosed postpartum in 22% of these women with a positive EPDS screen. Our findings highlight the mental health needs in this vulnerable population. KEY POINTS: · Adverse pregnancy outcome increased positive EPDS screen risk among women with prenatal anomalies.. · A depressive disorder was diagnosed postpartum in 22% of such women with a positive EPDS screen.. · Our findings highlight the mental health needs in this vulnerable population..

The Sexuality of Adolescents and Young Women With MRKH Syndrome: A Qualitative Study.

BACKGROUND: Vaginal agenesis, most commonly referred as Mayer-Rokitansky-Küster-Hauser (MRKH) Syndrome, is mostly diagnosed as primary amenorrhea in teenage girls; although there is plenty of literature concerning the formation of a neovagina, limited research has focused on the psychological burden of this diagnosis to the girls. AIM: To enlighten health providers into the finer aspects of sexuality through the own words and experiences of girls with MRKH under our care. METHODS: Women currently undergoing vaginal dilation or who had completed vaginal dilation within the past year were recruited from February 2019 to January 2020. A gynecologist with training in Sexual Medicine conducted a semistructured interview, which was recorded and then transcribed to identify common themes among interviewees. OUTCOMES: The main outcome explored was the narrative experiences of women with MRKH. RESULTS: 7 women participated, with a mean age of 19.7 (range 17-22 years). None of the girls felt stigmatized, however one reported significant distress at diagnosis, stemming from the attitude of health care professionals and exacerbated by an earlier age at disclosure. All girls accepted that VDT was successful, when it was initiated after they had felt sexual interest and arousal. Exact quantification of the vaginal length at onset, worried 4 as they felt pressurized to achieve a specific length. A few girls reported anxiety over sharing the diagnosis with an intimate partner. All of them pretended at some point to have menses. Childbearing was an important issue for most of the interviewees, but it did not concern them for the time being. All girls had supporting families. However, 5 did not want to share information about VDT with them. One girl reported that openness in discussing genital anatomy, VDT and sexuality, helped her both in completing treatment and adapting in a sexual relationship. CLINICAL IMPLICATIONS: A multidisciplinary team should aim for age-appropriate disclosure and consultation and guide women through VDT and their sexual relations. STRENGTHS AND LIMITATIONS: This is a thorough account of women's perceptions regarding VDT and sexuality in MRKH. However, our conclusions may be limited by the small number of participants. CONCLUSION: Gradual provision of information at disclosure and adjusted timing at VDT may reduce stress in girls with MRKH. Tsitoura A, Michala L. The Sexuality of Adolescents and Young Women With MRKH Syndrome: A Qualitative Study. J Sex Med 2021;18:2012-2019.

Mothers' perception of prenatal counseling following diagnosis of congenital anomalies of the urinary tract.

Congenital abnormalities of the genitourinary tract are the most common sonographically identified malformations. Although prenatal diagnosis seldom modifies perinatal management, it can cause significant anxiety in parents. We aimed to assess how parents perceived the prenatal counseling they had received in our institution. Using a questionnaire, we evaluated by phone the mothers of 78 children diagnosed prenatally with urological tract anomalies between January 2018 and May 2019. Overall, mothers were satisfied and reassured by the prenatal counseling they received, although 19% of the mothers found the time from diagnosis to specialist consultation to be too long. Forty percent of the responders stated that the most important information they needed to hear during the specialist consultation was management and not diagnosis. Specialist counseling should focus on explaining postnatal management, should be offered as soon as possible, and should include practical aspects, especially concerning outpatient care.

Recommendations for neonatologists and pediatricians working in first level birthing centers on the first communication of genetic disease and malformation syndrome diagnosis: consensus issued by 6 Italian scientific societies and 4 parents' associations.

BACKGROUND: Genetic diseases are chronic conditions with relevant impact on the lives of patients and their families. In USA and Europe it is estimated a prevalence of 60 million affected subjects, 75% of whom are in developmental age. A significant number of newborns are admitted in the Neonatal Intensive Care Units (NICU) for reasons different from prematurity, although the prevalence of those with genetic diseases is unknown. It is, then, common for the neonatologist to start a diagnostic process on suspicion of a genetic disease or malformation syndrome, or to make and communicate these diagnoses. Many surveys showed that the degree of parental satisfaction with the methods of communication of diagnosis is low. Poor communication may have short and long-term negative effects on health and psychological and social development of the child and his family. We draw up recommendations on this issue, shared by 6 Italian Scientific Societies and 4 Parents' Associations, aimed at making the neonatologist's task easier at the difficult time of communication to parents of a genetic disease/malformation syndrome diagnosis for their child. METHODS: We used the method of the consensus paper. A multidisciplinary panel of experts was first established, based on the clinical and scientific sharing of the thematic area of present recommendations. They were suggested by the Boards of the six Scientific Societies that joined the initiative: Italian Societies of Pediatrics, Neonatology, Human Genetics, Perinatal Medicine, Obstetric and Gynecological Ultrasound and Biophysical Methodologies, and Pediatric Genetic Diseases and Congenital Disabilities. To obtain a deeper and global vision of the communication process, and to reach a better clinical management of patients and their families, representatives of four Parents' Associations were also recruited: Italian Association of Down People, Cornelia de Lange National Volunteer Association, Italian Federation of Rare Diseases, and Williams Syndrome People Association. They worked from September 2019 to November 2020 to achieve a consensus on the recommendations for the communication of a new diagnosis of genetic disease. RESULTS: The consensus of experts drafted a final document defining the recommendations, for the neonatologist and/or the pediatrician working in a fist level birthing center, on the first communication of genetic disease or malformation syndrome diagnosis. Although there is no universal communication technique to make the informative process effective, we tried to identify a few relevant strategic principles that the neonatologist/pediatrician may use in the relationship with the family. We also summarized basic principles and significant aspects relating to the modalities of interaction with families in a table, in order to create an easy tool for the neonatologist to be applied in the daily care practice. We finally obtained an intersociety document, now published on the websites of the Scientific Societies involved. CONCLUSIONS: The neonatologist/pediatrician is often the first to observe complex syndromic pictures, not always identified before birth, although today more frequently prenatally diagnosed. It is necessary for him to know the aspects of genetic diseases related to communication and bioethics, as well as the biological and clinical ones, which together outline the cornerstones of the multidisciplinary care of these patients. This consensus provide practical recommendations on how to make the first communication of a genetic disease /malformation syndrome diagnosis. The proposed goal is to make easier the informative process, and to implement the best practices in the relationship with the family. A better doctor-patient/family interaction may improve health outcomes of the child and his family, as well as reduce legal disputes with parents and the phenomenon of defensive medicine.

Perspectives of 281 patients with Mayer-Rokitansky-Küster-Hauser Syndrome on uterine transplantation.

OBJECTIVES: To investigate the personal, ethical, and financial perspectives of individuals with Mayer-Rokitansky-Küster-Hauser syndrome (MRKH), a congenital uterine factor infertility condition, regarding uterine transplantation (UTx). DESIGN: Cross-sectional, quantitative survey. SETTING: A 60-item anonymous electronic questionnaire was disseminated via social media sites. PATIENTS: International members of the Beautiful You MRKH Foundation. INTERVENTIONS: None. MAIN OUTCOME MEASURES: The survey contained UTx educational materials followed by questions assessing participants' baseline knowledge, global perceptions, financial concerns, and ethical considerations regarding UTx. RESULTS: We received 281 responses, with a mean participant age of 28.2 ± 9.8 years. After reviewing the education material, most participants considered receiving a UTx (73%), believed that it should be an option for all women with uterine factor infertility (86%), and believed that it should be covered by health insurance (78%). Respondents perceived the benefits of the procedure to outweigh the risks (67%) and considered it to be an ethical procedure (82%). Almost one-half (49%) were willing to spend more than $10,000 out of pocket to receive the procedure. When asked to rank the risk of UTx to self, donor, and fetus in order of personal importance, 21% ranked their own safety last. CONCLUSION: There is a profound desire in the MRKH community for UTx to become more widely available and affordable. MRKH patients may represent a vulnerable population requiring special considerations for informed consent and rigorous evaluation for UTx. Providers caring for MRKH patients should be prepared to provide education about UTx and to thoughtfully engage with news and media outlets to communicate evidence-supported information.

The Missing Uterus, the Missed Diagnosis, and the Missing Care. Mayer-Rokitansky-Küster-Hauser Syndrome in the Lives of Women in Malaysia.

STUDY OBJECTIVE: To explore the effect of the diagnosis of Mayer-Rokitansky-Küster-Hauser (MRKH) syndrome on affected Malaysian women. DESIGN: Qualitative study with a quantitative component. SETTING: Pediatric and adolescent gynecology unit at Universiti Kebangsaan Malaysia Medical Centre, Malaysia. PARTICIPANTS: Twelve women with MRKH. INTERVENTIONS: Face-to-face interview and short questionnaire. MAIN OUTCOME MEASURES: Thematic analysis was used to understand participants' experiences. RESULTS: There were 7 themes identified: (1) delayed diagnoses; (2) doctors' roles and attitudes; (3) gender identity; (4) family and society's response; (5) reaction toward infertility; (6) managing sexual intimacy; and (7) coping mechanisms. Several participants consulted their physicians regarding their primary amenorrhea at an opportunistic setting. When they were referred to the gynecologists, they were dismayed at the lack of information given. The term, "MRKH" plays an important role to ease information-seeking. Participants felt that the doctors were insensitive toward them. Mental illness is a significant complication of MRKH. All participants acknowledged that infertility was the hardest part of the condition. The importance of blood lineage affects their outlook on childbearing options. Some were afraid of sexual intimacy and worried that they would not be able to satisfy their partners. Participants gained support and bonded with their counterparts in the MRKH support group. CONCLUSION: A multidisciplinary approach including medical, psychological, and social support is essential for the management of MRKH. Adequate information and sexual education plays the utmost importance in preventing social-related complications of MRKH.

Reorganizações familiares no contexto do cuidado ao bebê com Síndrome Congênita do Zika Vírus / Reorganizaciones familiares en el contexto del cuidado al bebé con síndrome del Zika Virus / Family restructuring in the context of baby's care with Zika Virus Congenital Syndrome

O artigo trata de experiências de familiares no cuidado de crianças com Síndrome Congênita do Zika Vírus (SCZV) e objetiva analisar o impacto do nascimento do bebê com malformação, as reorganizações psíquicas parentais e seus desdobramentos no cuidado, particularmente o materno. Foi adotada abordagem psicossocial, de base psicanalítica, em diálogo com estudos do campo da Saúde Coletiva. São analisadas narrativas de familiares de 32 encontros grupais realizados em ambulatório de um Instituto de Pesquisa no Rio de Janeiro, Brasil, em 2017. O processo de análise pautou-se na psicossociologia e na análise temática. Angústias, incertezas e sobrecarga marcaram a experiência parental. As dificuldades de desenvolvimento do bebê levaram os pais a um modo singular de lidar com seus filhos e à construção de caminhos de esperança e resistência. O protagonismo materno tornou-se a base para lutas nas áreas social, de saúde e educação. (AU)

El artículo trata sobre experiencias familiares en el cuidado de niños con Síndrome Congénito del Zika Virus y su objetivo es analizar el impacto del nacimiento del bebé con malformación, las reorganizaciones psíquicas parentales y sus desdoblamientos en el cuidado, particularmente el materno. Se adoptó el abordaje psicosocial, de base psicoanalítica, en diálogo con estudios del campo de la Salud Colectiva. Se analizaron narrativas de familiares de 32 encuentros grupales realizados en ambulatorio del Instituto de Investigación en Río de Janeiro, Brasil, en 2017. El proceso de análisis se pautó en la psicosociología y el análisis temático. Angustias, incertidumbres y sobrecarga señalaron la experiencia parental. Las dificultades de desarrollo del bebé llevaron a los padres a un modo singular de lidiar con sus hijos y a la construcción de caminos de esperanza y resistencia. El protagonismo materno se convirtió en la base para luchas en las áreas social, de salud y de educación. (AU)

This paper addresses family members' experiences in the care of children with the Zika Virus Congenital Syndrome. It aims to analyze the impact of the birth of babies with malformations, the parents' psychological restructuring - especially the mothers' - and the implications in the baby's care. A psychosocial, psychoanalytical approach was adopted in dialogue with Public Health studies. We analyzed the narratives of family members who attended 32 group meetings conductedin an outpatient clinic of a Research Institute in Rio de Janeiro, Brazil, in 2017. The analysis was based on psychosociology and thematic analysis. Anguish, uncertainties, and overload marked parental experience. The baby's developmental difficulties led parents to a unique way of dealing with their children and building hope and resistance paths. Maternal leadership became the basis for struggles in the social, health, and education fields. (AU)

Psychodynamic understanding and treatment of patients with congenital disability.

This paper is a follow-up to an article published in 1989 by Cubbage and Thomas. The purpose of that article was to provide a comprehensive analysis of classical Freudian concepts such as castration anxiety, narcissism and self-regard, fear of the loss of love, secondary gain, the death instinct, and ego strength as they related to the treatment and personality development of persons with disabilities. Despite a rigorous review of the literature, an important paper of Freud's with direct and significant implications for persons with congenital or other early-life disabilities was inadvertently overlooked. The purpose of the present paper is to correct that oversight and to provide an almost verbatim synopsis and rehabilitation treatment implications of Freud's (1916) comments on "Exceptions," a character designation that includes persons with congenital or other early-life disabilities that are viewed by the patient as having occurred through no fault of his or her own.

Escuta clínica em um ambulatório de genética: uma experiência extensiva / The clinical listening in a genetic ambulatory: an extension experience / Escucha clínica em amlabolatoria de genética: uma experiencia de extensión

O trabalho busca relatar uma prática extensionista em um Hospital Universitário que teve como objetivo ampliar as ações no cuidado a pessoas com defeitos congênitos (DC) no SUS. Para tanto, apresenta-se a experiência de estudantes de psicologia em ambulatório de genética, ao associar à prática médica ambulatorial a escuta clínica. Discute-se neste artigo a importância da prática extensiva na atenção a pacientes com DC e seus familiares, decorrente da necessidade da interlocução entre medicina e psicologia na clínica contemporânea. Os resultados delimitaram os desafios enfrentados pelas estudantes e os efeitos da prática extensionista em serviço de genética clínica: estabelecimento de um espaço de fala e escuta; complexidade das condições genéticas; problemática do acompanhamento psicológico em serviço ambulatorial; e implicações na formação em Psicologia. Ressalta-se, por fim, a pertinência das reflexões teórico-clínicas acerca de uma primeira experiência de escuta clínica em sua dupla vertente: como dispositivo tanto terapêutico quanto formativo (AU).

This work seeks to report an extension practice in a University Hospital that had the objective to expand the care actions concerning people with birth defects in the Brazil's Unified Health System (SUS). Therefore, it presents the psychology student's experience in a genetic ambulatory, associating the clinical listening to the medical practice. This article also discusses the importance of the extension practice in attention to people with birth defects, through the emerging dialogue between medical practice and the clinical listening. The results set out the challenges faced by the students and the extension practice effects in a genetic service: an effective speaking and listening space; the genetical conditions complexity; the continuity of psychological support issue; and the implications in Psychology formation. Is stands out, lastly, the relevance of theoretical-clinical reflections concerning a first clinical listening experience double-sided: such as a therapeutic disposal and as a formative one (AU).

El trabajo busca reportar una práctica de extensión en un Hospital Universitario que tuvo como objetivo ampliar las acciones de atención a personas con defectos de nacimiento (EC) en el SUS. Para ello, presenta la experiencia en una consulta externa de genética, asociando la escucha clínica a la práctica médica ambulatoria. Este artículo discute la importancia de una práctica extensa en el cuidado de pacientes con EC y sus familias, debido a la necesidad de diálogo entre la medicina y la psicología en la clínica contemporánea. Los resultados delimitaron los desafíos enfrentados por los estudiantes y los efectos de la práctica de extensión en un servicio de genética clínica: establecimiento de un espacio para el habla y la escucha; complejidad de las condiciones genéticas; problemática del seguimiento psicológico en un servicio ambulatorio; e implicaciones para la formación en psicología. Finalmente, se destaca la relevancia de las reflexiones teórico-clínicas acerca de una primera experiencia de escucha clínica en su doble vertiente: como dispositivo terapéutico y formativo (AU).

The Effect of Surgical Treatment on the Quality of Life of Young Women with Breast Asymmetry: A Longitudinal, Cohort Study.

BACKGROUND: Young women with congenital breast asymmetry have impaired psychological well-being and self-esteem. However, little is known regarding the effects of surgical intervention in this population. This cohort study aims to assess postoperative changes in health-related quality of life following surgical treatment of breast asymmetry in young women using a prospective, longitudinal study design. METHODS: From 2008 to 2018, 45 young women undergoing surgical correction of breast asymmetry of benign cause and 101 unaffected, female controls completed the following surveys: Short-Form 36v2, Rosenberg Self-Esteem Scale, and Eating-Attitudes Test-26. Surveys were administered at baseline and at up to 9-year follow-up. RESULTS: Participants with breast asymmetry scored significantly worse than controls at baseline on the Rosenberg Self-Esteem Scale and in two Short-Form 36v2 domains: Social-Functioning and Role-Emotional. Asymmetry participants experienced significant postoperative improvements on the Rosenberg Self-Esteem Scale, and in three Short-Form 36v2 domains: Role-Physical, Social Functioning, and Mental Health. These improvements were sustained for a minimum of 5 years. Postoperatively, asymmetry participants' quality of life was comparable to controls and did not vary by age at the time of surgery, asymmetry severity, or diagnosis. CONCLUSIONS: Surgical treatment of breast asymmetry in young women yields significant and sustained improvements in psychosocial quality of life. Postoperatively, patients returned to a level of functioning commensurate with their peers. CLINICAL QUESTION/LEVEL OF EVIDENCE: Therapeutic, IV.

Psychological experiences of women with pregnancy termination due to fetal anomalies: a qualitative study from the perspective of women, their spouses, and healthcare providers in Iran.

BACKGROUND: Pregnancy termination due to fetal anomalies has many psychological consequences for women. Providing appropriate and desirable care to this group of women and their families plays an important role in the process of coping with this crisis. The aim of the present study was to explore the psychological experiences of women with pregnancy termination due to fetal anomalies. METHODS: This was a qualitative content analysis study. 40 participants were selected through purposeful sampling with maximum variation and data were collected through in-depth individual interviews, field notes, and analyzed using the conventional qualitative content analysis method simultaneously. RESULTS: After analyzing the interview transcripts, the psychological experiences of women with pregnancy termination due to fetal anomalies were classified into two main categories: "emotional reactions coinciding with the diagnosis of fetal anomalies" (consisting of two sub-categories of "disbelief and denial of fetal anomalies" and "feelings of sadness and anger") and " psychological problems following pregnancy termination" (consisting of two sub-categories of " feeling helpless, fearful, anxious, and depressed" and "feeling conscience-stricken, and guilty"). CONCLUSION: According to findings of the present study, exploring and highlighting the experiences of women with pregnancy termination due to fetal anomalies in the psychological dimension can provide a deeper understanding of the needs of these women for providing optimal care at different times and ultimately promote their psychological health.

From Engulfment to Enrichment: Associations Between Illness Representations, Self-Concept, and Psychological Adjustment in Mayer-Rokitansky-Küster-Hauser Syndrome.

STUDY OBJECTIVE: Mayer-Rokitansky-Küster-Hauser syndrome (MRKH) is a female reproductive disorder characterized by the absence or underdevelopment of the uterus, cervix and vagina. Limited research has examined factors related to psychological adjustment in MRKH. This study aimed to explore associations among illness representations, self-concept, psychological distress, and self-esteem in MRKH. DESIGN: Cross-sectional. SETTING: Participants were recruited globally online and from patient meetings. PARTICIPANTS: A total of 263 patients with MRKH (age 16.1-74.4 years; mean = 31.7 years) completed questionnaires. INTERVENTION: None. MAIN OUTCOME MEASURES: Validated self-reported measures of psychological distress and self-esteem (outcomes) and illness representations, self-concept, social support-seeking, and positive affect (hypothesized correlates) were explored in correlation and hierarchical regression analyses, alongside demographic and clinical variables. RESULTS: Younger age and shorter time since diagnosis was associated with higher distress and lower self-esteem. Patients with MRKH reported significantly higher distress and lower self-esteem than the general population. Higher distress and lower self-esteem were associated with higher reported engulfment (defining one's identity or feeling consumed by MRKH) and beliefs about the serious consequences of MRKH, and lower reported MRKH coherence, enrichment (positive changes to self-identity because of MRKH) and positive affect. CONCLUSIONS: Findings suggest that the impact of MRKH on identity plays an important role in adjustment. High perceived coherence and maintenance of positive affect may play a protective role in psychological adjustment. A 12-month follow-up study is planned to examine associations among these variables longitudinally. Baseline data suggest that early availability of psychological support would be beneficial, and interventions focused on identity and psychoeducation about MRKH would be valuable.

[Iatrogenic urethral coitus]. / Iatrogene urethrale coïtus.

This case discussion on urethral coitus in Mayer-Rokitansky-Küster-Hauser syndrome shows that this rare syndrome can have major physical and psychological consequences. Further consideration shows that a lack of common sense and a lack of action concerning sexual history-taking and careful vulvar examination is the reason that an iatrogenic sexual problem arose in this case. This was not the result of the initial denial of a rare diagnosis. Both attention to these aspects during training and supervision are necessary, since other disorders and medical treatments can also have a negative impact on sexuality.