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1.
BMC Womens Health ; 24(1): 255, 2024 Apr 24.
Article in English | MEDLINE | ID: mdl-38658921

ABSTRACT

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.


Subject(s)
Abortion, Induced , Anxiety , Depression , Psychological Distress , Somatoform Disorders , Humans , Female , Pregnancy , Adult , Anxiety/psychology , Depression/psychology , Depression/epidemiology , Somatoform Disorders/psychology , Abortion, Induced/psychology , Surveys and Questionnaires , Stress, Psychological/psychology , Congenital Abnormalities/psychology
2.
J Sex Med ; 20(1): 57-64, 2023 01 14.
Article in English | MEDLINE | ID: mdl-36897238

ABSTRACT

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.


Subject(s)
46, XX Disorders of Sex Development , Congenital Abnormalities , Sexual Health , Humans , Female , Reproducibility of Results , Sexual Behavior/psychology , Vagina/surgery , Coitus , Syndrome , Mullerian Ducts/surgery , Congenital Abnormalities/diagnosis , Congenital Abnormalities/psychology , Congenital Abnormalities/surgery , 46, XX Disorders of Sex Development/diagnosis , 46, XX Disorders of Sex Development/psychology , 46, XX Disorders of Sex Development/surgery
3.
Curr Opin Pediatr ; 35(4): 475-480, 2023 08 01.
Article in English | MEDLINE | ID: mdl-37102622

ABSTRACT

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.


Subject(s)
Adaptation, Psychological , Anxiety , Congenital Abnormalities , Physical Appearance, Body , Anxiety/therapy , Congenital Abnormalities/psychology , Cognitive Behavioral Therapy , Humans , Social Skills , Child , Adolescent
4.
Am J Perinatol ; 39(1): 16-21, 2022 01.
Article in English | MEDLINE | ID: mdl-34758499

ABSTRACT

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..


Subject(s)
Chromosome Disorders , Congenital Abnormalities/diagnosis , Depression, Postpartum , Prenatal Diagnosis/psychology , Adult , Aneuploidy , Chromosome Disorders/diagnosis , Congenital Abnormalities/psychology , Female , Heart Defects, Congenital/diagnosis , Humans , Nervous System Malformations , Pregnancy , Pregnancy Outcome , Risk
5.
Psychother Psychosom Med Psychol ; 72(11): 473-480, 2022 Nov.
Article in German | MEDLINE | ID: mdl-35504296

ABSTRACT

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.


Subject(s)
46, XX Disorders of Sex Development , Congenital Abnormalities , Female , Humans , Quality of Life , Vagina/surgery , 46, XX Disorders of Sex Development/psychology , 46, XX Disorders of Sex Development/surgery , Mullerian Ducts/surgery , Congenital Abnormalities/surgery , Congenital Abnormalities/psychology
6.
J Sex Med ; 18(12): 2012-2019, 2021 12.
Article in English | MEDLINE | ID: mdl-34649813

ABSTRACT

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.


Subject(s)
46, XX Disorders of Sex Development , Congenital Abnormalities , 46, XX Disorders of Sex Development/psychology , 46, XX Disorders of Sex Development/therapy , Adolescent , Adult , Congenital Abnormalities/psychology , Congenital Abnormalities/therapy , Female , Humans , Mullerian Ducts/abnormalities , Sexual Behavior , Sexuality/psychology , Vagina , Young Adult
7.
Perspect Biol Med ; 63(3): 539-543, 2020.
Article in English | MEDLINE | ID: mdl-33416630

ABSTRACT

This commentary considers two informing influences on Pope Francis's support of perinatal hospice care for families facing diagnoses of serious fetal anomalies. Reflecting on the morally formative scriptural narrative of Mary's pregnancy and Jesus's birth and drawing upon an often-repeated idea of Pope Francis's papacy that "time is greater than space," this commentary suggests that Francis's perspective is deeply shaped by an understanding of life as a gift given by God, destined to return to God, and shaped by the invitation to participate in the fullness of our nature through acts of loving accompaniment in the face of grave suffering and loss.


Subject(s)
Catholicism/psychology , Hospice Care/organization & administration , Hospice Care/psychology , Perinatal Care/organization & administration , Congenital Abnormalities/psychology , Congresses as Topic , Female , Humans , Morals , Perinatal Death , Pregnancy , Prenatal Diagnosis/psychology
8.
Reprod Health ; 17(1): 109, 2020 Jul 09.
Article in English | MEDLINE | ID: mdl-32646449

ABSTRACT

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.


Subject(s)
Abortion, Induced/psychology , Congenital Abnormalities/psychology , Health Personnel/psychology , Pregnant Women/psychology , Spouses/psychology , Adult , Anxiety/psychology , Child , Congenital Abnormalities/diagnostic imaging , Depression/psychology , Fear , Female , Humans , Interviews as Topic , Iran , Pregnancy , Qualitative Research
9.
Neonatal Netw ; 39(1): 24-28, 2020 Jan 01.
Article in English | MEDLINE | ID: mdl-31919290

ABSTRACT

When an expectant mother hears the news that her infant has a fetal anomaly, she may feel unsure of the future. A RN recognized the needs of women (and their families) expecting infants with critical fetal diagnoses and reached out to help them through their journey-through the pregnancy, delivery, and beyond. The act of walking alongside the mothers through their experience has grown into a formal program at a specialized children's and womens' hospital in the southeastern United States. This article describes the purpose of the program, how the program came into existence, and what services the program provides to this special population. The program continues to evolve, and the team members have worked with over 169 mothers to date.


Subject(s)
Congenital Abnormalities/diagnosis , Fetal Diseases/diagnosis , Mothers/psychology , Patient Care Team/organization & administration , Prenatal Care/methods , Prenatal Diagnosis/psychology , Congenital Abnormalities/psychology , Female , Humans , Infant, Newborn , Mother-Child Relations , Physician-Patient Relations , Pregnancy , Prenatal Diagnosis/methods , Program Development , Program Evaluation , Truth Disclosure , United States
10.
J Deaf Stud Deaf Educ ; 25(4): 411-420, 2020 09 10.
Article in English | MEDLINE | ID: mdl-32432679

ABSTRACT

This study compared the language, reading, classroom, and quality of life outcomes of primary school-aged children with aural atresia (AA) to matched controls. Participants included 10 children with AA (eight unilateral) and 10 children with typical hearing matched by chronological and mental age. All children with AA had been fitted with an amplification device. Outcome measures included standardized tests of language, reading, and functional communication questionnaires of children's classroom performance and hearing quality of life. The children with AA recorded significantly reduced hearing quality of life. The two groups did not differ on any other measures. The present preliminary findings suggest that children with AA who receive early amplification have similar language, communication, reading, and classroom outcomes as their typically hearing peers. Despite these promising outcomes, however, the children's quality of life is significantly reduced. Further research is needed to further elucidate these findings.


Subject(s)
Congenital Abnormalities/psychology , Ear/abnormalities , Education of Hearing Disabled , Educational Measurement , Case-Control Studies , Child , Education of Hearing Disabled/methods , Educational Measurement/methods , Female , Humans , Language Tests , Male , Quality of Life/psychology , Reading , Surveys and Questionnaires
11.
Am J Psychoanal ; 80(4): 458-471, 2020 Dec.
Article in English | MEDLINE | ID: mdl-33268886

ABSTRACT

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.


Subject(s)
Congenital Abnormalities/psychology , Congenital Abnormalities/rehabilitation , Disabled Persons/psychology , Disabled Persons/rehabilitation , Freudian Theory , Psychotherapy, Psychodynamic , Adult , Humans
12.
Hum Reprod ; 34(9): 1661-1673, 2019 09 29.
Article in English | MEDLINE | ID: mdl-31418785

ABSTRACT

STUDY QUESTION: Do sexual functioning, sexual esteem, genital self-image and psychological and relational functioning in women with Mayer-Rokitansky-Küster-Hauser (MRKH) syndrome differ from a comparison group of women without the condition? SUMMARY ANSWER: In comparison to controls, women with MRKH with a non-surgically or surgically created neovagina did not differ in psychological and relational functioning but reported lower sexual esteem and more negative genital self-image, intercourse-related pain, clinically relevant sexual distress and sexual dysfunction, with sexual esteem levels strongly associated with sexual distress and sexual dysfunction. WHAT IS KNOWN ALREADY: Studies on sexual functioning measured with standardized questionnaires in women with MRKH syndrome compared with women without the condition have yielded contradictory results. Factors associated with sexual functioning in this patient population have rarely been investigated. STUDY DESIGN, SIZE, DURATION: Between November 2015 and May 2017, 54 women with MRKH syndrome with a neovagina and 79 age-matched healthy women without the condition were enrolled in this case-control study. PARTICIPANTS/MATERIALS, SETTING, METHODS: All participants had to be at least 18-years old and had to live in a steady heterosexual relationship. Women with MRKH syndrome were asked to participate by their (former) gynecologists at three university hospitals and by MRKH peer support group. Controls were recruited via advertisement in local newspapers and social media. Standardized questionnaires were administered to assess sexual functioning, sexual esteem, genital self-image and psychological and relational functioning. MAIN RESULTS AND THE ROLE OF CHANCE: Women with MRKH syndrome with a surgically or non-surgically created neovagina reported significantly more pain during intercourse (P < 0.05, d = 0.5), but did not differ in overall sexual functioning from control women. More women with MRKH syndrome reported clinically relevant sexuality-related distress (P < 0.05, odds ratio (OR): 2.756, 95% CI 1.219-6.232) and suffered a sexual dysfunction (P < 0.05, OR: 2.654, 95% CI: 1.088-6.471) in comparison with controls. MRKH women scored significantly lower on the sexual esteem scale (SES) (P < 0.01, d = 0.5) and the female genital self-image scale (FGSIS) (P < 0.01, d = 0.6) than controls. No significant differences were found between the two groups regarding psychological distress, anxiety and depression, global self-esteem and relational dissatisfaction. Sexual esteem was significantly associated with the presence of clinically relevant sexual distress (ß = 0.455, P = 0.001) and suffering a sexual dysfunction (ß = 0.554, P = 0.001) and explained, respectively, 40% and 28% of the variance. LIMITATIONS, REASONS FOR CAUTION: Given the nature of the study focusing on sexual functioning, a potential selection bias cannot be excluded. It is possible that those women with the most severe sexual and/or psychological disturbances did or did not choose to participate in our study. WIDER IMPLICATIONS OF THE FINDINGS: The study results add new data to the very limited knowledge about psychosexual functioning of women with MRKH syndrome and are of importance for more adequate counseling and treatment of these women. STUDY FUNDING/COMPETING INTEREST(S): The research was financially supported by the Dutch Scientific Society of Sexology (Nederlandse wetenschappelijke Vereniging Voor Seksuologie). The funding was unrestricted, and there was no involvement in the conduct of the research. There are no conflicts of interest to declare.


Subject(s)
46, XX Disorders of Sex Development/psychology , Body Image/psychology , Coitus , Congenital Abnormalities/psychology , Interpersonal Relations , Mullerian Ducts/abnormalities , Self Concept , Sexual Dysfunction, Physiological/psychology , Sexuality/psychology , 46, XX Disorders of Sex Development/physiopathology , Adult , Anxiety , Case-Control Studies , Congenital Abnormalities/physiopathology , Depression , Dyspareunia , Female , Humans , Middle Aged , Mullerian Ducts/physiopathology , Netherlands , Surveys and Questionnaires , Vagina/physiopathology
13.
BJOG ; 126(1): 123-127, 2019 Jan.
Article in English | MEDLINE | ID: mdl-30230668

ABSTRACT

OBJECTIVE: Evaluating sexual function and quality of life (QoL) in patients treated with a modified Abbé-McIndoe technique using in vitro cultured autologous vaginal mucosa. DESIGN: Descriptive study. SETTING: Policlinico Umberto I, Sapienza University of Rome. POPULATION: From 2006 to 2016, 39 women affected by Mayer-Rokitansky-Küster-Hauser syndrome (MRKHS) underwent vaginoplasty at our centre using a modified Abbé-McIndoe technique with in vitro cultured autologous vaginal tissue. METHODS: For each patient, vaginal tissue was obtained by full-thickness biopsy of the vaginal vestibule. Following enzymatic dissociation, cells were cultured for 2-3 weeks before the transplant. MAIN OUTCOME MEASURES: Each patient completed two validated questionnaires to quantify sexual function and QoL: the Female Sexual Function Index (FSFI), administered at 12, 36, and 60 months, and the Psychological General Well Being Index (PGWBI) administered at 0, 6, and 36 months after surgery. RESULTS: Twelve months after surgery, 29 patients were engaging in regular sexual activity. The FSFI test results showed a satisfactory sexual function compared to the general population, with median values of 25.85 (range 4.6-30.5) at 12 months, 27.2 (range 4.4-33.6) at 36 months, and 29.6 (range 23.9-33.6) at 60 months. The PGWBI questionnaire showed a median score of 420.5 (range 108-540) before surgery, and 459 (range 252-533) at the 60-month follow-up. CONCLUSIONS: Vaginoplasty performed with the use of autologous vaginal tissue, besides ensuring a long-term satisfying sex life, helps in achieving an improvement in QoL that is maintained over time. TWEETABLE ABSTRACT: Vaginoplasty using in vitro vaginal tissue ensures a satisfactory sexual function and improves quality of life.


Subject(s)
46, XX Disorders of Sex Development/surgery , Congenital Abnormalities/surgery , Gynecologic Surgical Procedures/methods , Mullerian Ducts/abnormalities , Plastic Surgery Procedures/methods , Quality of Life , Vagina/surgery , 46, XX Disorders of Sex Development/psychology , Adolescent , Congenital Abnormalities/psychology , Female , Humans , Mullerian Ducts/surgery , Sexual Behavior/physiology , Sexual Behavior/psychology , Surveys and Questionnaires , Transplantation, Autologous , Treatment Outcome , Young Adult
14.
Prenat Diagn ; 39(8): 575-587, 2019 07.
Article in English | MEDLINE | ID: mdl-30997678

ABSTRACT

OBJECTIVE: To investigate, from the perspective of women and partners, at what stage of a termination of pregnancy (TOP) for fetal anomalies psychosocial care (PSC) is most meaningful, what topics should be discussed, and who should provide PSC. METHOD: A cross-sectional retrospective cohort study was conducted with a consecutive series of 76 women and 36 partners, who completed a semi-structured online questionnaire. RESULTS: Overall, women expressed a greater need for PSC than their partners. Parents expressed a preference for receiving support from a maternal-fetal medicine specialist to help them understand the severity and consequences of the anomalies found and to counsel them in their decision regarding termination. Parents showed a preference for support from mental healthcare providers to help with their emotional responses. Forty-one percent of the women visited a psychosocial professional outside of the hospital after the TOP, indicating a clear need for a well-organised aftercare. CONCLUSION: Different disciplines should work together in a complementary way during the diagnosis, decision making, TOP, and aftercare stages. Parents' need for PSC should be discussed at the beginning of the process. During aftercare, attention should be paid to grief counselling, acknowledgement of the lost baby's existence, and possible future pregnancies.


Subject(s)
Abortion, Induced , Fetus/abnormalities , Parents/psychology , Patient Preference , Psychotherapy/methods , Abortion, Induced/psychology , Abortion, Induced/rehabilitation , Adult , Congenital Abnormalities/pathology , Congenital Abnormalities/psychology , Congenital Abnormalities/therapy , Counseling/methods , Cross-Sectional Studies , Depression/etiology , Depression/therapy , Female , Grief , Humans , Patient Preference/psychology , Patient Preference/statistics & numerical data , Pregnancy , Psychotherapy/statistics & numerical data , Retrospective Studies , Stress Disorders, Post-Traumatic/psychology , Stress Disorders, Post-Traumatic/therapy , Surveys and Questionnaires
15.
Prenat Diagn ; 39(8): 595-602, 2019 07.
Article in English | MEDLINE | ID: mdl-31063215

ABSTRACT

OBJECTIVE: As prenatal diagnostic services expand throughout low-income countries, an important consideration is the appropriateness of these services for patients. In these countries, services now include prenatal ultrasound and occasionally genetic testing. To assess patient interest, we surveyed pregnant patients at a hospital in Addis Ababa, Ethiopia, on their preferences for prenatal testing and termination of affected pregnancies for congenital anomalies and genetic diseases. METHOD: One hundred one pregnant patients were surveyed on their preferences for prenatal testing and termination of affected pregnancies using a survey covering various congenital anomalies and genetic diseases. RESULTS: Eighty-nine percent of patients reported interest in testing for all conditions. Three percent of patients were not interested in any testing. Over 60% of patients reported interest in termination for anencephaly, early infant death, severe intellectual disability, hemoglobinopathy, and amelia. Patients were more likely to express interest in prenatal testing and termination for conditions associated with a shortened lifespan. CONCLUSION: Ethiopian patients were interested in prenatal testing and termination of pregnancy for many conditions. Advancing prenatal diagnostic capacities is a potential strategy for addressing the incidence of congenital anomalies and genetic disease in Ethiopia. Importantly, there exist many factors and technological limitations to consider before implementation.


Subject(s)
Abortion, Eugenic , Congenital Abnormalities/therapy , Fetus/abnormalities , Genetic Diseases, Inborn/therapy , Patient Preference , Prenatal Diagnosis , Abortion, Eugenic/methods , Abortion, Eugenic/psychology , Abortion, Eugenic/statistics & numerical data , Adult , Congenital Abnormalities/epidemiology , Congenital Abnormalities/psychology , Ethiopia/epidemiology , Female , Fetus/diagnostic imaging , Genetic Diseases, Inborn/diagnosis , Genetic Diseases, Inborn/epidemiology , Genetic Testing/methods , Genetic Testing/statistics & numerical data , Humans , Infant, Newborn , Male , Patient Preference/psychology , Patient Preference/statistics & numerical data , Pregnancy , Pregnancy Outcome/epidemiology , Prenatal Diagnosis/methods , Prenatal Diagnosis/psychology , Prenatal Diagnosis/statistics & numerical data , Surveys and Questionnaires , Young Adult
16.
BMC Pregnancy Childbirth ; 19(1): 35, 2019 Jan 17.
Article in English | MEDLINE | ID: mdl-30654759

ABSTRACT

BACKGROUND: Birth defects (BD) are considered a leading cause of childhood morbidity and mortality. Personal, cultural, and health care system barriers may increase the incidence of BD in low and middle income countries. In this study we assessed the knowledge of antenatal mothers on BD, associated factors, and prevention and management. METHODS: Three hundred and fifty (350) antenatal mothers were surveyed using a pretested, self-administered questionnaire. The knowledge on BD was evaluated under 3 categories; knowledge on BD, knowledge on associated factors, and knowledge on prevention and management. The total scores were calculated for each category and converted into percentages. A higher percentage score indicates a high level of knowledge. Descriptive statistics and regression models were used for data analysis. Level of significance was considered as p < 0.05. RESULTS: Mean age of the participants was 28.7 years (SD = 5.2). The age range was 17-44 years. Most of the participants (79%) had studied up to secondary or tertiary education. The average scores of knowledge on BD, associated factors, and prevention and management of BD were 57.6% (95% CI = 52.3-62.9%), 55.1% (95% CI = 49.8-60.4%) and 58.8% (95% CI = 53.5-64.1%) respectively. The average score on the overall total knowledge was 56.4% (95% CI = 51.1-61.7%). Mother's level of education, monthly income of the family and number of clinic visits made by the mother were found to be positively associated with the overall knowledge. About 62% of the participants had taken folic acid (FA) preconceptionally, a major preventive factor of BD associated with the nervous system. Folic acid intake was positively associated with age and educational level, but negatively associated with parity. Media (36.9%) and Public Health Midwives (PHMs) (20%) were found to be the major sources of knowledge on BD, associated factors and prevention in this target group. CONCLUSIONS: The average overall knowledge on BD in this group of antenatal mothers was moderate. Thus, there is a need to improve the knowledge in eligible women to reduce the occurrence of BD, ideally before they become pregnant. Media and PHMs were seem to be the effective and possible resources that can be used to educate the community on BD, associated factors and prevention of BD in Sri Lanka.


Subject(s)
Congenital Abnormalities/psychology , Health Knowledge, Attitudes, Practice , Pregnant Women/psychology , Adolescent , Adult , Cross-Sectional Studies , Female , Humans , Pregnancy , Sri Lanka , Surveys and Questionnaires , Young Adult
17.
BMC Public Health ; 19(1): 507, 2019 May 03.
Article in English | MEDLINE | ID: mdl-31053091

ABSTRACT

BACKGROUND: Extensive application of screening tests for early diagnosis of fetal abnormalities would justify support for women who are facing pregnancy termination due to fetal abnormalities. Considering the lack of available information regarding supportive sources for these people, the present study was conducted to determine the supportive needs of women who have experienced pregnancy termination due to fetal abnormalities. METHODS: The present research was a qualitative study. The participants were selected using a purposeful sampling method with maximum variation. Data were collected through in-depth personal interviews and taking of field notes and were analyzed simultaneously using conventional content analysis. RESULTS: The main categories that appeared in the present study included "support from the husband" with sub-categories of "mental support and necessary accompaniments", "participating in planning for future pregnancy" and "financial support to pay the costs of diagnosis and follow-up", "support from the family and friends" with sub-categories of "helping in taking care of other children", "help in performing daily activities" and "empathy, companionship and necessary support to maintain mental peace" and finally "support from peers" with sub-categories of "communicating with the peers and receiving information from them" and "creating a sense of confidence and hopefulness". CONCLUSIONS: Results of the present study, by determining and highlighting the supportive needs of women who have experienced pregnancy termination due to fetal abnormalities, could be an appropriate basis for providing effective strategies to improve constant participation of the husbands, family members and the peers along with other professional care.


Subject(s)
Abortion, Induced/psychology , Congenital Abnormalities/psychology , Empathy , Pregnant Women/psychology , Social Support , Adult , Family , Female , Humans , Iran , Male , Pregnancy , Prenatal Diagnosis/psychology , Qualitative Research
18.
J Perinat Neonatal Nurs ; 33(4): 301-311, 2019.
Article in English | MEDLINE | ID: mdl-30741752

ABSTRACT

Congenital anomalies are the leading cause of infant death in the United States, accounting for 20% of the annual infant mortality. Advancements in ultrasound diagnostic technology allow practitioners to diagnose fetal anomalies as early as 11 weeks' gestational age, 75% of which are detected in low-risk pregnancies. Communicating a fetal anomaly diagnosis to parents and initiating perinatal end-of-life discussions are difficult for healthcare providers and parents alike. Furthermore, poorly communicated diagnoses have had long-term negative impacts on perinatal grief intensity, which can manifest into lifelong symptoms of adverse psychosocial outcomes such as anxiety, depression, substance abuse, and suicidal ideation. The purpose of this integrative review is to examine the impact of communication in discussing an intrauterine diagnosis of a fetal congenital anomaly on perinatal grief. An integrative review was conducted following the distinct 5-stage process of problem identification, searching the literature, evaluating data, analyzing, and presenting findings. A systematic literature review using the PICO model (Population, Intervention, Comparison, Outcome) and structured after the Preferred Reporting Items for Systematic Review and Meta-Analysis (PRISMA). This framework was completed between November 2017 and May 2018 using PubMed, CINAHL, and PsycINFO databases. Of the 931 article results, 15 satisfied search criteria. Emerging themes included parental need for appropriate time to assimilate and understand the diagnosis, freedom to explore options and alternatives, and the need for clinicians with expert communication skills. The initial conversation communicating the diagnosis of a congenital anomaly impacts expectant parents for the remainder of their lives. Healthcare professionals are in a unique position to either positively or negatively impact the intensity of perinatal grieving reactions. The application of empathetic, sensitive communication may offer solace and promote healing surrounding perinatal end-of-life discussions.


Subject(s)
Congenital Abnormalities , Parents/psychology , Prenatal Diagnosis/psychology , Truth Disclosure/ethics , Congenital Abnormalities/diagnosis , Congenital Abnormalities/psychology , Emotional Intelligence , Humans , Professional-Patient Relations/ethics
19.
J Minim Invasive Gynecol ; 25(3): 498-506, 2018.
Article in English | MEDLINE | ID: mdl-29056568

ABSTRACT

OBJECTIVE: To describe modifications to the double-layer peritoneal pull-down laparoscopic vaginoplasty technique (Davydov operation) and evaluate anatomic and functional outcomes of the new technique, known as the Uncu modification. DESIGN: Case series (Canadian Task Force classification III). SETTING: Tertiary care university hospital. PATIENTS: Women with Mayer-Rokitansky-Küster-Hauser syndrome (MRKHS) who underwent surgery between 2010 and 2016. INTERVENTIONS: Laparoscopic double-layer peritoneal pull-down vaginoplasty with paramesonephric remnant support to the neovagina. MEASUREMENTS AND MAIN RESULTS: Long-term anatomic and functional satisfaction results. Twenty-seven women with MRKHS underwent surgery with the Uncu-modified Davydov procedure. At 1 year after surgery, the mean vaginal length in these patients was 7.91 ± 1.4 cm. Among the 23 patients who had regular vaginal intercourse, the mean functional satisfaction score was 8.65 ± 1.2. One patient had a perioperative bladder injury, and another patient had a rectovaginal fistula at 3 months after the operation. One woman who did not comply with the prescribed postoperative mold exercises had complete closure of the introitus. CONCLUSION: The Uncu modified laparoscopic double-layer peritoneal pull-down technique appears to be an effective and safe surgical management option that is easy to learn and perform by gynecologic surgeons.


Subject(s)
46, XX Disorders of Sex Development/surgery , Congenital Abnormalities/surgery , Laparoscopy/methods , Mullerian Ducts/abnormalities , Vagina/surgery , 46, XX Disorders of Sex Development/psychology , Adult , Coitus/psychology , Congenital Abnormalities/psychology , Female , Gynecologic Surgical Procedures/methods , Humans , Mullerian Ducts/surgery , Patient Satisfaction , Peritoneum/surgery , Postoperative Care , Postoperative Complications/etiology , Postoperative Period , Rectovaginal Fistula/etiology , Rectovaginal Fistula/surgery , Treatment Outcome
20.
Am J Perinatol ; 35(12): 1168-1172, 2018 10.
Article in English | MEDLINE | ID: mdl-29669363

ABSTRACT

OBJECTIVE: The objective of this study was to assess the presence of posttraumatic stress disorder (PTSD) symptoms in parental couples of newborn requiring early surgery at 6 and 12 months after birth. STUDY DESIGN: A longitudinal study was set up from January 2014 to June 2015. As a measure of PTSD, we used the Italian version of the Impact of Event Scale-Revised (IES-R). RESULTS: Thirty-four couples form the object of the study. At 6 months, half of mothers (52.9%) and fathers (44.1%) reported traumatic stress symptoms above the clinical cutoff. Percentages remained stable at 12 months. When parental gender and length of follow-up were compared with two-factor analysis of variance, none had an impact on IES-R score, nor an interaction between these factors was found. A significant correlation of IES-R total score was present within the couple both at 6 and 12 months (6 months-r: 0.6842, p < 0.0001 and 12 months-r: 0.4045, p = 0.0177). CONCLUSION: Having a child with a repaired malformation represents a complex prolonged stressful situation with persistent burden for both parents who are at high risk of developing PTSD symptoms.


Subject(s)
Congenital Abnormalities/psychology , Congenital Abnormalities/surgery , Fathers/psychology , Mothers/psychology , Stress Disorders, Post-Traumatic/etiology , Adult , Female , Humans , Infant , Longitudinal Studies , Male , Psychiatric Status Rating Scales , Surveys and Questionnaires
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