RESUMO
OBJECTIVES: These were to: (1) produce national and subnational estimates of the sex ratio at birth (SRB) and number of missing girl births in Nepal and (2) understand the socioeconomic correlates of these phenomena. DESIGN: Observational secondary data analysis of (1) the 2011 population census of Nepal and (2) the Nepal Demographic and Health Survey (DHS) 2006, 2011 and 2016. SETTING: Nepal. PARTICIPANTS: (1) 2 567 963 children age 0-4 in the 2011 population census and (2) 27 329 births recorded in DHSs. PRIMARY AND SECONDARY OUTCOMES: We estimate the SRB, and number and proportion of missing girls in the year and 5 years before the census by district. We also calculate conditional sex ratios (the SRB dependant on parity and sex of previous children) by province, time, education and wealth. RESULTS: We find that 11 districts have significantly skewed sex ratios at birth in the 2011 population census, with the highest SRBs observed in Arghakhanchi (SRB=127) and Bhaktapur (SRB=123). 22 540 girl births were missing in the 5 years before the 2011 population census. Sex-selective abortion is geographically concentrated, especially in the Kathmandu Valley and Lumbini Province, with 53% of missing girls found in only 11 out of 75 districts.DHS data confirm this, with elevated conditional sex ratios observed in Bagmati and Lumbini Provinces; conditional sex ratios where previous births were all female also became more skewed over time. Skewed sex ratios are concentrated among wealthier more educated groups. CONCLUSIONS: It is clear that sex selection will persist and develop in Nepal unless a coordinated effort is made to address both the demand for and supply of this service. Policies should be holistic and encompass economic and legal gender equity, and strengthen monitoring mechanisms to prevent technology misuse, without jeopardising the right to safe, free and legal abortion.
Assuntos
Censos , Razão de Masculinidade , Aborto Eugênico , Criança , Pré-Escolar , Feminino , Humanos , Lactente , Recém-Nascido , Nepal/epidemiologia , Gravidez , PrevalênciaRESUMO
OBJECTIVE: To explore fetal medicine specialists' experiences of caring for parents following a diagnosis of fatal fetal anomaly (FFA) during the implementation of termination of pregnancy (TOP) for FFA for the first time. DESIGN: Qualitative study. SETTING: Fetal medicine units in the Republic of Ireland. POPULATION: Ten fetal medicine specialists from five of the six fetal medicine units. METHODS: nvivo 12 assisted in the thematic analysis of semi-structured in-depth face-to-face interviews. MAIN OUTCOME MEASURES: Fetal medicine specialists' experiences of prenatal diagnosis and holistic management of pregnancies complicated by FFA. RESULTS: Four themes were identified: 'not fatal enough', 'interactions with colleagues', 'supporting pregnant women' and 'internal conflict and emotional challenges'. Fetal medicine specialists feared getting an FFA diagnosis incorrect because of media scrutiny and criminal liability associated with the TOP for FFA legislation. Challenges with the ambiguous and 'restrictive' legislation were identified that 'ostracised' severe anomalies. Teamwork was essential to facilitate opportunities for learning and peer support; however, conflict with colleagues was experienced regarding the diagnosis of FFA, the provision of feticide and palliative care to infants born alive following TOP for FFA. Participants reported challenges implementing TOP for FFA, including the absence of institutional support and 'stretched' resources. Fetal medicine specialists experienced internal conflict and a psychological burden providing TOP for FFA, but did so to 'provide full care for women'. CONCLUSIONS: Our study identified challenges regarding the suitability of the Irish legislation for TOP for FFA and its rapid introduction into clinical practice. It illustrates the importance of institutional and peer support, as well as the need for supportive management, in the provision of a new service. TWEETABLE ABSTRACT: The implementation of termination services for fatal fetal anomaly is complex and requires institutional support.
Assuntos
Aborto Eugênico , Atitude do Pessoal de Saúde , Anormalidades Congênitas , Perinatologia , Cuidado Pré-Natal , Relações Profissional-Paciente , Aborto Eugênico/ética , Aborto Eugênico/psicologia , Feminino , Humanos , Relações Interprofissionais , Entrevistas como Assunto , Irlanda , Perinatologia/ética , Gravidez , Cuidado Pré-Natal/ética , Cuidado Pré-Natal/organização & administração , Cuidado Pré-Natal/psicologia , Relações Profissional-Paciente/ética , Pesquisa QualitativaRESUMO
STUDY QUESTION: What are the long term trends in the total (live births, fetal deaths, and terminations of pregnancy for fetal anomaly) and live birth prevalence of neural tube defects (NTD) in Europe, where many countries have issued recommendations for folic acid supplementation but a policy for mandatory folic acid fortification of food does not exist? METHODS: This was a population based, observational study using data on 11,353 cases of NTD not associated with chromosomal anomalies, including 4162 cases of anencephaly and 5776 cases of spina bifida from 28 EUROCAT (European Surveillance of Congenital Anomalies) registries covering approximately 12.5 million births in 19 countries between 1991 and 2011. The main outcome measures were total and live birth prevalence of NTD, as well as anencephaly and spina bifida, with time trends analysed using random effects Poisson regression models to account for heterogeneities across registries and splines to model non-linear time trends. SUMMARY ANSWER AND LIMITATIONS: Overall, the pooled total prevalence of NTD during the study period was 9.1 per 10,000 births. Prevalence of NTD fluctuated slightly but without an obvious downward trend, with the final estimate of the pooled total prevalence of NTD in 2011 similar to that in 1991. Estimates from Poisson models that took registry heterogeneities into account showed an annual increase of 4% (prevalence ratio 1.04, 95% confidence interval 1.01 to 1.07) in 1995-99 and a decrease of 3% per year in 1999-2003 (0.97, 0.95 to 0.99), with stable rates thereafter. The trend patterns for anencephaly and spina bifida were similar, but neither anomaly decreased substantially over time. The live birth prevalence of NTD generally decreased, especially for anencephaly. Registration problems or other data artefacts cannot be excluded as a partial explanation of the observed trends (or lack thereof) in the prevalence of NTD. WHAT THIS STUDY ADDS: In the absence of mandatory fortification, the prevalence of NTD has not decreased in Europe despite longstanding recommendations aimed at promoting peri-conceptional folic acid supplementation and existence of voluntary folic acid fortification. FUNDING, COMPETING INTERESTS, DATA SHARING: The study was funded by the European Public Health Commission, EUROCAT Joint Action 2011-2013. HD and ML received support from the European Commission DG Sanco during the conduct of this study. No additional data available.
Assuntos
Suplementos Nutricionais/estatística & dados numéricos , Ácido Fólico/uso terapêutico , Defeitos do Tubo Neural , Complicações na Gravidez , Aborto Eugênico/estatística & dados numéricos , Europa (Continente)/epidemiologia , Feminino , Morte Fetal , Assistência Alimentar , Humanos , Nascido Vivo/epidemiologia , Avaliação das Necessidades , Defeitos do Tubo Neural/epidemiologia , Defeitos do Tubo Neural/prevenção & controle , Formulação de Políticas , Gravidez , Complicações na Gravidez/epidemiologia , Complicações na Gravidez/etiologia , Complicações na Gravidez/prevenção & controle , Resultado da Gravidez/epidemiologia , Prevalência , Complexo Vitamínico B/uso terapêuticoRESUMO
OBJECTIVE: The aim of this study was to assess the opinion of obstetric care providers who perform prenatal ultrasounds to screen for anomalies and who advise women about their options, including termination of pregnancy, when an oral cleft is detected. We compared providers' opinions about pregnancy termination for isolated oral cleft in The Netherlands, where the number of terminations is low, and in Israel, where the number is high. METHODS: Online questionnaires were used. The questions assessed the providers' views regarding the estimated burden of treatment, the functioning ability, and the level of happiness of children with an oral cleft and their parents. Additionally, we assessed providers' opinions on pregnancy termination for isolated oral cleft. RESULTS: In The Netherlands, more professionals considered oral cleft a disability (rate differences 17.8%, 95% confidence interval: 0.5-33.1%) than in Israel. In the Netherlands, 10.6% of respondents (compared with 11.1% in Israel) thought that an isolated cleft was a reason for terminations of pregnancy (TOP) (rate differences 0.6%, 95% confidence interval: -12% to 10.9%). CONCLUSIONS: Prenatal care providers in The Netherlands and Israel do not differ in their opinions about the severity of oral cleft and the acceptability of TOP for an isolated oral cleft. This study shows that prenatal care providers' attitudes do therefore not explain the dramatic difference between these countries in the number of TOP for isolated oral cleft.
Assuntos
Aborto Eugênico , Atitude do Pessoal de Saúde , Fenda Labial/diagnóstico por imagem , Fissura Palatina/diagnóstico por imagem , Tocologia , Obstetrícia , Aborto Induzido , Estudos Transversais , Feminino , Humanos , Israel , Países Baixos , Gravidez , Ultrassonografia Pré-NatalRESUMO
One widely held view of prenatal screening (PNS) is that its foremost aim is, or should be, to enable reproductive choice; this is the Pure Choice view. The article critiques this position by comparing it with an alternative: Public Health Pluralism. It is argued that there are good reasons to prefer the latter, including the following. (1) Public Health Pluralism does not, as is often supposed, render PNS more vulnerable to eugenics-objections. (2) The Pure Choice view, if followed through to its logical conclusions, may have unpalatable implications, such as extending choice well beyond health screening. (3) Any sensible version of Public Health Pluralism will be capable of taking on board the moral seriousness of abortion and will advocate, where practicable, alternative means of reducing the prevalence of disease and disability. (4) Public Health Pluralism is at least as well-equipped as the Pure Choice model to deal with autonomy and consent issues.
Assuntos
Aborto Eugênico/ética , Comportamento de Escolha/ética , Anormalidades Congênitas/diagnóstico , Pessoas com Deficiência , Consentimento Livre e Esclarecido/ética , Autonomia Pessoal , Gestantes , Diagnóstico Pré-Natal/ética , Saúde Pública/ética , Discriminação Social , Compreensão , Anormalidades Congênitas/genética , Diversidade Cultural , Tomada de Decisões/ética , Dissidências e Disputas , Síndrome de Down/diagnóstico , Eugenia (Ciência) , Feminino , Testes Genéticos/ética , Humanos , Comportamento de Busca de Informação , Princípios Morais , Programas Nacionais de Saúde/ética , Gravidez , Gestantes/psicologia , Comportamento Reprodutivo/ética , Reino UnidoRESUMO
A new landscape of prenatal testing (PNT) is presently developing, including new techniques for risk-reducing, non-invasive sampling of foetal DNA and drastically enhanced possibilities of what may be rapidly and precisely analysed, surrounded by a growing commercial genetic testing industry and a general trend of individualization in healthcare policies. This article applies a set of established ethical notions from past debates on PNT for analysing PNT screening-programmes in this new situation. While some basic challenges of PNT stay untouched, the new development supports a radical individualization of how PNT screening is organized. This reformation is, at the same time, difficult to reconcile with responsible spending of resources in a publicly funded healthcare context. Thus, while the ethical imperative of individualization holds and applies to PNT, the new landscape of PNT provides reasons to start rolling back the type of mass-screening programmes currently established in many countries. Instead, more limited offers are suggested, based on considerations of severity of conditions and optimized to simultaneously serve reproductive autonomy and public health within an acceptable frame of priorities. The new landscape of PNT furthermore underscores the ethical importance of supporting and including people with disabilities. For the very same reason, no ban on what may be analysed using PNT in the new landscape should be applied, although private offers must, of course, conform to strict requirements of respecting reproductive autonomy and what that means in terms of counselling.
Assuntos
Aborto Eugênico/ética , Comportamento de Escolha/ética , Anormalidades Congênitas/diagnóstico , Pessoas com Deficiência , Testes Genéticos/ética , Programas de Rastreamento/ética , Autonomia Pessoal , Gestantes , Diagnóstico Pré-Natal/ética , Saúde Pública , Adulto , Compreensão , Anormalidades Congênitas/genética , Tomada de Decisões/ética , Pessoas com Deficiência/estatística & dados numéricos , Dissidências e Disputas , Feminino , Testes Genéticos/economia , Testes Genéticos/métodos , Testes Genéticos/tendências , Humanos , Comportamento de Busca de Informação , Consentimento Livre e Esclarecido/ética , Programas de Rastreamento/economia , Programas de Rastreamento/métodos , Programas de Rastreamento/tendências , Programas Nacionais de Saúde , Medicina de Precisão , Gravidez , Gestantes/psicologia , Diagnóstico Pré-Natal/economia , Diagnóstico Pré-Natal/métodos , Diagnóstico Pré-Natal/tendências , Saúde Pública/ética , Saúde Pública/métodos , Saúde Pública/tendênciasRESUMO
Prenatal screening for foetal abnormalities such as Down's syndrome differs from other forms of population screening in that the usual aim of achieving health gains through treatment or prevention does not seem to apply. This type of screening leads to no other options but the choice between continuing or terminating the pregnancy and can only be morally justified if its aim is to provide meaningful options for reproductive choice to pregnant women and their partners. However, this aim should not be understood as maximizing reproductive choice per se. Only if understood as allowing prospective parents to avoid suffering related to living with (a child with) serious disorders and handicaps can prenatal screening be a publicly or collectively funded programme. The alternative of moving prenatal testing outside the healthcare system into the private sector is problematic, as it makes these tests accessible only to those who can afford to pay for it. New developments in prenatal screening will have to be assessed in terms of whether and to what extent they either contribute to or undermine the stated aim of providing meaningful options for reproductive choice. In the light of this criterion, this article discusses the introduction of the new non-invasive prenatal test (NIPT), the tendency to widen the scope of follow-up testing, as well as the possible future scenarios of genome-wide screening and 'prenatal personalised medicine'. The article ends with recommendations for further debate, research and analysis.
Assuntos
Comportamento de Escolha/ética , Anormalidades Congênitas/diagnóstico , Pessoas com Deficiência , Testes Genéticos/ética , Programas de Rastreamento/ética , Autonomia Pessoal , Gestantes , Diagnóstico Pré-Natal/ética , Setor Privado , Saúde Pública , Aborto Eugênico/economia , Aborto Eugênico/ética , Adulto , Anormalidades Congênitas/genética , Tomada de Decisões/ética , Pessoas com Deficiência/psicologia , Dissidências e Disputas , Feminino , Testes Genéticos/economia , Testes Genéticos/métodos , Testes Genéticos/tendências , Heterozigoto , Humanos , Comportamento de Busca de Informação/ética , Programas de Rastreamento/economia , Programas de Rastreamento/métodos , Programas de Rastreamento/tendências , Programas Nacionais de Saúde , Medicina de Precisão/ética , Medicina de Precisão/métodos , Medicina de Precisão/tendências , Gravidez , Gestantes/psicologia , Diagnóstico Pré-Natal/economia , Diagnóstico Pré-Natal/métodos , Diagnóstico Pré-Natal/tendências , Saúde Pública/ética , Saúde Pública/métodos , Saúde Pública/tendências , Comportamento Reprodutivo/éticaRESUMO
BACKGROUND: In the Netherlands, prenatal screening follows an opting in system and comprises two non-invasive tests: the combined test to screen for trisomy 21 at 12 weeks of gestation and the fetal anomaly scan to detect structural anomalies at 20 weeks. Midwives counsel about prenatal screening tests for congenital anomalies and they are increasingly having to counsel women from religious backgrounds beyond their experience. This study assessed midwives' perceptions and practices regarding taking client's religious backgrounds into account during counseling. As Islam is the commonest non-western religion, we were particularly interested in midwives' knowledge of whether pregnancy termination is allowed in Islam. METHODS: This exploratory study is part of the DELIVER study, which evaluated primary care midwifery in The Netherlands between September 2009 and January 2011. A questionnaire was sent to all 108 midwives of the twenty practices participating in the study. RESULTS: Of 98 respondents (response rate 92%), 68 (69%) said they took account of the client's religion. The two main reasons for not doing so were that religion was considered irrelevant in the decision-making process and that it should be up to clients to initiate such discussions. Midwives' own religious backgrounds were independent of whether they paid attention to the clients' religious backgrounds. Eighty midwives (82%) said they did not counsel Muslim women differently from other women. Although midwives with relatively many Muslim clients had more knowledge of Islamic attitudes to terminating pregnancy in general than midwives with relatively fewer Muslim clients, the specific knowledge of termination regarding trisomy 21 and other congenital anomalies was limited in both groups. CONCLUSION: While many midwives took client's religion into account, few knew much about Islamic beliefs on prenatal screening for congenital anomalies. Midwives identified a need for additional education. To meet the needs of the changing client population, counselors need more knowledge of religious opinions about the termination of pregnancy and the skills to approach religious issues with clients.
Assuntos
Atitude do Pessoal de Saúde , Anormalidades Congênitas/diagnóstico , Aconselhamento , Islamismo , Tocologia , Religião e Medicina , Aborto Eugênico , Adulto , Competência Clínica , Anormalidades Congênitas/genética , Competência Cultural , Síndrome de Down/diagnóstico , Feminino , Testes Genéticos , Humanos , Masculino , Pessoa de Meia-Idade , Países Baixos , Gravidez , Inquéritos e Questionários , Ultrassonografia Pré-NatalRESUMO
OBJECTIVE: To explore the psychosocial, educational, and administrative support needs of labor and delivery (L&D) nurses who care for women undergoing pregnancy termination. DESIGN: A qualitative, descriptive design. SETTING: This study was conducted on a L&D unit at a large, university-affiliated hospital in Quebec, Canada. PARTICIPANTS: A convenience sample of 10 L&D nurses participated in this study. Ages of participants ranged from 25 to 55 years, and experience on the unit ranged from 1 to 30 years. METHODS: One-time, face-to-face interviews were conducted with each participant. Audio-recorded interviews were transcribed verbatim and analyzed using inductive content analysis. RESULTS: Participants valued interpersonal support from nurse colleagues and guidance from experienced nurses in managing the emotional aspect of this care. They raised concerns about the effect of nursing workload and patient-to-nurse ratios on patient care. Nurses noted a desire for knowledge and skill-building through access to evidence-based literature, continuing education sessions, and workshops. They also expressed a need for more information regarding the genetic counseling process and community resources available to women undergoing pregnancy termination. CONCLUSION: Ensuring continuity of care through knowledge sharing related to genetic counseling and community resources creates the context for holistic patient care. Increased attention to the particular needs of L&D nurses providing care to women undergoing termination may enhance the quality and safety of care for this unique population.
Assuntos
Aborto Eugênico , Educação Continuada em Enfermagem , Inteligência Emocional , Enfermagem Obstétrica/normas , Administração de Recursos Humanos em Hospitais , Carga de Trabalho , Aborto Eugênico/enfermagem , Aborto Eugênico/psicologia , Adulto , Atitude do Pessoal de Saúde , Educação Continuada em Enfermagem/métodos , Educação Continuada em Enfermagem/normas , Feminino , Conhecimentos, Atitudes e Prática em Saúde , Necessidades e Demandas de Serviços de Saúde , Humanos , Pessoa de Meia-Idade , Papel do Profissional de Enfermagem , Administração de Recursos Humanos em Hospitais/métodos , Administração de Recursos Humanos em Hospitais/normas , Gravidez , Competência Profissional/normas , Quebeque , Inquéritos e QuestionáriosRESUMO
Due to new offers in prenatal diagnostics pregnant women are forced to make choices. In Switzerland physicians are obliged to inform previous to prenatal tests and to obtain informed consent. Considering the complexity of this information and the consequences of a positive result, counselling is challenging, especially in an intercultural context. A questionnaire-based study compared information processing, test interpretation and emotional response of pregnant women from Switzerland and adjacent countries with Turkish women. Knowledge of the latter was significantly lower and they found counselling more unsettling, but their acceptance of prenatal tests was significantly higher. An empathetic approach and the right words are decisive, and counselling will even gain importance when considering the increase in options patients are confronted with.
Les nouvelles offres dans le diagnostic prénatal contraignent les femmes enceintes à faire des choix. En Suisse, les médecins ont le devoir d'informer au sujet des tests prénataux et en obtenir le consentement. Compte tenu de la complexité, ce conseil est exigeant, avant tout dans un contexte interculturel. Une étude basée sur des questionnaires a comparé les connaissances et les réactions émotionnelles des femmes enceintes de Suisse avec des femmes venant de la Turquie. Cela a montré que les connaissances de ces dernières étaient moindres et qu'elles se sentaient plus insécurisées tout en montrant une acceptation significativement plus élevée relativement au diagnostic prénatal. Une attitude empathique et des mots bien choisis sont décisifs et leur importance va encore prendre de l'ampleur avec l'augmentation des options à disposition des patientes.
Assuntos
Educação de Pacientes como Assunto , Diagnóstico Pré-Natal , Aborto Eugênico/ética , Aborto Eugênico/psicologia , Emigrantes e Imigrantes/educação , Emigrantes e Imigrantes/psicologia , Ética Médica , Feminino , Maternidades , Hospitais Universitários , Humanos , Consentimento Livre e Esclarecido/ética , Consentimento Livre e Esclarecido/psicologia , Cobertura do Seguro/economia , Programas Nacionais de Saúde/economia , Educação de Pacientes como Assunto/ética , Gravidez , Diagnóstico Pré-Natal/economia , Diagnóstico Pré-Natal/ética , Diagnóstico Pré-Natal/psicologia , Suíça , Turquia/etnologiaRESUMO
Open spina bifida is a non-lethal fetal anomaly. Significant advances in the prevention, diagnosis and treatment of open spina bifida have been made over the past 75 years. The most significant strategy for the prevention of open spina bifida has been with folic acid supplementation; however, further investigation into the complicated role that genetics and the environment play in metabolism are coming to light. Ultrasound is the gold standard diagnostic tool for spina bifida. Three-dimensional ultrasound and magnetic resonance imaging are also beginning to play a role in the characterisation of the open spina bifida spinal lesion. Lesion level has been closely correlated to short and long-term outcomes, and prenatal characterisation of lesion level on ultrasound is important for patient counselling. Long-term outcomes of people living with spina bifida are available and should be used for non-directive patient counselling about pregnancy choices for women with open spina bifida.
Assuntos
Disrafismo Espinal/diagnóstico por imagem , Ultrassonografia Pré-Natal , Aborto Eugênico , Feminino , Terapias Fetais/efeitos adversos , Humanos , Imageamento por Ressonância Magnética , Testes para Triagem do Soro Materno , Gravidez , Fatores de Risco , Disrafismo Espinal/sangue , Disrafismo Espinal/complicações , Disrafismo Espinal/epidemiologia , Disrafismo Espinal/cirurgia , alfa-Fetoproteínas/metabolismoRESUMO
OBJECTIVES: The aim of the study was to explore pregnant women's experiences of received information in relation to fetal malformation detected on ultrasound. METHOD: 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. RESULTS: 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. CONCLUSION: 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.
Assuntos
Anormalidades Congênitas/diagnóstico , Avaliação das Necessidades , Preferência do Paciente , Gestantes/psicologia , Relações Profissional-Paciente , Ultrassonografia Pré-Natal , Aborto Eugênico , Adulto , Empatia , Feminino , Humanos , Entrevistas como Assunto , Tocologia , Educação de Pacientes como Assunto , Satisfação do Paciente , Gravidez , Segundo Trimestre da GravidezRESUMO
Apert syndrome (Acrocephalosyndactyly type I; AS) is a rare but well-known autosomal dominant disorder characterized by craniosynostosis, midface hypoplasia, bony/cutaneous syndactyly of fingers and toes as well as a variety of associated congenital anomalies involving the brain, heart, limbs and other organ systems. We report the case of a fetus with molecularly confirmed Apert syndrome and additional fusion of the thalamic nuclei. Various central nervous system anomalies, have been reported in patients with AS. However, as far as we know cases of fused thalami in Apert syndrome have never been reported so far.
Assuntos
Acrocefalossindactilia/patologia , Tálamo/anormalidades , Anormalidades Múltiplas , Aborto Eugênico , Acrocefalossindactilia/genética , Adulto , Análise Mutacional de DNA , Evolução Fatal , Feminino , Idade Gestacional , Humanos , Mutação , Medição da Translucência Nucal , Gravidez , Receptor Tipo 2 de Fator de Crescimento de Fibroblastos/genética , Ultrassonografia Pré-NatalRESUMO
Sickle Cell Disease (SCD) is a significant public health burden in Ghana. Recent studies indicate that 2% of Ghanaian newborns are affected by SCD; one in three Ghanaians has the hemoglobin S and/or C gene. As a means of controlling the disease, some authorities have recommended prenatal diagnosis (PND) and selective abortion. In the current era, SCD has a good prognosis and fairly reasonable quality of life. Advances in bone marrow transplantation have shown the disease is curable in selected patients. PND and selective abortion therefore raises a myriad of ethical dilemmas which are considered in this review. In the light of the demonstration of improved prognosis in recent times, PND and selective abortion appears to be applying capital punishment to the unborn child for "crimes" only the parents can be responsible for. In this review, we recommend control of SCD on three levels--preconception genetic testing and strategic reproductive choices, PND and education for carrier parents, and holistic management of persons with SCD. We emphasize the critical importance of self-management, especially self-awareness, in assuring a good quality of life for persons with SCD. We believe such an approach is cost-effective, and consistent with sound ethical principles and good conscience.
Assuntos
Aborto Eugênico/ética , Anemia Falciforme/prevenção & controle , Gana , HumanosRESUMO
INTRODUCTION: Late termination of pregnancy combines psychological distress with severe physical pain. The present study evaluated the benefit of adding oral pregabalin to epidural analgesia during this procedure. METHODS: Healthy women were randomly allocated to receive either oral pregabalin 150 mg/12 h or prazepam 10 mg/12 h at the induction of the late termination of pregnancy procedure. When they felt abdominal pain (numerical rating scale ranging from 0 [no pain] to 100 [worst pain possible]), patient-controlled epidural analgesia was activated and set to deliver ropivacaine 0.1% with sufentanil 0.25 µg/ml, 5 ml/h with a bolus dose of 5 ml/30 min. Rescue analgesia was available as needed by administration of 10 ml ropivacaine 0.1% (pain score less than 60/100) or 0.2% (at least 60/100). The primary outcome was the consumption of epidural analgesics. RESULTS: Forty-eight patients participated in the study. Demographic and obstetric data were similar. Pregabalin reduced total ropivacaine consumption 11.3 ± 3.2 mg/h (mean ± SD) versus 15.1 ± 4.9 mg/h in the prazepam group (P = 0.005), an effect related to a decrease in the need for rescue analgesia. In the pregabalin group, fewer women asked for rescue dose (75 vs. 96%; P = 0.048), and the number of rescue doses per patient was reduced (1 [0-2] vs. 2 [1-3]); median [interquartile range], P = 0.005), particularly the need for ropivacaine 0.2%. DISCUSSION: This is the first study considering the use of pregabalin for labor pain associated with late termination of pregnancy, showing that pregabalin 150 mg/12 h is a helpful adjuvant to epidural analgesia. Modulation of both visceral sensitization and affective component of pain may contribute to the benefits observed.
Assuntos
Aborto Eugênico , Analgesia Epidural/métodos , Analgesia Controlada pelo Paciente/métodos , Dor do Parto/tratamento farmacológico , Ácido gama-Aminobutírico/análogos & derivados , Aborto Eugênico/efeitos adversos , Aborto Eugênico/psicologia , Administração Oral , Adulto , Quimioterapia Adjuvante/métodos , Método Duplo-Cego , Avaliação de Medicamentos , Feminino , Humanos , Dor do Parto/fisiopatologia , Dor do Parto/psicologia , Medição da Dor/efeitos dos fármacos , Pregabalina , Gravidez , Segundo Trimestre da Gravidez/psicologia , Ácido gama-Aminobutírico/administração & dosagemRESUMO
OBJECTIVE: The traumatic loss of an unborn child by induced termination of pregnancy because of fetal malformation is a major life event that causes intense maternal grief. Increasing evidence supports the hypothesis that the same neural structures involved in the experience of physical pain are involved in the experience of social pain and loss. METHOD: To investigate neural activation patterns related to acute grief, the authors conducted a functional MRI study of 12 post-termination women and 12 noninduced women who delivered a healthy child. Brain activation was measured while participants viewed pictures of happy baby, happy adult, and neutral adult faces. RESULTS: Relative to comparison women, post-termination women showed greater activation in the middle and posterior cingulate gyrus, the inferior frontal gyrus, the middle temporal gyrus, the thalamus, and the brainstem in response to viewing happy baby faces. Functional connectivity between the cingulate gyrus and the thalamus during the processing of happy baby faces was significantly stronger in post-termination women. CONCLUSIONS: Overall, acute grief after the loss of an unborn child was closely related to the activation of the physical pain network encompassing the cingulate gyrus, the inferior frontal gyrus, the thalamus, and the brainstem. To the authors' knowledge, the stronger functional thalamocingulate connectivity in post-termination women is the first in vivo demonstration of an involvement of the neural maternal attachment network in grief after the loss of an unborn child.
Assuntos
Aborto Induzido/psicologia , Encéfalo/fisiologia , Pesar , Acontecimentos que Mudam a Vida , Aborto Eugênico/psicologia , Doença Aguda , Adulto , Tronco Encefálico/fisiologia , Expressão Facial , Feminino , Lobo Frontal/fisiologia , Giro do Cíngulo/fisiologia , Felicidade , Humanos , Imageamento por Ressonância Magnética/estatística & dados numéricos , Comportamento Materno/psicologia , Vias Neurais/fisiologia , Apego ao Objeto , Dor/fisiopatologia , Gravidez , Lobo Temporal/fisiologia , Tálamo/fisiologiaRESUMO
New screening and prenatal diagnostic techniques, require the Medicine professionals have a clear purpose for its realization, since the intention determined the act is determined in accordance with the values of the Medicine or becoming an event eugenics act by means of "therapeutic abortion". The Family Physician information about these techniques to pregnant women must be based on the status of science, facilitating the risk of loss fetal and false data positive informing of therapeutic possibilities and facilitating respect for the pregnant woman's decision of non-fulfillment of the screening. The information update according to the state of science, should be provided in writing and the informed consent of the patient should be obtained by all professionals involved in testing, with respect shows for the autonomy of the patient.
Assuntos
Medicina de Família e Comunidade/ética , Consentimento Livre e Esclarecido/ética , Pais/psicologia , Diagnóstico Pré-Natal/ética , Aborto Eugênico/ética , Adulto , Atitude , Criança , Transtornos Cromossômicos/diagnóstico , Transtornos Cromossômicos/embriologia , Transtornos Cromossômicos/psicologia , Crianças com Deficiência/psicologia , Feminino , Doenças Fetais/diagnóstico , Doenças Fetais/psicologia , Aconselhamento Genético/ética , Doenças Genéticas Inatas/diagnóstico , Doenças Genéticas Inatas/embriologia , Doenças Genéticas Inatas/psicologia , Testes Genéticos/ética , Humanos , Consentimento Livre e Esclarecido/legislação & jurisprudência , Masculino , Programas Nacionais de Saúde , Relações Pais-Filho , Papel do Médico , Gravidez , Diagnóstico Pré-Natal/psicologia , EspanhaRESUMO
BACKGROUND: Use of periconceptional folic acid supplementation has been promoted in Western Australia since late 1992, and voluntary fortification of some foods with folic acid has been permitted in Australia since 1996. Reduced rates of neural tube defects (NTDs) have been observed since 1995. Aboriginal infants have a higher rate of NTDs, but no fall in rates has been documented. Encephaloceles have not been examined separately. METHODS: Data on anencephaly, spina bifida, and encephalocele were obtained from the Western Australian Birth Defects Registry. The prevalence ratio for each type of NTD was calculated, comparing 1993 to 1995 (promotion of supplements, no fortification) and 1996 to 2006 (promotion of supplements and voluntary fortification) with 1980 to 1992 (no promotion or fortification). RESULTS: From 1996 to 2006, there was a 32% reduction in anencephaly, 23% in spina bifida, and 34% in encephalocele compared with 1980 to 1992. There were no differences seen from 1993 to 1995 compared with 1980 to 1992. For Aboriginal infants, the rates were higher than for non-Aboriginal infants, for each type of NTD. The prevalence ratios, comparing 1996 to 2006 with 1980 to 1995, were 0.70 (CI, 0.61-0.79) for non-Aboriginal infants and 0.90 (CI, 0.61-1.32) for Aboriginal infants. CONCLUSIONS: Overall, the rates of encephalocele, anencephaly, and spina bifida have fallen to a similar extent in association with promotion of folic acid supplements and voluntary fortification. No such falls were seen for Aboriginal infants. These data will provide a useful baseline against which to monitor the effects of mandatory fortification on NTDs when it is introduced in Australia in September 2009.
Assuntos
Suplementos Nutricionais , Encefalocele/epidemiologia , Ácido Fólico/uso terapêutico , Alimentos Fortificados , Promoção da Saúde , Defeitos do Tubo Neural/epidemiologia , Aborto Eugênico/estatística & dados numéricos , Austrália/epidemiologia , Suplementos Nutricionais/estatística & dados numéricos , Feminino , Alimentos Fortificados/estatística & dados numéricos , Previsões , Promoção da Saúde/métodos , Humanos , Recém-Nascido , Gravidez , Taxa de Gravidez/tendências , Prevalência , Sistema de Registros , Programas Voluntários/estatística & dados numéricosRESUMO
Due to its excessive cost thalassemia management is a major health care problem in Sri Lanka. The majority of doctors are using only desferrioxamine (DFO), in grossly inadequate doses mainly because of its unavailability. Deferiprone (L1), which is more affordable, is not used due to fear of toxicity, as previously reported. Arthropathy attributed to L1 has been observed in some patients, and has led to the discontinuation of the drug in all patients, without scientific rationale. The proposed thalassemia prevention project for Uva Province is based on prevention of marriages between carriers. This could be achieved by carrier screening and counseling of teenagers and adolescents well before they select their partners. In Sri Lanka, people find their marriage partners at their work place or universities, by themselves, or with the help of professional marriage brokers (they are called Kapuwa), through relatives and close friends. This process of finding a partner may also be helped by paper advertisements. However, in addition to the appearance and attitude of the prospective partner, the caste, social background and horoscope are major considerations in selecting a partner. Even when they select partners on their own at the work place or university, they keep these factors in the back of their minds to ensure social acceptance. Many relationships are given up due to objections and advice from parents when the caste or social background does not match. A horoscope is a written document that almost every child gets, written by a professional horoscope reader and depending on the time of birth. It is believed, according to the horoscope, that a person's attitudes, desires, future prospects of finding a suitable partner, could be predicted. It is rare to proceed with a marriage if the horoscope does not match. These customs are considered less seriously among educated people when they find their partner at the work place or university. The concept of thalassemia risk-free marriages advocates promotion of marriages where at least one partner is a non-carrier. Success of such a project could be monitored at the time of marriage. This opinion survey indicates that the public is motivated to promote carrier screening and the prevention of thalassemia.