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1.
BMC Med Ethics ; 25(1): 34, 2024 Mar 21.
Artigo em Inglês | MEDLINE | ID: mdl-38515078

RESUMO

BACKGROUND: Non-invasive prenatal testing (NIPT), which can screen for aneuploidies such as trisomy 21, is being implemented in several public healthcare systems across Europe. Comprehensive communication and information have been highlighted in the literature as important elements in supporting women's reproductive decision-making and addressing relevant ethical concerns such as routinisation. Countries such as England and France are adopting broadly similar implementation models, offering NIPT for pregnancies with high aneuploidy probability. However, we do not have a deeper understanding of how professionals' counselling values and practices may differ between these contexts. METHODS: In this paper, we explore how professionals in England and France support patient decision-making in the provision of NIPT and critically compare professional practices and values. We draw on data from semi-structured interviews with healthcare professionals. RESULTS: Both English and French professionals emphasised values relating to patient choice and consent. However, understandings and application of these values into the practice of NIPT provision differed. English interviewees placed a stronger emphasis on interpreting and describing the process of counselling patients and clinical care through a "principle" lens. Their focus was on non-directiveness, standardisation, and the healthcare professional as "decision-facilitator" for patients. French interviewees described their approach through a "procedural" lens. Their focus was on formal consent, information, and the healthcare professional as "information-giver". Both English and French professionals indicated that insufficient resources were a key barrier in effectively translating their values into practice. CONCLUSION: Our findings illustrate that supporting patient choice in the provision of NIPT may be held as an important value in common on a surface level, but can be understood and translated into practice in different ways. Our findings can guide further research and beneficially inform practice and policy around NIPT provision.


Assuntos
Síndrome de Down , Diagnóstico Pré-Natal , Gravidez , Humanos , Feminino , Testes Genéticos , Aneuploidia , França , Inglaterra
2.
Clin Genet ; 104(2): 147-162, 2023 08.
Artigo em Inglês | MEDLINE | ID: mdl-37095632

RESUMO

Huntington Disease (HD) is an incurable autosomal dominant single gene neurodegenerative disorder. Typical onset is between 30 and 40 years and characterised by motor difficulties, cognitive impairment, and behavioural and personality changes. The availability of reproductive testing means that affected and at-risk individuals can make reproductive decisions with genetic risk in mind. We aimed to summarise the literature on reproductive decision-making in the context of HD risk in terms of outcomes and the subjective experiences of at-risk individuals. Five databases were searched. Findings were synthesised using Framework analysis to identify common factors across results of quantitative and qualitative studies. Twenty five studies met inclusion criteria. Framework analysis identified the following key areas: 'The relationship between reproductive intentions and HD genetic risk', 'Views on assistive options', 'Complexity and challenges in reproductive decision-making', 'Actual reproductive outcomes', and 'Other factors influencing reproductive decision-making'. Quality of included studies was mixed. Reproductive decision making in the context of HD risk was found to be a complex and emotionally challenging process. Further research is required into reproductive decision-making and outcomes among those not utilising assistive options, and in developing a model of reproductive decision-making in HD.


Assuntos
Doença de Huntington , Humanos , Doença de Huntington/genética , Reprodução/genética , Fatores de Risco , Tomada de Decisões
3.
Pediatr Blood Cancer ; 70(7): e30384, 2023 07.
Artigo em Inglês | MEDLINE | ID: mdl-37102416

RESUMO

BACKGROUND: Despite needing to be informed about sickle cell trait (SCT) status to make informed reproductive decisions, more than 80% of adults with SCT, including parents of children with SCT who have a high prevalence of SCT, do not know their status. PROCEDURE: This was a prospective study of parents who received SCT telephone education from the state department of health and then completed SCTaware, a videoconference-administered SCT education program. The objectives were to evaluate knowledge after telephone education and explore if SCTaware closes knowledge gaps. Participants completed a demographic survey, a health literacy assessment, and reported their SCT status. They completed the Sickle Cell Trait Knowledge Assessment before receiving SCTaware, immediately after, and at follow-up visits; high knowledge was a score of 75% or higher correct. RESULTS: SCTaware and the initial surveys were completed by 61 parents; 45 completed the 6-month surveys. Only 43% of participants had high SCT knowledge after telephone education; 92% achieved high knowledge immediately after, and 84% continued with high knowledge at 6 months. Most parents reported they were aware of their SCT status after telephone education; 12 changed their response after receiving SCTaware. CONCLUSIONS: Our findings suggest that over half of parents have low SCT knowledge following telephone education, and many may be unaware of their status. SCTaware closes knowledge gaps, leads to high sustained knowledge, and is a potentially scalable tool. Future studies should refine SCTaware and determine if parents use their knowledge to inform their children and reproductive decisions.


Assuntos
Anemia Falciforme , Traço Falciforme , Adulto , Humanos , Criança , Traço Falciforme/epidemiologia , Estudos Prospectivos , Conhecimentos, Atitudes e Prática em Saúde , Pais
4.
Int J Equity Health ; 22(1): 179, 2023 09 05.
Artigo em Inglês | MEDLINE | ID: mdl-37670302

RESUMO

BACKGROUND: Forced displacement impacts the health, rights and safety of women, which is further compounded by gender inequality. In particular, this has consequences for forcibly displaced women's reproductive health once resettled in a new country. To ensure the reproductive health and rights of forcibly displaced women during and after resettlement, there must be careful consideration of their reproductive decision-making taking into account the context and environment of the host country. AIM: This scoping review aimed to explore the influences on reproductive decision-making among forcibly displaced women resettling in high-income countries. METHOD: A scoping review was conducted following the PRISMA-ScR for reporting. EBSCO was used to search databases covering global health, health policy, psychology, sociology, and philosophy for articles published from 1 January 2012 to 27 April 2022. Data extracted from each article included author(s), year of publication, publication type, aims/objectives, study design, sampling method, data collection or eligibility criteria, study population (i.e., sample size and characteristics), migration status, country(ies) of origin, host country(ies), key findings and limitations. Two independent reviewers screened all articles against eligibility criteria using Covidence. Data charting and thematic analysis were performed independently by one reviewer. FINDINGS: Nineteen articles published between 2013 and 2022 mostly conducted in the United States (36.8%) and Australia (21.1%), with the majority reporting on qualitative findings (68.4%), and women from a wide array of countries and cultures (most commonly African countries) were included. Influences on women's reproductive decision-making related to the contexts before displacement, during displacement, and after arrival, with influences on women's reproductive decision-making identified specific to the context. The influences before displacement included conflict; religious beliefs; socio-cultural gendered expectations; and external control over reproductive autonomy. During displacement influences included paternalism and access to education. Influences after arrival included pressure, restriction, coercion; knowledge and misconceptions; patriarchal power dynamics; and seeking empowerment. An adapted socio-ecological model was developed to interpret the findings. CONCLUSION: This review highlights the complexity and nuances within forcibly displaced women's experiences which influence their reproductive decision-making. Further research may review the evidence base to provide guidance for healthcare professionals and health policies aimed at empowering women to make autonomous reproductive decisions; develop training for healthcare professionals to prevent pressure, restriction and coercion of women's reproductive autonomy; and inform development of policy that takes an intersectional approach to women's health rights and gender equality.


Assuntos
Acessibilidade aos Serviços de Saúde , Direitos Humanos , Humanos , Feminino , Países Desenvolvidos , Escolaridade , África
5.
Support Care Cancer ; 31(7): 423, 2023 Jun 26.
Artigo em Inglês | MEDLINE | ID: mdl-37358675

RESUMO

BACKGROUND: Breast cancer has the highest incidence rate among malignant tumors in China, with a trend of affecting younger women. The treatment has short- and long-term adverse effects such as damage to the ovaries, which may result in infertility. Such consequences then increase patients' concerns over future reproduction. At present, nor do medical staffs continuously assess their overall well-being, or ensure that they have the knowledge necessary to manage their reproductive concerns. This qualitative study aimed to explore psychological and reproductive decision-making experiences of young women who had experienced childbirth after their diagnosis. METHODS: The phenomenological research, as a kind of qualitative study, was conducted on 12 young women who experienced childbirth after breast cancer diagnosis. Data collection was from September 2021 to January 2022 and content analysis method was used to analyze the data. RESULTS: Five main themes were identified: (1) desire for childbearing from individual, familial, and social aspects after the diagnosis of breast cancer; (2) emotional experiences through pregnancy till raising children; (3) support needs from professionals, family, and peer; (4) self and doctors' influencing factors on reproductive decision-making; and (5) satisfaction with the outcome of reproductive decision-making. CONCLUSIONS: The desire for childbearing of young women should be considered during the reproductive decision-making process. A multidisciplinary team is suggested to be set up to provide professional support. During the reproductive process, professional and peer support should be strengthened to improve decision-making abilities, alleviate negative emotional experience, and smoothen the process of reproductive experience for young patients.


Assuntos
Neoplasias da Mama , Gravidez , Criança , Humanos , Feminino , Neoplasias da Mama/diagnóstico , Neoplasias da Mama/psicologia , Tomada de Decisões , Reprodução , China , Pesquisa Qualitativa
6.
Arch Sex Behav ; 52(4): 1355-1363, 2023 05.
Artigo em Inglês | MEDLINE | ID: mdl-36811815

RESUMO

Extramarital partnerships are highly stigmatized in many societies and are typically excluded from studies of family dynamics and social support. Nevertheless, in many societies such relationships are common and can have important impacts on resource security and health outcomes. However, current studies of these relationships come mainly from ethnographic studies, with quantitative data extremely rare. Here we present data from a 10-year study of romantic partnerships among a community of Himba pastoralists in Namibia, where concurrency is common. The majority of married men (97%) and women (78%) currently reported having more than one partner (n = 122). Using multilevel models comparing marital and nonmarital relationships, we found that, contrary to conventional wisdom surrounding concurrency, Himba form enduring bonds with extramarital partners that often last decades and are very similar to marital ones in terms of length, emotional affect, reliability, and future prospects. Qualitative interview data showed that extramarital relationships were imbued with a set of rights and obligations that, while distinct from those of spouses, provide an important source of support. Greater inclusion of these relationships in studies of marriage and family would provide a clearer picture of social support and resource transfers in these communities and help to explain variation in the practice and acceptance of concurrency around the world.


Assuntos
Relações Extramatrimoniais , Infecções por HIV , Masculino , Humanos , Feminino , Reprodutibilidade dos Testes , Casamento , Cônjuges , Comportamento Sexual , Parceiros Sexuais/psicologia
7.
BMC Pregnancy Childbirth ; 23(1): 431, 2023 Jun 10.
Artigo em Inglês | MEDLINE | ID: mdl-37301973

RESUMO

OBJECTIVES: Explore health-care seeking behaviour among couples with pregnancies at-risk of monogenic disorders and compare time duration for obtaining Prenatal Genetic Test (PGT) results based on (i) amniocentesis and Chorionic Villus Sampling (CVS) (ii) in-house testing and out-sourced testing. Report the spectrum of monogenic disorders in our cohort. METHODS: Medical records of women consulting prenatal genetic counselling clinic at Aga Khan University Hospital, Karachi from December-2015 to March-2021 with history of miscarriage or a monogenic disorder in previous children were reviewed. RESULTS: Forty-three pregnancies in 40 couples were evaluated, 37(93%) were consanguineous. Twenty-five (63%) couples consulted before and 15(37%) after conception. Thirty-one (71%) pregnancies underwent CVS at the mean gestational age of 13-weeks and 6-days ± 1-week and 3-days and amniocentesis at 16-weeks and 2-days ± 1-week and 4-days. PGT for 30 (70%) pregnancies was outsourced. The mean number of days for in-house PGT was 16.92 ± 7.80 days whereas for outsourced was 25.45 ± 7.7 days. Mean duration from procedure to PGT result was 20.55 days after CVS compared to 28.75 days after amniocentesis. Eight (18%) fetuses were homozygous for disease-causing variant for whom couples opted for termination of pregnancy (TOP). Twenty-six monogenetic disorders were identified in 40 families. CONCLUSION: Proactive health-care seeking behaviour and TOP acceptance is present amongst couples who have experienced a genetic disorder.


Assuntos
Amniocentese , Países em Desenvolvimento , Gravidez , Criança , Feminino , Humanos , Lactente , Atenção Terciária à Saúde , Amostra da Vilosidade Coriônica , Testes Genéticos
8.
J Psychosoc Oncol ; 41(3): 286-302, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-35959852

RESUMO

PURPOSE: This study explored the experiences of young people with hereditary diffuse gastric cancer (HDGC), an inherited cancer predisposition syndrome, as they navigate becoming and being a parent. DESIGN: We used interpretive description and conducted semi-structured interviews with 13 young Australians (18-39 years) with a CDH1 pathogenic variant (PV). Data were analyzed using team-based, reflexive thematic analysis. FINDINGS: Participants' reproductive decisions centered on the perceived manageability of HDGC, namely via gastrectomy, and timing of their genetic testing. Participants yet to have children and those with challenging gastrectomy experiences favored using reproductive technologies to prevent passing on their PV. Parents who had children before genetic testing described complicated decisions about having more children. Gastrectomy was considered a parental responsibility but recovery diminished parenting abilities. CONCLUSION: Young people with HDGC face unique challenges navigating reproductive decision-making and parenting with gastrectomy. Findings lend credence to calls for longitudinal, developmentally sensitive genetic counseling services.


Assuntos
Neoplasias Gástricas , Adolescente , Humanos , Adulto Jovem , Antígenos CD/genética , Austrália , Caderinas/genética , Predisposição Genética para Doença , Testes Genéticos , Pais , Neoplasias Gástricas/genética , Neoplasias Gástricas/patologia , Neoplasias Gástricas/prevenção & controle , Adulto
9.
Epilepsia ; 63(9): 2392-2402, 2022 09.
Artigo em Inglês | MEDLINE | ID: mdl-35759350

RESUMO

OBJECTIVE: This study addresses the contribution of genetics-related concerns to reduced childbearing among people with epilepsy. METHODS: Surveys were completed by 606 adult patients with epilepsy of unknown cause at our medical center. Poisson regression analysis was used to assess the relations of number of offspring to: (1) genetic attribution (GA: participants' belief that genetics was a cause of their epilepsy), assessed via a novel scale developed from four survey items (Cronbach's alpha = .89), (2) participants' estimates of epilepsy risk in the child of a parent with epilepsy (1%, 5%-10%, 25%, and 50%-100%), and (3) participants' reports of the influence on their reproductive decisions of "the chance of having a child with epilepsy" (none/weak/moderate, strong/very strong). Analyses were adjusted for age, education, race/ethnicity, religion, type of epilepsy (generalized, focal, and both/unclassifiable), and age at epilepsy onset (<10, 10-19, and ≥20 years). RESULTS: Among participants 18-45 years of age, the number of offspring decreased significantly with increasing GA (highest vs lowest GA quartile rate ratio [RR] = .5, p < .001), and increasing estimated epilepsy risk in offspring (with 5%-10% as referent because it is closest to the true value, RR for 25%: .7, p = .05; RR for 50%-100%: .6, p = .03). Number of offspring was not related to the reported influence of "the chance of having a child with epilepsy" on reproductive decisions. Among participants >45 years of age, the number of offspring did not differ significantly according to GA quartile or estimated offspring epilepsy risk. However, those reporting a strong/very strong influence on their reproductive decisions of "the chance of having a child with epilepsy" had only 60% as many offspring as others. SIGNIFICANCE: These findings suggest that overestimating the risk of epilepsy in offspring can have important consequences for people with epilepsy. Patient and provider education about recurrence risks and genetic testing options to clarify risks are critical, given their potential influence on reproductive decisions.


Assuntos
Epilepsia , Adulto , Criança , Epilepsia/genética , Testes Genéticos , Humanos , Reprodução/genética , Percepção Social , Inquéritos e Questionários
10.
BMC Womens Health ; 22(1): 506, 2022 12 08.
Artigo em Inglês | MEDLINE | ID: mdl-36482357

RESUMO

BACKGROUND: Reproductive decision-making is difficult for BRCA-positive women. Our objective was to assess the complexities of decision-making and identify decisional supports for patients and providers when discussing reproductive options prior to risk-reducing salpingo-oophorectomy (RRSO). METHODS: This study was of qualitive design, using data collection via semi-structured interviews conducted from November 2018 to October 2020. Individuals were included if they were identified to provide care to BRCA-positive women. In total, 19 providers were approached and 15 consented to participate. Providers were recruited from three clinics in Toronto, Ontario located at academic centers: [1] A familial ovarian cancer clinic, [2] A familial breast cancer clinic and [3] A fertility clinic, all of which treat carriers of the BRCA1/BRCA2 genetic mutation. The interview guide was developed according to the Ottawa Decision Support Framework and included questions regarding reproductive options available to patients, factors that impact the decision-making process and the role of decisional support. Interviews were transcribed and transcripts were analyzed thematically using NVIVO 12. RESULTS: Providers identified three major decisions that reproductive-aged women face when a BRCA mutation is discovered: [1] "Do I want children?"; [2] "Do I want to take the chance of passing on this the mutation?"; and [3] "Do I want to carry a child?" Inherent decision challenges that are faced by both providers and patients included difficult decision type, competing options, scientifically uncertain outcomes, and challenging decision timing. Modifiable decisional needs included: inadequate knowledge, unrealistic expectations, unclear values and inadequate support or resources. Identified clinical gaps included counselling time constraints, lack of reliable sources of background information for patients or providers and need for time-sensitive, geographically accessible, and centralized care. CONCLUSION: Our study identified a need for a patient information resource that can be immediately provided to patients who carry a BRCA genetic mutation. Other suggestions for clinical practice include more time during consultation appointments, adequate follow-up, value-centric counseling, access to psychosocial support, and a specialized decisional coach.


Assuntos
Criança , Humanos , Feminino , Adulto , Ontário
11.
Qual Health Res ; 32(1): 168-181, 2022 01.
Artigo em Inglês | MEDLINE | ID: mdl-34781775

RESUMO

The reproductive decision-making of young people (aged 15-39 years) with Li-Fraumeni syndrome (LFS), an early onset inherited cancer syndrome, has not been studied in depth. Using interpretive description methodology, we conducted semi-structured interviews with 30 young Australians (mean age 25.5 years) diagnosed with LFS or at 50% genetic risk. With reflexive thematic analysis, we show how young people's reproductive decision-making and ideals for family formation were shaped by a sense of genetic responsibility to ensure the health of future biological kin. Reproductive technology provided choices for family formation in the context of LFS and also complicated reproductive decisions, as these choices were difficult to understand, make, or carry out. We uphold that reproductive decision-making when living with LFS is a profoundly moral practice that may pose significant challenges for young people navigating their formative years. We offer genetic counseling practice recommendations to support individuals with LFS when making reproductive decisions.


Assuntos
Síndrome de Li-Fraumeni , Adolescente , Adulto , Austrália , Predisposição Genética para Doença , Humanos , Síndrome de Li-Fraumeni/genética , Reprodução , Fatores de Risco
12.
Cult Health Sex ; 23(8): 1034-1049, 2021 08.
Artigo em Inglês | MEDLINE | ID: mdl-32589103

RESUMO

Trends of delayed childbearing have accompanied declining birth rates and increasing numbers of childless adults in the USA. Women may postpone parenting in order to save money, find a partner, and get a 'family-friendly' job, but this reproductive strategy may not always be effective. This paper uses two waves of longitudinal data to track childless women's reproductive decision-making and behaviours. During wave 1, interviews were conducted with 72 childless US women between the ages of 25 and 40 about their reproductive desires and intentions. Approximately four years later, a subset of the original sample participated in surveys to assess consistencies between fertility intentions and outcomes, and in-depth interviews to elicit information about changes in their lives that transpired. Whereas some wave 2 participants had fulfilled their goal of becoming parents, the majority were still employing a delaying strategy or had declined to have children. Delayed childbearing was individually strategic for those who could garner resources to be in a better financial or social position to have and raise children, while others kept facing barriers that prevented them from realising their reproductive goals or changed their mind about their fertility intentions and desires.


Assuntos
Fertilidade , Intenção , Adulto , Criança , Feminino , Humanos , Motivação , Pais , Inquéritos e Questionários
13.
Sociol Health Illn ; 42(7): 1611-1625, 2020 09.
Artigo em Inglês | MEDLINE | ID: mdl-32584433

RESUMO

While fatherhood and male involvement in family life have been the focus of much research during the past few decades, we know less about men's involvement in the stage that precedes fatherhood and reproductive decision-making, their awareness of and sense of responsibility for reproductive health and fertility. This article draws attention to how men talk about fertility and reproductive intentions, focusing on how their perceptions and knowledge of fertility and procreation are structured around social norms and expectations. The study was based on interviews with 25 men in reproductive age with no prior history of infertility, including men with as well as without children and men of different sexual orientations and gender diversity. Our findings indicate a tension between, on the one hand, a general tendency among the men to take their fertility for granted and neither think nor talk about it, and, on the other hand, a latent concern about possible infertility which seemed to be activated in the interview situation. These findings raise questions of how conversations about fertility might impact men's thinking about their own fertility that call for further exploration and that are of significance in considerations of how to promote fertility awareness and reproductive health.


Assuntos
Infertilidade , Homens , Fertilidade , Humanos , Masculino , Reprodução , Comportamento Sexual
14.
J Assist Reprod Genet ; 37(8): 1903-1912, 2020 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-32462417

RESUMO

PURPOSE: The decision to undergo preimplantation genetic testing (PGT) entails a variety of personal and societal variables. Although PGT technology is widely accepted and used, few studies have queried the motives and concerns of PGT users; moreover, in-depth qualitative data regarding the PGT experience is scant. METHODS: In order to explore and analyze the experience, concerns, expectations, and attitudes toward the PGT technique and its implications, semi-structured interviews were conducted in a single tertiary medical center with 43 Israeli PGT users for HLA matching and autosomal dominant, autosomal recessive, and X-linked genetic disorders. RESULTS: The primary considerations in choosing PGT were prevention of birth of a child who would suffer a terminal or chronic disease as well as abrogation of a familial genetic condition. Religion played a decisive role in accepting PGT as an antenatal option. Regarding satisfaction with the PGT experience, many interviewees highlighted the need for greater attention to be given to potential stages of failure throughout the procedure and the need for emotional support. Our clinical results regarding implantation rate and cumulative live birth rate are 38-40% and 27-30%, respectively. CONCLUSION: This survey broadens understanding of the specialized needs of women, couples, and minority groups undergoing PGT and underscores the relevance of counseling services for PGT users.


Assuntos
Implantação do Embrião/genética , Fertilização in vitro , Testes Genéticos/métodos , Diagnóstico Pré-Implantação , Adulto , Aneuploidia , Coeficiente de Natalidade , Tomada de Decisão Clínica , Implantação do Embrião/fisiologia , Transferência Embrionária/métodos , Feminino , Humanos , Mutação/genética , Gravidez
15.
J Assist Reprod Genet ; 37(7): 1719-1727, 2020 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-32418135

RESUMO

PURPOSE: This study aims to describe the motives and considerations of couples carrying a structural chromosomal abnormality deciding on preimplantation genetic testing (PGT). METHODS: A qualitative exploratory study was conducted using semi-structured dyadic interviews with 13 couples (N = 26) carrying a structural chromosomal abnormality. All couples had an informative consultation in our PGT centre in the Netherlands. RESULTS: Almost all couples considered PGT or natural conception combined with prenatal diagnosis (PND) as the only two reproductive options. Among several considerations mentioned, the majority indicated that the wish to increase the chance of a successful pregnancy was the most important motive to opt for PGT. All couples who opted for PGT had first tried to conceive spontaneously and entered the PGT programme because of their adverse experiences during these attempts (infertility, recurrent miscarriage, termination of pregnancy, birth of an affected child). Couples that refrained from PGT were of advanced maternal age and expressed the long trajectory of PGT as the main reason to refrain. If conceiving spontaneously would not lead to an ongoing pregnancy, these couples also indicated that they would use PGT. CONCLUSION: This study shows that couples carrying a structural chromosomal abnormality consider PGT and spontaneous conception with PND as relevant reproductive options. They are looking for the option that is in their opinion the fastest way to establish a successful pregnancy. Information on the perceived pros and cons of PGT or spontaneous conception in these couples can help to optimize counselling and psychological support during the decision-making process.


Assuntos
Aberrações Cromossômicas , Heterozigoto , Motivação , Diagnóstico Pré-Implantação/psicologia , Adulto , Feminino , Humanos , Masculino , Gravidez , Diagnóstico Pré-Natal , História Reprodutiva , Inquéritos e Questionários
16.
Qual Health Res ; 30(2): 293-302, 2020 01.
Artigo em Inglês | MEDLINE | ID: mdl-31409193

RESUMO

In this study, we present views on bipolar disorder and reproductive decision-making through an analysis of posts on Reddit™, a major Internet discussion forum. Prior research has shown that the Internet is a useful source of data on sensitive topics. This study used qualitative textual analysis to analyze posts on Reddit™ bipolar discussion boards that dealt with genetics and related topics. All thread titles over 4 years were reviewed (N = 1,800). Genetic risk was often raised in the context of Redditors' discussions about whether or not to have children. Reproductive decision-making for Redditors with bipolar was complex and influenced by factors from their past, present, and imagined future. These factors coalesced under a summative theme: for adults with bipolar disorder, what was the manageability of parenting a child? Reproductive decisions for individuals with bipolar disorder are complex, and Reddit™ is a novel source of information on their perspectives.


Assuntos
Transtorno Bipolar/psicologia , Tomada de Decisões , Serviços de Planejamento Familiar/métodos , Mídias Sociais , Adulto , Transtorno Bipolar/genética , Feminino , Humanos , Masculino , Pesquisa Qualitativa , Reprodução , Adulto Jovem
17.
BMC Pregnancy Childbirth ; 19(1): 22, 2019 Jan 10.
Artigo em Inglês | MEDLINE | ID: mdl-30630440

RESUMO

BACKGROUND: Canadian policies regarding the implementation and public coverage of non-invasive prenatal testing (NIPT) are heterogeneous and shifting, with NIPT being publicly covered for high-risk pregnancies in some provinces, but not others. Such a diverse and evolving policy landscape provides fertile ground for examining the preferences of pregnant women, their partners, and health professionals regarding the implementation and coverage of NIPT by the public healthcare system, as well as the factors influencing their preferences, which is what the present study does. METHODS: In this paper, we report the results of three-large scale Canadian surveys, in which 882 pregnant women, 395 partners of pregnant women, and 184 healthcare professionals participated. RESULTS: The paper focuses on preferences regarding how and when NIPT should be used, as well as the factors influencing these preferences, and how coverage for NIPT should be provided. These are correlated with respondents' levels of knowledge about Down syndrome and testing technologies and with their stated intended use of NIPT results. CONCLUSION: Salient is the marked difference between the preferences of prospective parents and those of healthcare professionals, which has potential implications for Canadian policy regarding NIPT implementation and insurance coverage.


Assuntos
Atitude do Pessoal de Saúde , Ácidos Nucleicos Livres/sangue , Síndrome de Down/diagnóstico , Preferência do Paciente , Gestantes , Diagnóstico Pré-Natal , Síndrome da Trissomia do Cromossomo 13/diagnóstico , Síndrome da Trissomía do Cromossomo 18/diagnóstico , Adulto , Canadá , Síndrome de Down/sangue , Feminino , Conhecimentos, Atitudes e Prática em Saúde , Política de Saúde , Humanos , Cobertura do Seguro , Masculino , Pessoa de Meia-Idade , Gravidez , Gravidez de Alto Risco , Sensibilidade e Especificidade , Cônjuges , Inquéritos e Questionários , Síndrome da Trissomia do Cromossomo 13/sangue , Síndrome da Trissomía do Cromossomo 18/sangue
18.
J Genet Couns ; 28(1): 141-154, 2019 02.
Artigo em Inglês | MEDLINE | ID: mdl-30629758

RESUMO

Members of the public face particular challenges when undergoing reproductive genetic screening. Lack of family history with genetic disease has been identified as a key barrier affecting screening uptake and responses to genetic risk. This study explores this obstacle using beta thalassaemia as a case study. Fifteen in-depth qualitative interviews were conducted exploring the reproductive views and decisions of people at risk of transmitting thalassaemia. Eleven participants had thalassaemia themselves and/or were members of an affected family. Four participants were identified as thalassaemia carriers through genetic screening programmes with no family history. Notable differences were observed between these two groups. For thalassaemic individuals and families, past experience clarified and facilitated their sense of reproductive responsibility, however carriers struggled to relate to, and incorporate the information into their lives. It was witnessing their child becoming symptomatic-rather than receiving a diagnosis or genetic risk information per se that had the most substantial influence on carriers' subsequent views and decisions. Educational resources used to support genetic screening programmes would benefit from an engagement with the experiential accounts of life with genetic disease in order to more effectively bridge the chasm in knowledge and understanding between affected families and the general public, towards whom expansive genetic screening is aimed.


Assuntos
Testes Genéticos , Conhecimentos, Atitudes e Prática em Saúde , Talassemia/diagnóstico , Talassemia/genética , Adulto , Idoso , Tomada de Decisões , Feminino , Heterozigoto , Humanos , Masculino , Pessoa de Meia-Idade , Fatores de Risco , Reino Unido
19.
J Genet Couns ; 28(3): 533-542, 2019 06.
Artigo em Inglês | MEDLINE | ID: mdl-30629779

RESUMO

A nationwide pretest-posttest study was conducted in all clinical genetic centres in the Netherlands, to evaluate the effects of an online decision aid to support persons who have a genetic predisposition to cancer and their partners in making an informed decision regarding reproductive options. Main outcomes (decisional conflict, knowledge, realistic expectations, level of deliberation, and decision self-efficacy) were measured before use (T0), immediately after use (T1), and at 2 weeks (T2) after use of the decision aid. Paired sample t tests were used to compute differences between the first and subsequent measurements. T0-T1 and T0-T2 comparisons indicate a significant reduction in mean decisional conflict scores with stronger effects for participants with high baseline decisional conflict. Furthermore, use of the decision aid resulted in increased knowledge levels and improved realistic expectations. Level of deliberation only increased for participants with lower baseline levels of deliberation. Decision self-efficacy increased for those with low baseline scores, whereas those with high baseline scores showed a reduction at T2. It can be concluded that use of the decision aid resulted in several positive outcomes indicative of informed decision-making. The decision aid is an appropriate and highly appreciated tool to be used in addition to reproductive counseling.


Assuntos
Técnicas de Apoio para a Decisão , Predisposição Genética para Doença , Neoplasias/genética , Sistemas On-Line , Participação do Paciente , Reprodução , Adulto , Feminino , Humanos , Masculino , Países Baixos , Parceiros Sexuais
20.
J Relig Health ; 58(1): 53-63, 2019 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-28560488

RESUMO

This article draws upon qualitative ethnographic data collected between 2005 and 2013 in southern Romania among women who have been consistently using abortion as a contraceptive method. It particularly considers the role that lived religion might have played in some individuals' strategies to render abortion a justifiable practice. Over the last seven decades, Romanian women's experiences of abortion have often been at odds with both secular and religious regulations. This study shifts the perspective from the biopolitics and the bioethics of abortion toward women's own reproductive decision-making strategies in a context of enduring traditional patriarchy. It explores the fluid and pragmatic ways in which some Romanians use the notions of "God's will," "sin," "redemption," "afterlife," and "Godparenting" to redefine abortion as a partially disembodied reproductive event. As a reproductive decision-making resource, lived religion empowers women to navigate the lived complexities of conception and contraception.


Assuntos
Aborto Induzido , Aborto Espontâneo , Religião , Adulto , Idoso , Idoso de 80 Anos ou mais , Anticoncepção , Tomada de Decisões , Feminino , Humanos , Pessoa de Meia-Idade , Gravidez , Romênia , Adulto Jovem
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