scholarly journals Access to Prenatal Testing and Ethically Informed Counselling in Germany, Poland and Russia

2021 ◽  
Vol 11 (9) ◽  
pp. 937
Author(s):  
Marcin Orzechowski ◽  
Cristian Timmermann ◽  
Katarzyna Woniak ◽  
Oxana Kosenko ◽  
Galina Lvovna Mikirtichan ◽  
...  
Keyword(s):  
Ethical Issues ◽  
Pregnancy Termination ◽  
Prenatal Testing ◽  
Healthcare Services ◽  
Structural Factors ◽  
Structured Interviews ◽  
Non Invasive ◽  
Expectant Mothers ◽  
Or Organization

The development of new methods in the field of prenatal testing leads to an expansion of information that needs to be provided to expectant mothers. The aim of this research is to explore opinions and attitudes of gynecologists in Germany, Poland and Russia towards access to prenatal testing and diagnostics in these countries. Semi-structured interviews were conducted with n = 18 gynecologists in Germany, Poland and Russia. The interviews were analyzed using the methods of content analysis and thematic analysis. Visible in all three countries is a connection of prenatal medicine with the politically and socially contentious issue of pregnancy termination. Respondents in Poland and Russia concentrated on the topic of inadequate resources. Quality of information for expectant mothers is an important point in all three countries. Only in Germany was the issue of language barriers in communication raised. With regard to non-invasive prenatal testing (NIPT) respondents in Germany focused on the ethical issues of routinization of testing; in Poland and Russia they concentrated on fair access to NIPT. Challenges in all three countries arise from structural factors such as imprecise and prohibitive regulations, lack of resources or organization of healthcare services. These should be addressed on a political and medico-ethical level.

scholarly journals Sex selection and non‐invasive prenatal testing: A review of current practices, evidence, and ethical issues

2020 ◽  
Vol 40 (4) ◽  
pp. 398-407 ◽  
Author(s):  
Hilary Bowman‐Smart ◽  
Julian Savulescu ◽  
Christopher Gyngell ◽  
Cara Mand ◽  
Martin B. Delatycki
Keyword(s):  
Ethical Issues ◽  
Prenatal Testing ◽  
Sex Selection ◽  
Non Invasive ◽  
Current Practices

scholarly journals Qualitative investigation of the factors that generate ambivalent feelings in women who give birth after receiving negative results from non-invasive prenatal testing

2020 ◽  
Author(s):  
Junko Yotsumoto ◽  
Akihiko Sekizawa ◽  
Satomi Inoue ◽  
Nobuhiro Suzumori ◽  
Osamu Samura ◽  
...  
Keyword(s):  
Genetic Counseling ◽  
Pregnant Women ◽  
Qualitative Data ◽  
Prenatal Testing ◽  
Qualitative Investigation ◽  
Anticipatory Anxiety ◽  
Related Factors ◽  
Non Invasive ◽  
Negative Results

Abstract Background: Women who receive negative results from non-invasive prenatal genetic testing (NIPT) may find that they later have mixed or ambivalent feelings, for example, feelings of accepting NIPT and regretting undergoing the test. This study aimed to investigate the factors generating ambivalent feelings among women who gave birth after having received negative results from NIPT. Methods: A questionnaire was sent to women who received a negative NIPT result, and a contents analysis was conducted focusing on ambivalent expressions for those 1562 women who responded the questionnaire. The qualitative data gathered from the questionnaire were analyzed using the N-Vivo software package. Results: Environmental factors, genetic counseling-related factors, and increased anticipatory anxiety, affected the feeling of ambivalence among pregnant women. Furthermore, pregnant women desired more information regarding the detailed prognosis for individuals with Down syndrome and living with them and/or termination, assuming the possibility that they were positive. Conclusions: Three major interrelated factors affected the feeling of ambivalence in women. High-lighting and discussing such factors during genetic counseling may resolve some of these ambivalences, thereby enhancing the quality of decisions made by pregnant women.

scholarly journals The Influence of Experiential Knowledge and Societal Perceptions on Decision-Making Regarding Non-Invasive Prenatal Testing (NIPT)

2020 ◽  
Author(s):  
Sophie Montgomery ◽  
Zaneta M. Thayer
Keyword(s):  
Decision Making ◽  
Qualitative Analysis ◽  
Genetic Information ◽  
Prenatal Testing ◽  
Phenomenological Approach ◽  
Experiential Knowledge ◽  
Emotional Impact ◽  
Decision Making Process ◽  
Structured Interviews ◽  
Non Invasive

Abstract Non-invasive prenatal testing (NIPT) allows women to access genetic information about their fetuses without the physical risk inherent to prior testing methods. The advent of NIPT technology has yielded concerns among bioethicists regarding the quality and process of informed consent, as the routinization of this technology could degrade the intentionality of women choosing whether to undergo testing. Prior studies evaluating the NIPT decision-making process have focused on the clinical encounter as the primary environment for acquisition of biomedical information and decision formation. While important, this conceptualization fails to consider how additional sources of knowledge, including both embodied and empathetic experiential knowledge, shape perceptions of risk and the societal use of NIPT. In order to address this issue, qualitative, semi-structured interviews with 25 women who had been offered NIPT were performed. Women were categorized by NIPT use/non-use, as well as whether their described decision-making process was routinized. Qualitative analysis of the data using a phenomenological approach was used to explore themes in the data, develop a framework of NIPT decision-making, and compare the perceptions of women with differential decision-making processes and outcomes. A framework for decision-making regarding NIPT was developed based on three emergent factors: perceptions of the societal use of NIPT, expected emotional impact of genetic information, and perceived utility of genetic information. Qualitative analysis revealed that perceptions of widespread use of NIPT, pervasive societal narratives of NIPT use as progressive and “forward-thinking,” and a perception of information as anxiety-relieving contributed to routinized uptake of NIPT. In contrast, women who displayed a lack of routinization expressed fewer stereotypes regarding the audience for NIPT and relied on communication with their social networks in-person and online to consider how they might use the information provided by NIPT. The findings of this study reveal the societal narratives and perceptions that shape differential decision-making regarding NIPT. Understanding and addressing these perceptions that influence NIPT decision-making, especially routinized uptake of NIPT, is important as the use and scope of this technology increases.

scholarly journals ‘A longitudinal room of possibilities’ – perspectives on the benefits of long-term preventive home visits: A qualitative study of nurses’ experiences

2019 ◽  
Vol 40 (1) ◽  
pp. 6-14
Author(s):  
Mette Tøien ◽  
Ida Torunn Bjørk ◽  
Lisbeth Fagerström
Keyword(s):  
Older Persons ◽  
Functional Decline ◽  
Home Visits ◽  
Healthcare Services ◽  
Service Planning ◽  
Structural Factors ◽  
Structured Interviews ◽  
Preventive Home Visits ◽  
Age Related

Preventive home visits carried out by healthcare professionals are intended to promote the health and independence of home-dwelling older persons and to prevent functional decline. The aim of this study was to describe nurses’ experiences of the benefits from long-term follow up with annual preventive home visits to older people in a Norwegian context. We conducted semi-structured interviews with nine nurses who performed the service. Manifest and latent content analysis revealed benefits within three themes: sustained ability to live independently and thrive despite age-related changes, eased transition to other healthcare services, and improved healthcare service planning. Two headlines describe the longitudinal processes involved in the creation of benefits: ‘The processes of establishing, sustaining, and widening a longitudinal room of possibilities’, and ‘The individualized health-promoting processes – the ongoing gardening work. Professional, contextual and structural factors influenced the nurses’ ability to support older persons’ changing needs during the aging process and thus their health and independence.

scholarly journals The influence of experiential knowledge and societal perceptions on decision-making regarding non-invasive prenatal testing (NIPT)

2020 ◽  
Vol 20 (1) ◽  
Author(s):  
Sophie Montgomery ◽  
Zaneta M. Thayer
Keyword(s):  
Decision Making ◽  
Genetic Information ◽  
Medical Center ◽  
Academic Medical Center ◽  
Prenatal Testing ◽  
Experiential Knowledge ◽  
Rural Setting ◽  
Emotional Impact ◽  
Structured Interviews ◽  
Non Invasive

Abstract Background Non-invasive prenatal testing (NIPT) allows women to access genetic information about their fetuses without the physical risk inherent to prior testing methods. The advent of NIPT technology has led to concerns regarding the quality and process of informed consent, as a view of NIPT as “routine” could impair women’s considered approach when choosing to undergo testing. Prior studies evaluating NIPT decision-making have focused on the clinical encounter as the primary environment for acquisition of biomedical information and decision formation. While important, this conceptualization fails to consider how additional sources of knowledge, including embodied and empathetic experiential knowledge, shape perceptions of risk and the societal use of NIPT. Methods In order to address this issue, qualitative, semi-structured interviews with 25 women who had been offered NIPT were performed. Participants came from a well-resourced, rural setting near a major academic medical center in the US. Women were categorized by NIPT use/non-use as well as whether their described decision-making process was perceived as making a significant decision requiring contemplation (“significant”) versus a rapid or immediate decision (“routinized”). A constructivist general inductive approach was used to explore themes in the data, develop a framework of NIPT decision-making, and compare the perceptions of women with differential decision-making processes and outcomes. Results A framework for decision-making regarding NIPT was developed based on three emergent factors: perceptions of the societal use of NIPT, expected emotional impact of genetic information, and perceived utility of genetic information. Analysis revealed that perceptions of widespread use of NIPT, pervasive societal narratives of NIPT use as “forward-thinking,” and a perception of information as anxiety-relieving contributed to routinized uptake of NIPT. In contrast, women who displayed a lack of routinization expressed fewer stereotypes regarding the audience for NIPT and relied on communication with their social networks to consider how they might use the information provided by NIPT. Conclusions The findings of this study reveal the societal narratives and perceptions that shape differential decision-making regarding NIPT in the U.S. context. Understanding and addressing these perceptions that influence NIPT decision-making, especially routinized uptake of NIPT, is important as the use and scope of this technology increases.

scholarly journals Hospital Information Systems (HIS) in the Examination Rooms and Wards: Doctors Perceived Positive Impact on Quality of Care and Patient Safety

2018 ◽  
Vol 7 (2.29) ◽  
pp. 871 ◽  
Author(s):  
Lizawati Salahuddin ◽  
Zuraini Ismail ◽  
. .
Keyword(s):  
Patient Safety ◽  
Quality Of Care ◽  
Information Systems ◽  
Positive Impact ◽  
Healthcare Services ◽  
Hospital Information Systems ◽  
Structured Interviews ◽  
Healthcare Organizations ◽  
The Impact

Hospital Information Systems [HIS] is developed to support healthcare organizations in providing efficient, quality, and safe healthcare services. The objective of this study is to identify and describe doctors’ perspective on the impact of HIS use in the examination rooms and wards on quality of care and patient safety. Semi-structured interviews were carried out with thirty one doctors from three Malaysian government hospitals. Thematic qualitative analysis was performed by using ATLAS.ti to deduce the relevant themes. HIS were commonly believed to improve quality of care and patient safety in terms of : [1] accessibility of patients’ record, [2] efficient patient-care, [3] well-structured report viewing, [4] less missing patients’ records, [5] legibility of patients’ records, and [6] safety features. In conclusion, the use of HIS in examination rooms and wards suggests to improve the quality of care and patient safety.  

Ethical Issues Relating to Prenatal Genetic Testing

2021 ◽  
Vol 66 (Special Issue) ◽  
pp. 141-141
Author(s):  
Adeline Perrot ◽  
◽  
Ruth Horn ◽  
◽  
◽  
...  
Keyword(s):  
Social Inclusion ◽  
Ethical Issues ◽  
Prenatal Testing ◽  
Chromosomal Anomalies ◽  
Reproductive Choice ◽  
Clinical Implementation ◽  
Policy Document ◽  
Non Invasive ◽  
Second Tier ◽  
Routine Antenatal Care

"Introduction: Non-invasive prenatal testing (NIPT) is a rapidly developing genomic technology that is constantly widening its scope and opening up new possibilities in reproductive medicine. Ten years after NIPT has been made commercially available, it is increasingly entering routine antenatal care as either a first- or second-tier test. In England, France and Germany, for example, NIPT has been made available free-of-charge as a second-tier test to women with a higher chance of common chromosomal anomalies. The clinical implementation of NIPT carries benefits but also raises important ethical questions. Our project analyses these questions within their specific contexts in England, France and Germany. Methods: As part of a wider research project, which will involve qualitative methods, we conducted a document analysis to compare arguments about, and regulations governing NIPT in the three countries in: law and policy document; public reports; medical press; academic literature; and media. Results: Despite the similarities between the three countries to offer NIPT as a second-tier screening tool, they exhibit differences with regard to their public discourses about prenatal genomics, screening policies, the risk-thresholds they use, professional regulations and laws. These differences have an impact on the way ethical issues emerge, and questions about the meaning of health, illness and disability, the scope of public health interventions, social inclusion and exclusion as well as reproductive choice are approached in each country. "

scholarly journals Improving Survivors’ Quality of Life Post-Treatment: The Perspectives of Rural Australian Cancer Survivors and Their Carers

Cancers ◽  
2021 ◽  
Vol 13 (7) ◽  
pp. 1600
Author(s):  
Kate M. Gunn ◽  
Ian Olver ◽  
Xiomara Skrabal Ross ◽  
Nathan Harrison ◽  
Patricia M. Livingston ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Rural Communities ◽  
Cancer Survivors ◽  
Cancer Treatment ◽  
Healthcare Services ◽  
Post Treatment ◽  
Structured Interviews ◽  
Treatment Pathways ◽  
Active Cancer

The transition from urban centres back to rural and remote communities can be challenging for rural cancer survivors after treatment. This study aimed to (a) provide deeper understanding of the experiences of rural survivors who have completed active cancer treatment and returned to their rural communities, and (b) determine strategies to re-orient existing services or develop new interventions to more appropriately meet rural survivors’ service preferences and needs. Semi-structured interviews were conducted with 22 adults (64% female) who lived outside of a metropolitan area and had completed active cancer treatment (n = 13), were the carer for a rural/remote cancer survivor (n = 6), or were both a survivor and carer (n = 3). Thematic analysis was conducted to identify dominant themes in the qualitative data. A range of physical, psychological and practical challenges that impact quality of life among rural survivors post-treatment were found. These challenges appeared to be compounded by a lack of trust in local rural healthcare services and a lack of clear post-treatment pathways to quality of life-enhancing support services. Acceptable strategies to overcome barriers included nurse-led, telephone-based, or face-to-face interventions, initiated and continued by the same service provider, and that included support to manage emotional challenges associated with post-treatment survivorship. The findings will inform the design of interventions to better meet rural cancer survivors’ post-treatment support needs.

scholarly journals Factors generating ambivalent feelings in women who gave birth after receiving a negative result on non-invasive prenatal testing: A qualitative study

2019 ◽  
Author(s):  
Junko Yotsumoto ◽  
Akihiko Sekizawa ◽  
Satomi Inoue ◽  
Nobuhiro Suzumori ◽  
Osamu Samura ◽  
...  
Keyword(s):  
Genetic Counseling ◽  
Pregnant Women ◽  
Qualitative Data ◽  
Prenatal Testing ◽  
Anticipatory Anxiety ◽  
Prenatal Genetic Testing ◽  
Related Factors ◽  
Non Invasive ◽  
Negative Results

Abstract Background: Some women with negative results on non-invasive prenatal genetic testing (NIPT) may have ambivalent feelings later. This study aimed to investigate the factors generating ambivalent feel-ings among women who gave birth after having received negative results on NIPT. Methods: A questionnaire was sent to women who received a negative NIPT result, and a contents analysis was conducted for those 1562 women who responded to the open-ended question. The con-tents of these qualitative data were analyzed using the N-Vivo software package. Results: Environmental factors, genetic counseling-related factors, and increased anticipatory anxiety affected the feeling of ambivalence among pregnant women. Furthermore, pregnant women desired more information regarding the detailed prognosis for individuals with Down syndrome and living with them and/or abortion, assuming the possibility that they were positive. Conclusions: Three major interrelated factors affected the feeling of ambivalence in women. High-lighting and discussing such factors during genetic counseling may resolve some of these ambivalences, thereby enhancing the quality of decisions made by pregnant women.

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