1,721 results on '"Informed choice"'
Search Results
2. Enabling decision-making: what assists people with motor neurone disease when they consider gastrostomy insertion?
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Hogden, Anne, Labra, Julie, and Power, Emma
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AMYOTROPHIC lateral sclerosis , *PERCUTANEOUS endoscopic gastrostomy , *BURDEN of care , *MEDICAL personnel , *QUALITY of life - Abstract
AbstractPurposeMaterials and methodsResultsConclusions\nIMPLICATIONS FOR REHABILITATIONThis study explores the views of people living with Motor Neurone Disease (MND) when they consider Percutaneous Endoscopic Gastrostomy (PEG) insertion, to understand their priorities and how their decisions were informed or supported.The study took place in single multidisciplinary specialised MND clinic in New South Wales, Australia. Nine people with MND (5 male and 4 female; age range 52–73 years; disease duration 6–99 months) who were considering, or had recently undergone PEG insertion, participated. Semi-structured interviews were conducted with participants to examine individual’s experience of decision-making about PEG. The data were synthesised and analysed thematically.Three main themes and two sub-themes captured participant views on their decision-making. The first,
“ What matters most to me,” comprised optimising quality of life and maintaining family membership. The second theme explored “Understanding PEG and the clinical pathway.” The third theme was “Thoughts on using a decision aid.”This study provides a foundation for future studies examining the longer-term outcomes of accepting, delaying or declining PEG. Insights from this study may be applicable to decision-making for any aspect of MND care where the outcomes or benefits are uncertain.People living with Motor Neurone Disease (MND) have complex and individual reasons for accepting or declining Percutaneous Endoscopic Gastrostomy (PEG).The quality of communication between people with MND and healthcare providers may be improved by a shared understanding of how people with MND view quality of life and carer burden in their own circumstances.Enhanced communication for informed choice and patient-centred decision-making have potential to reduce decision regret and support care pathways for those who decline PEG.People living with Motor Neurone Disease (MND) have complex and individual reasons for accepting or declining Percutaneous Endoscopic Gastrostomy (PEG).The quality of communication between people with MND and healthcare providers may be improved by a shared understanding of how people with MND view quality of life and carer burden in their own circumstances.Enhanced communication for informed choice and patient-centred decision-making have potential to reduce decision regret and support care pathways for those who decline PEG. [ABSTRACT FROM AUTHOR]- Published
- 2024
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3. Evaluating whether Prostate Cancer UK's risk checker is a help or hindrance to prostate-specific antigen testing policy: a mixed-methods study.
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Norori, Natalia, de Biase, Chiara, Wong, Yui Hang, Crabtree, Sadie Robson, Cox, Matt, Appleby, Esther, Seggie, Andrew, Brown, Rachel, and Rylance, Amy
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RISK assessment ,PATIENT education ,HEALTH literacy ,PROSTATE-specific antigen ,FOCUS groups ,HEALTH policy ,PROSTATE tumors ,PSYCHOLOGY of men ,CHI-squared test ,DESCRIPTIVE statistics ,RESEARCH methodology ,MEDICAL screening ,SOCIODEMOGRAPHIC factors ,PATIENT decision making ,DATA analysis software ,PATIENTS' attitudes ,DISEASE risk factors - Abstract
Background: The UK has an informed choice testing policy for prostate cancer. The prostate-specific antigen (PSA) blood test is available for free to any man aged ≥50 years who requests it and has been informed of the harms and benefits. This policy leads to differences in PSA testing rates, which can exacerbate health inequalities. Aim: To assess whether Prostate Cancer UK’s risk checker helps men at risk of prostate cancer make an informed choice about the PSA test. Design & setting: Mixed-methods study in the UK. Method: In total, 1181 men at risk, their partners, and clinical experts participated in surveys, focus groups, and one-to-one interviews. Data on risk checker completions by sociodemographic factors were analysed over time. Data from general practices that sent the risk checker to their patients were collected and analysed for service monitoring purposes. Results: There was a strong assumption that testing must be good, and therefore a need to emphasise the pros and cons of the test and that having it was the patient’s decision. Men believed their GP would invite them for PSA testing. On the impact of the risk checker, 79.6% of men who completed it had at least one prostate cancer risk factor; the average time they interacted with the information in the tool was 9 minutes 28 seconds; and 75.7% felt the tool had equipped them to make an informed choice. Conclusion: Online decision-making tools, such as the risk checker, can help reach men at high risk of prostate cancer and support them in making an informed choice about the PSA test. [ABSTRACT FROM AUTHOR]
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- 2024
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4. The Power of Numeric Evidence in Science Communication.
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Peters, Ellen and Bunquin, Jon Benedik
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SCIENTIFIC communication , *TRUST , *COGNITION , *DECISION making - Abstract
Advantages and disadvantages exist for presenting numeric information in science communication. On the one hand, public innumeracy and experts' concerns about providing numbers suggest not always showing them. On the other hand, people often prefer getting them, and their provision can increase comprehension, trust, and healthy behaviors while reducing risk overestimates and supporting decision-making autonomy. Presenting numeric facts without considering their comprehensibility and usability, however, is like throwing good money after bad. We summarize research concerning three theory-based strategies that improve the understanding and use of numbers by decreasing cognitive effort (e.g., doing the math for the audience), being consistent with principles of numeric cognition, and providing affective meaning. [ABSTRACT FROM AUTHOR]
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- 2024
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5. "I had no choice": A mixed‐methods study on access to care for vaginal breech birth.
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Schafer, Robyn, Dietrich, Mary S., Kennedy, Holly Powell, Mulvaney, Shelagh, and Phillippi, Julia C.
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VAGINA physiology , *HEALTH services accessibility , *SCALE analysis (Psychology) , *DELIVERY (Obstetrics) , *CRONBACH'S alpha , *T-test (Statistics) , *MEDICAL quality control , *MATERNAL health services , *RESEARCH funding , *INTERVIEWING , *DESCRIPTIVE statistics , *CHI-squared test , *CHILDBIRTH at home , *RESEARCH methodology , *BREECH delivery , *PATIENT decision making , *PATIENTS' attitudes - Abstract
Introduction: Although current recommendations support vaginal breech birth as a reasonable option, access to breech birth in US hospitals is limited. This study explored the experiences of decision‐making and perceptions of access to care in people who transferred out of the hospital system to pursue home breech birth. Methods: We conducted a mixed methods study of people with a singleton, term breech fetus who transferred out of the US hospital system to pursue home breech birth. Twenty‐five people completed an online demographic and psychosocial survey, and 23 (92%) participated in semi‐structured interviews. We used an interpretive description approach informed by situational analysis to analyze qualitative data about participants' experiences and perceived access to care. Results: Of 25 individuals who left the hospital system to pursue a home breech birth, most felt denied informed choice (64%) and threatened or coerced into cesarean (68%). The majority reported low or very low autonomy in decision‐making (n = 20, 80%) and high decisional satisfaction using validated measures. Many participants felt safer in a hospital setting but were not able to access care for planned vaginal breech hospital birth, despite extensive efforts. Participants felt "backed into a corner" and "forced into homebirth," perceiving a lack of access to safe and respectful care in the hospital system. Conclusion: Some service users believe that home birth is their only option when they cannot access hospital‐based care for vaginal breech birth. Current barriers to care for breech birth limit birthing people's autonomy and may be placing them and their infants at increased risk. [ABSTRACT FROM AUTHOR]
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- 2024
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6. Educators' perceptions of supporting parents of deaf and hard-of-hearing children.
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Goico, Sara A. and Montiegel, Kristella
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OCCUPATIONAL roles ,SENSORY perception ,INTERVIEWING ,ETHNOLOGY research ,FAMILIES ,TEACHERS ,THEMATIC analysis ,DEAFNESS ,EDUCATION of the deaf ,RESEARCH methodology ,HEARING disorders ,FAMILY support ,SOCIAL support ,DISCRIMINATION against people with disabilities ,VIDEO recording - Abstract
In this article, we address the question: How do educators of the deaf and hard-of-hearing (EODs) perceive their role vis-a-vis communication modality and educational philosophy of deaf and hard-of-hearing (D/HH) children? Using an ethnographic framework, we report on findings from semi-structured interviews conducted with 16 EODs across public, private, and state levels in California. Through thematic analysis of interview transcripts, we found that EODs have strongly adopted a perspective of supporting informed parent choice. Building on a relational sociology framework, we discuss how these efforts are impacted by ableism, which permeates the network of interdependent social relations and systems that constitute the larger D/HH field. In highlighting the socially structured and produced nature of the decision-making process for parents of D/HH children (Bourdieu, P. 1977. Outline of a theory of practice. Cambridge University Press), we argue that to support informed parent choice more effectively, the entire system of relations would need to reflect on the way in which ableism and audism are pervasive throughout the system. [ABSTRACT FROM AUTHOR]
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- 2024
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7. Asymmetry in contraceptive information at two sites in Burkina FasoAJOG Global Reports at a Glance
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Leigh Senderowicz, ScD, Brooke W. Bullington, BA, Nathalie Sawadogo, PhD, and Katherine Tumlinson, PhD
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Burkina Faso ,counseling ,family planning ,global health ,informed choice ,provider bias ,Gynecology and obstetrics ,RG1-991 - Abstract
Background: Family planning programs are foundationally important to public health, but like any medical intervention, contraception has drawbacks in addition to its benefits. Knowledge of these drawbacks in addition to benefits is essential for informed choice. Despite a general consensus among family planning researchers and providers that contraceptive counseling should be unbiased, little quantitative research has assessed the extent of bias in contraceptive counseling, and in people's contraceptive knowledge more broadly. Objective: To understand the extent to which women report being told more about the advantages of contraception than the disadvantages—a concept we call “asymmetry” in contraceptive counseling, at two research sites in Burkina Faso. Methods: We use data from a cross-sectional population-based survey of 3,929 women residing in the catchment areas of the Ouagadougou (urban) and the Nouna (rural) Health and Demographic Surveillance Systems in Burkina Faso. We use descriptive statistics to explore asymmetry in knowledge of the benefits/advantages and risks/disadvantages of contraceptive use overall, as well as method-specific asymmetry among current method users regarding their counseling experience. Findings: Results show substantial asymmetry in knowledge of advantages/benefits of contraception compared to disadvantages/risks. 86% of respondents said they could name any advantage of family planning, while half of that proportion (43%) could name any disadvantage. We find a similarly stark asymmetry in method-specific results among contraceptive users, especially for hormonal/biomedical methods. We also find substantial variation between research sites, with urban respondents much less likely to self-report complete family planning knowledge than their rural counterparts. Conclusion: Our results suggest that family planning messaging in Burkina Faso may place an emphasis on the advantages without a commensurate focus on disadvantages. Family planning programs worldwide must ensure that people can make informed choices based on balanced, accurate information about both the benefits and the disadvantages of contraception.
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- 2024
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8. Lacking knowledge or lacking support? An informed choice study of support for mileage fees as an alternative to gas taxes
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Clare Nelson and Gregory Rowangould
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Education ,Informed choice ,Mileage fees ,Gas tax ,Transportation funding ,Public policy opinion ,Transportation and communications ,HE1-9990 - Abstract
Governing bodies are continuing to research, conduct pilot programs, and adopt policy for mileage fees as alternatives to the gas tax, yet public support remains critically low. Lack of support generally stems from assumptions that mileage fees will cost more, be inequitable for rural and low-income households, and will impede privacy through invasive mileage collection. In this study, we assess the extent to which these perceptions of mileage fees, which ultimately shape policy opinion formation, are related to low levels of information or lacking information. We also evaluate the unique aspects of policy opinion formation, including engagement with both individual and aggregate ideologies and material self-interests. Our survey instrument encourages issue engagement through iterative voting and educational experiences, through which we see information has a statistically significant effect on policy opinions and changes what we think we know about public support for mileage fees. Across the educational experiences, which include policy-relevant information provided through videos and tailored annual cost calculations for the policy alternatives, 24% of respondents changed their opinion by the end of the study, and 44% changed their opinion at least once during the study. We conclude with suggestions for public opinion polling around controversial policies that apply to both researchers and practitioners looking to engage with their constituents.
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- 2024
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9. Expanding contraceptive choice among first-time mothers age 15–24 in Kinshasa: The Momentum pilot project
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Gage, Anastasia J, Wood, Francine Eva, and Gay, Rianne
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Paediatrics ,Biomedical and Clinical Sciences ,Behavioral and Social Science ,Pediatric Research Initiative ,Adolescent Sexual Activity ,Pediatric ,Teenage Pregnancy ,Contraception/Reproduction ,Prevention ,Clinical Research ,Good Health and Well Being ,informed choice ,contraceptive use ,first-time mothers ,long-acting reversible contraception ,youth ,Democratic Republic of the Congo ,Biomedical and clinical sciences ,Health sciences ,Psychology - Abstract
IntroductionEvidence shows that an expanded range of contraceptive methods, client-centered comprehensive counseling, and voluntary informed choice are key components of successful family planning programs. This study assessed the effect of the Momentum project on contraceptive choice among first-time mothers (FTMs) age 15-24 who were six-months pregnant at baseline in Kinshasa, Democratic Republic of the Congo, and socioeconomic determinants of the use of long-acting reversible contraception (LARC).MethodsThe study employed a quasi-experimental design, with three intervention health zones and three comparison health zones. Trained nursing students followed FTMs for 16 months and conducted monthly group education sessions and home visits consisting of counseling and provision of a range of contraceptive methods and referrals. Data were collected in 2018 and 2020 through interviewer-administered questionnaires. The effect of the project on contraceptive choice was estimated using intention-to-treat and dose-response analyses, with inverse probability weighting among 761 modern contraceptive users. Logistic regression analysis was used to examine predictors of LARC use.ResultsProject effect was detected on receipt of family planning counseling, obtaining the current contraceptive method from a community-based health worker, informed choice, and current use of implants vs. other modern methods. There were significant dose-response associations of the level of exposure to Momentum interventions and the number of home visits with four of five outcomes. Positive predictors of LARC use included exposure to Momentum interventions, receipt of prenatal counseling on both birth spacing and family planning (age 15-19), and knowledge of LARCs (age 20-24). The FTM's perceived ability to ask her husband/male partner to use a condom was a negative predictor of LARC use.DiscussionGiven limited resources, expanding community-based contraceptive counseling and distribution through trained nursing students may expand family planning access and informed choice among first-time mothers.
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- 2023
10. Barriers to an effective voucher programme for community-based aged care: a professional perspective.
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Kan, Wing Shan
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ELDER care , *COMMUNITY health services , *COMMUNITY support , *SELF-efficacy , *QUALITATIVE research , *MEDICAL case management , *LONG-term health care , *INTERVIEWING , *DECISION making , *PERSONAL space , *JUDGMENT sampling , *PROFESSIONS , *PATIENT-centered care , *SOUND recordings , *THEMATIC analysis , *SOCIAL networks , *RESEARCH methodology , *FAMILY support , *SELF-consciousness (Awareness) , *MEDICAL needs assessment - Abstract
Long-term care for older people is increasingly turning to consumer-directed approaches. As a case in point, the Hong Kong Government recently implemented a new voucher programme for community-based aged care based on a consumer-directed approach: the Community Care Service Voucher for the Elderly (CCSV). The objectives of this study were to explore the lived experience of professional workers vis-à-vis the new programme and to identify barriers to effective voucher use by older people in Hong Kong. In-depth individual interviews were conducted with 16 professionals who had primary responsibility for the voucher programme for community-based aged care. The interview guide covered five main areas: (a) professional's perception and experience on the voucher programme; (b) the decision-making process around the voucher programme; (c) personal capacities of older people; (d) family support and social networks; and (e) institutional support. Findings indicate several barriers to effective use of the CCSV including: lack of self-awareness of service needs, lower education level, poor health condition, lack of financial resources, lack of family support, inadequate family involvement in decision-making, lack of peer and professional support, lack of available services and poor service accessibility. Suggestions for strengthening the voucher programme include institution of a case management model and public education. Different factors or elements are required to facilitate older people to make sound and informed choices, and a case manager can assist in combining different resources and forms of support towards effective use of the CCSV. [ABSTRACT FROM AUTHOR]
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- 2024
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11. Educational tools support informed decision-making for genetic carrier screening in a heterogenic Israeli population.
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Gafni-Amsalem, Chen, Aboleil-Zoubi, Olfat, Chervinsky, Elena, Aleme, Ola, Khayat, Morad, Bashir, Husam, Perets, Lilach Peled, Mamluk, Efrat, Hakrosh, Shadia, Kurtzman, Shoshi, Tamir, Liron, Baram-Tsabari, Ayelet, and Shalev, Stavit A.
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Reproductive genetic carrier screening (RGCS) aims to provide couples with information to make informed decisions. Since 2013, the Israeli Carrier Screening Program has been offered routinely and free of charge to all Israelis of reproductive age, personalized based on religion, ethnicity, and village/tribe where a disorder is frequent. This study evaluated the impact of two educational tools on an informed choice on RGCS uptake and satisfaction with counselling within a heterogeneous population in northern Israel. Participants from diverse sociodemographic population groups were randomly assigned to watch an animated film, read a booklet conveying the same information, or receive no information before counselling for RGCS, and asked to complete pre- and post-counselling questionnaires. A higher informed-decision rate was demonstrated in the film (n=93/141, 66%) and booklet (n=88/131, 67%) groups vs. the non-intervention group (n=62/143, 43%) (P<0.001), assessed by the Multidimensional Measure of Informed Choice. Multivariate logistic regression analysis revealed that allocation to an intervention group, Jewish ethnicity and higher education level, best predicted informed choice. Most participants expressed high levels of satisfaction with the counselling process, regardless of group assignment. While only a minority of participants reported seeking information prior to visiting the clinic, the pre-counselling information interventions were well accepted. Pre-counselling self-learning educational tools should be promoted, easily available, and adjusted linguistically and culturally to targeted populations, to avoid unwanted "automatic" compliance of tested individuals and maximize the potential of informed decision-making. Our study can be applied to other countries where majority and minority ethnic groups access genetic services. [ABSTRACT FROM AUTHOR]
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- 2024
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12. Evaluating whether Prostate Cancer UK’s risk checker is a help or hindrance to prostate-specific antigen testing policy: a mixed-methods study
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Natalia Norori, Chiara de Biase, Yui Hang Wong, Sadie Robson Crabtree, Matt Cox, Esther Appleby, Andrew Seggie, Rachel Brown, and Amy Rylance
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prostate cancer ,prostatic neoplasms ,prostate-specific antigen ,informed choice ,male ,Medicine (General) ,R5-920 - Abstract
Background: The UK has an informed choice testing policy for prostate cancer. The prostate-specific antigen (PSA) blood test is available for free to any man aged ≥50 years who requests it and has been informed of the harms and benefits. This policy leads to differences in PSA testing rates, which can exacerbate health inequalities. Aim: To assess whether Prostate Cancer UK’s risk checker helps men at risk of prostate cancer make an informed choice about the PSA test. Design & setting: Mixed-methods study in the UK. Method: In total, 1181 men at risk, their partners, and clinical experts participated in surveys, focus groups, and one-to-one interviews. Data on risk checker completions by sociodemographic factors were analysed over time. Data from general practices that sent the risk checker to their patients were collected and analysed for service monitoring purposes. Results: There was a strong assumption that testing must be good, and therefore a need to emphasise the pros and cons of the test and that having it was the patient’s decision. Men believed their GP would invite them for PSA testing. On the impact of the risk checker, 79.6% of men who completed it had at least one prostate cancer risk factor; the average time they interacted with the information in the tool was 9 minutes 28 seconds; and 75.7% felt the tool had equipped them to make an informed choice. Conclusion: Online decision-making tools, such as the risk checker, can help reach men at high risk of prostate cancer and support them in making an informed choice about the PSA test.
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- 2024
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13. Would shared decision-making be useful in breast cancer screening programmes? A qualitative study using focus group discussions to gather evidence from French women with different socioeconomic backgrounds
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Laureline Guigon, Laura X. Gil Sánchez, Anne-Sophie Petit, Alice Le Bonniec, Partha Basu, Christelle M. Rodrigue, Marie Préau, Patricia Soler-Michel, and Patricia Villain
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Breast cancer screening ,Decision aid ,France ,Informed choice ,Socioeconomic ,Women ,Public aspects of medicine ,RA1-1270 - Abstract
Abstract Background To inform the development of an online tool to be potentially used in shared decision-making about breast cancer screening, French women were questioned about participation in breast cancer screening, the health professional’s role, and their perceptions of the proposed tool. Methods We organised focus group discussions with 55 French women. Two different strategies were used to recruit women from high and low socioeconomic backgrounds. We applied both inductive and deductive approaches to conduct a thematic analysis of the discussions. We analysed the responses by using the main determinants from different health behaviour models and compared the two groups. Results Independently of socioeconomic status, the most important determinant for a woman’s participation in breast cancer screening was the perceived severity of breast cancer and the perceived benefits of its early detection by screening. Cues to action reported by both groups were invitation letters; recommendations by health professionals, or group/community activities and public events were reported by women from high and low socioeconomic backgrounds, respectively. Among other positive determinants, women from high socioeconomic backgrounds reported making informed decisions and receiving peer support whereas women from low socioeconomic backgrounds reported community empowerment through group/community events. Fear of cancer was reported as a barrier in both groups. Among other barriers, language issues were reported only by women from low socioeconomic backgrounds; women from high socioeconomic backgrounds reported breast cancer screening-related risks other than overdiagnosis and/or overtreatment. Barriers to accessing the online tool to be developed were mainly reported by women from high socioeconomic backgrounds. Conclusion Limitations in implementing shared decision-making for women from low socioeconomic backgrounds were highlighted. An online tool that is suitable for all women, regardless of socioeconomic status, would provide “on-demand” reliable and tailored information about breast cancer screening and improve access to health professionals and social exchanges.
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- 2024
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14. Patient-reported health-related quality of life outcomes following mastectomy for breast cancer, with immediate, delayed or no breast reconstruction: Four-year follow-up from a prospective cohort study
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Kathy Dempsey, Erin Mathieu, Meagan Brennan, Kylie Snook, Julia Hoffman, Ian Campbell, Jenni Scarlet, Heather Flay, April Wong, Frances Boyle, Madeleine King, and Andrew Spillane
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Health-related quality of life ,Breast cancer ,Mastectomy ,Breast reconstruction ,Patient preferences ,Informed choice ,Neoplasms. Tumors. Oncology. Including cancer and carcinogens ,RC254-282 - Abstract
Background: Breast reconstruction (BR) improves women's health-related quality of life (HRQOL) following mastectomy for breast cancer, yet factors contributing to improved HRQOL remain unclear. This study aimed to explore the overall impact of mastectomy with or without BR on participants' perceptions of HRQOL over time in a cohort of women with high-risk breast cancer; to examine differences in mean HRQOL scores between immediate BR, delayed BR and no BR groups; to assess the influence of patient characteristics potentially associated with HRQOL scores; and to determine the feasibility of long-term collection of patient-reported outcome measures in clinical settings. Methods: A prospective, longitudinal study of 100 women with high-risk breast cancer who underwent mastectomy with or without breast reconstruction and were likely to require post-mastectomy radiotherapy. Four validated patient-reported questionnaires, comprising 21 outcome measures relating to HRQOL, administered at baseline and up to 4 years post-mastectomy. Demographic, clinical and surgical data extracted from patient medical records. Results: Consistently significant declines in perceptions of future health and arm symptoms, consistently significant improvements in treatment side effects, breast symptoms and fatigue, as well as significant improvements, compared to baseline, in social functioning and financial difficulties at 48 months. No significant differences in mean HRQOL scores between women given a choice of reconstructive options. Conclusion: Similar trajectories of HRQOL scores were found in women with high-risk breast cancer who were offered a choice of BR. Informed choice may be an independent contributing factor in long-term maintenance of most HRQOL indicators at their pre-mastectomy levels.
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- 2023
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15. Informed choice and routinization of the second-trimester anomaly scan: a national cohort study in the Netherlands
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Eline E.R. Lust, Kim Bronsgeest, Lidewij Henneman, Neeltje Crombag, Caterina M. Bilardo, Elsbeth H. van Vliet-Lachotzki, Robert-Jan H. Galjaard, Esther Sikkel, Monique C. Haak, and Mireille N. Bekker
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Informed choice ,Second-trimester anomaly scan ,Mid-trimester scan ,Decision making ,Reproductive autonomy ,Gynecology and obstetrics ,RG1-991 - Abstract
Abstract Background Since 2007 all pregnant women in the Netherlands are offered the second-trimester anomaly scan (SAS) in a nationwide prenatal screening program. This study aims to assess the level of informed choice of women opting for the SAS and to evaluate the presence of routinization 16 years after its implementation. It further explores decisional conflict and women’s decision making. Methods This prospective national survey study consisted of an online questionnaire which was completed after prenatal counseling and before undergoing the SAS. Informed choice was measured by the adapted multidimensional measure of informed choice (MMIC) and was defined in case women were classified as value-consistent, if their decision for the SAS was deliberated and made with sufficient knowledge. Results A total of 894/1167 (76.6%) women completed the questionnaire. Overall, 54.8% made an informed choice, 89.6% had good knowledge, 59.8% had deliberated their choice and 92.7% held a positive attitude towards the SAS. Women with low educational attainment (p=0.004) or respondents of non-Western descent (p=0.038) were less likely to make an informed choice. Decisional conflict was low, with a significantly lower decisional conflict score in women that made an informed choice (p
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- 2023
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16. Counseling in a Changing World of Genetics
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Bilardo, C. M. Katia and Di Renzo, Gian Carlo, editor
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- 2023
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17. Turning the promise of multipurpose prevention technologies into a market reality: a commentary.
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Dam, Anita, Schueller, Jane, Peine, Kevin J., Mason, Jennifer, Dorward, Emily, and Vij, Ashley
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UNPLANNED pregnancy ,HIV prevention ,NEW product development ,FAMILY planning ,RESEARCH personnel - Abstract
The promise of multipurpose prevention technologies (MPTs) for the prevention of HIV and unintended pregnancy are on the horizon. While many are still in clinical development, others are closer to becoming a realistic, accessible option for users, like the dual prevention pill (DPP). Researchers, governments, donors, and implementers will have to collaboratively address systemic challenges to successfully introduce and scale-up MPTs. To ensure the rollout of MPTs is successful, the global community should address user and country-specific needs, coordinate with advocates and policymakers, and set a realistic plan for product introduction and scale-up that considers the needs of both family planning (FP) and HIV programs, while laying the groundwork for future new product introduction. To achieve these aims, global and regional stakeholder coordination should emphasize country-led, person-centered decision-making while addressing: (1) procurement and supply chain barriers; (2) the potential burden on health systems; and (3) the impact on current programs. [ABSTRACT FROM AUTHOR]
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- 2023
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18. Women's experiences of induction of labour during the COVID-19 pandemic: a cross-sectional survey.
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Cross-Sudworth, Fiona, Taylor, Beck, Davidson, Louisa, Quinn, Laura, Wright, Joselle, Vitue, Ella, and Kenyon, Sara
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INDUCED labor (Obstetrics) , *ATTITUDES of mothers , *CROSS-sectional method , *RESEARCH methodology , *FISHER exact test , *EXPERIENCE , *QUESTIONNAIRES , *CHI-squared test , *DESCRIPTIVE statistics , *RESEARCH funding , *DATA analysis software , *THEMATIC analysis , *COVID-19 pandemic - Abstract
Background/Aims Induction of labour is an increasingly common intervention. This study's aim was to explore women's experiences of induction, in particular of decision making and choice. Methods A cross-sectional study was carried out with women who were induced with live, term infant(s) in two urban trusts. Their experiences were assessed using a postal survey that included the birth satisfaction scale and open questions on women's experiences. Chi-squared and Fisher's exact tests were used to test for associations between aspects of the induction process and women's characteristics (age, parity, ethnic group). Qualitative data were analysed thematically. Results Half (52.9%) of the respondents reported waiting to start induction. The majority felt sufficiently involved in decision making (62.1%) and choice (59.6%). Most reported having enough information about the reason for (82%) and process of (83%) induction. The qualitative themes were emotional response, communication, feeling unheard, quality of care and the negative impact of COVID-19 policies. Conclusions Women's overall experiences were positive. Improvements should focus on reducing delays to induction. [ABSTRACT FROM AUTHOR]
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- 2023
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19. Randomized Controlled Assays and Randomized Controlled Trials: A Category Error With Consequences.
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Healy, David
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RANDOMIZED controlled trials , *THALIDOMIDE - Abstract
In 1962, in the wake of the thalidomide crisis, a new Amendment to the Food and Drugs Act introduced Randomized Controlled Trials (RCTs) into the regulations governing the licensing of medicines. It was believed that requiring companies to demonstrate their products were effective through RCTs would contribute to safety. In 1962, RCTs were a little-understood technique. It was thought trials would produce generalizable knowledge with similar outcomes for successive trials. As a result, regulators adopted a criterion of two positive placebo-controlled trials for licensing medicine. For physicians keen to stall therapeutic bandwagons and eliminate ineffective treatments, a negative RCT result was a good outcome. When made a gateway to the market, companies, in contrast, had an interest to transform RCTs from assessments that might throw up unexpected or negative results into Randomized Controlled Assays (RCAs) that efficiently generated approvable results. This article outlines the differences between RCTs and RCAs, the steps companies took to transform RCTs into RCAs, and the consequences of this transformation. [ABSTRACT FROM AUTHOR]
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- 2023
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20. Screening for cancer beyond recommended upper age limits: views and experiences of older people.
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Smith, Jenna, Dodd, Rachael H, Naganathan, Vasi, Cvejic, Erin, Jansen, Jesse, Wallis, Katharine, and McCaffery, Kirsten J
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BREAST tumor diagnosis , *AGE distribution , *RESEARCH methodology , *EARLY detection of cancer , *INTERVIEWING , *COLORECTAL cancer , *PATIENTS' attitudes , *QUALITATIVE research , *CONCEPTUAL structures , *SOUND recordings , *DESCRIPTIVE statistics , *THEMATIC analysis , *PROSTATE tumors , *OLD age ,CERVIX uteri tumors - Abstract
Background Internationally, screening programmes and clinical practice guidelines recommend when older adults should stop cancer screening using upper age limits, but it is unknown how older adults view these recommendations. Objective To examine older adults' views and experiences about continuing or stopping cancer screening beyond the recommended upper age limit for breast, cervical, prostate and bowel cancer. Design Qualitative, semi-structured interviews. Setting Australia, telephone. Subjects A total of 29 community-dwelling older adults (≥70-years); recruited from organisation newsletters, mailing lists and Facebook advertisements. Methods Interviews were audio-recorded, transcribed and analysed thematically using Framework Analysis. Results Firstly, older adults were on a spectrum between trusting recommendations and actively deciding about cancer screening, with some who were uncertain. Secondly, participants reported limited in-depth discussions with health professionals about cancer screening. In primary care, discussions were focused on checking they were up to date with screening or going over results. Discussions mostly only occurred if older adults initiated themselves. Finally, participants had a socially- and self-constructed understanding of screening recommendations and potential outcomes. Perceived reasons for upper age limits were cost, reduced cancer risk or ageism. Risks of screening were understood in relation to their own social experiences (e.g. shared stories about friends with adverse outcomes of cancer treatment or conversations with friends/family about controversy around prostate screening). Conclusions Direct-to-patient information and clinician support may help improve communication about the changing benefit to harm ratio of cancer screening with increasing age and increase understanding about the rationale for an upper age limit for cancer screening programmes. [ABSTRACT FROM AUTHOR]
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- 2023
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21. Patient-reported health-related quality of life outcomes following mastectomy for breast cancer, with immediate, delayed or no breast reconstruction: Four-year follow-up from a prospective cohort study.
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Dempsey, Kathy, Mathieu, Erin, Brennan, Meagan, Snook, Kylie, Hoffman, Julia, Campbell, Ian, Scarlet, Jenni, Flay, Heather, Wong, April, Boyle, Frances, King, Madeleine, and Spillane, Andrew
- Subjects
MAMMAPLASTY ,QUALITY of life ,MASTECTOMY ,BREAST cancer ,COHORT analysis ,LONGITUDINAL method - Abstract
Breast reconstruction (BR) improves women's health-related quality of life (HRQOL) following mastectomy for breast cancer, yet factors contributing to improved HRQOL remain unclear. This study aimed to explore the overall impact of mastectomy with or without BR on participants' perceptions of HRQOL over time in a cohort of women with high-risk breast cancer; to examine differences in mean HRQOL scores between immediate BR, delayed BR and no BR groups; to assess the influence of patient characteristics potentially associated with HRQOL scores; and to determine the feasibility of long-term collection of patient-reported outcome measures in clinical settings. A prospective, longitudinal study of 100 women with high-risk breast cancer who underwent mastectomy with or without breast reconstruction and were likely to require post-mastectomy radiotherapy. Four validated patient-reported questionnaires, comprising 21 outcome measures relating to HRQOL, administered at baseline and up to 4 years post-mastectomy. Demographic, clinical and surgical data extracted from patient medical records. Consistently significant declines in perceptions of future health and arm symptoms, consistently significant improvements in treatment side effects, breast symptoms and fatigue, as well as significant improvements, compared to baseline, in social functioning and financial difficulties at 48 months. No significant differences in mean HRQOL scores between women given a choice of reconstructive options. Similar trajectories of HRQOL scores were found in women with high-risk breast cancer who were offered a choice of BR. Informed choice may be an independent contributing factor in long-term maintenance of most HRQOL indicators at their pre-mastectomy levels. • Reconstruction following mastectomy improves women's health-related quality of life • No quality of life differences found between women with or without reconstruction • Type or timing of reconstruction was also not significant • Factors contributing to improved quality of life after four years remain unclear • Informed choice may be a key factor in women maintaining their quality of life [ABSTRACT FROM AUTHOR]
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- 2023
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22. Harvey and Gurvir's Law: Ontario Bill for Quality Prenatal Information about Down Syndrome: Terminology, Feasibility, and Ethical Issues.
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Huberfeld, Nicole, McClain, Linda C., Ahmed, Aziza, Lemoine, Marie-Eve, Laberge, Anne-Marie, Malo, Marie-Françoise, Cloutier, Stéphanie, Roy, Marie-Christine, Birko, Stanislav, Daigle, Andréa, and Ravitsky, Vardit
- Subjects
- *
PRENATAL diagnosis , *COUNSELING , *DOWN syndrome , *SOCIAL stigma , *MISINFORMATION - Abstract
Harvey and Gurvir's Law is a bill proposed to the Legislative Assembly of Ontario (Canada) to reduce stigma and bias associated with Down syndrome, by developing and disseminating quality information about Down syndrome in the context of prenatal testing. [ABSTRACT FROM AUTHOR]
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- 2023
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23. Female sterilisation in India: Examining the role of women's own decision making and information given to client.
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Jana, Arjun and Shekhar, Chander
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WOMEN'S roles , *UNPLANNED pregnancy , *DECISION making , *MARRIED women , *CONTRACEPTION , *CONTRACEPTIVES - Abstract
India has a very high prevalence of female sterilisation compared to other countries in the world, with a prevailing situation of very low level of information about contraceptive options given to women. It is well established in demographic research that, there exists a strong association between knowledge of contraceptive methods and type of contraception chosen. Present study uses data from 3 consecutive rounds of National Family Health Survey (3, 4 & 5). The sample contains currently married women who started using the current method 5 years prior to each round of survey. Multilevel Logistic Regression and Fairlie Decomposition Model are used to analyse the effect of information given to respondents and decision-making power regarding contraceptive methods on choice of female sterilisation. Women, who are informed about available methods, have lower chance (45.8%, 37.5% & 40% for NFHS 3, 4 & 5 respectively) to opt for sterilisation after controlling all other factors. If woman is the sole decision maker for contraceptive choice, the chance of sterilisation reduces than cases where decision is taken only by husband or jointly. Information about other methods also contributes towards reducing the chance of female sterilisation over the time. Information about contraceptive methods is found to be a major factor in controlling choice of temporary or permanent method. Thus, major focus for the policy makers should be to make information regarding contraceptives more accessible for women. [ABSTRACT FROM AUTHOR]
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- 2023
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24. Informed choice and its associated factors among women received immediate postpartum long-acting reversible contraceptives at public hospitals in Sidama Regional State, Ethiopia, 2022
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Beniyam Samuel, Berhan Tsegaye, Dubale Dulla, Amdehiwot Aynalem, Eskinder Israel, and Meless Gebrie
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Informed choice ,Long-acting reversible contraceptives ,Method information index plus ,Sidama Ethiopia ,Gynecology and obstetrics ,RG1-991 - Abstract
Abstract Introduction It is crucial to ensure the quality of family planning (FP) services through women's informed choice during the provision of long-acting reversible contraceptives. In Ethiopia, previous studies have focused on the quality of family planning services. However, much emphasis was not given to the informed choice of immediate postpartum long-acting reversible contraceptives (LARCs), particularly in the study area. This study determines the mangnitude of informed choice and associated factors among immediate postpartum women who received long-acting reversible contraceptives. Method An institution-based cross-sectional study was conducted from July 1 – August 31, 2022, among 373 immediate postpartum women who received long-acting reversible contraceptives at public hospitals in the Sidama regional state, Ethiopia. Women were selected and interviewed using a systematic random sampling technique and via a structured interviewer-administered questionnaire respectively. Data was collected using Kobo Toolbox software and then exported to the Statistical Package for Social science (SPSS) version 25 for analysis. A logistic regression model was used to identify the predictor variables. Results The magnitude of informed choice of long-acting reversible contraceptives was 23.5% (95% CI (19.6%–27.7%)). The messages through posters about long-acting reversible contraceptives at the facility (AOR 3.6, 95% CI (1.92–6.79), postpartum family planning counseling during antenatal care (AOR 2.8, 95% CI (1.2–6.4), previous contraceptive use (AOR 3.23, 95% CI (1.12–9.33), and being secondary and higher educated (AOR 2.92, 95%CI (1.27–6.73) and (AOR 5.7, 95% CI (2.267–14.669) respectively were factors significantly associated with informed choice during immediate postpartum family planning service. Conclusion and recommendation In the current study, nearly one-fourth of women were informed about LARCs. Socio-demographic factors, prior use of contraception, exposure to posters that have messages about long-acting reversible contraceptives, and postpartum family planning counselling during antenatal care are factors that affect the woman's ability to make an informed choice. There should be immediate PPFP counselling that focuses on a full range of contraceptive method choices to facilitate postpartum women's ability to make informed choices.
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- 2023
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25. What knowledge is required for an informed choice related to non‐invasive prenatal screening?
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Griffin, Erin, Hooker, Gillian, Grace, Matthew, Kaphingst, Kimberly, Velez Edwards, Digna, Zhao, Zhiguo, and Slamon, Jill
- Abstract
Non‐invasive prenatal screening (NIPS) using cell‐free DNA is a screening test for fetal aneuploidy offered by a variety of prenatal healthcare providers. Guidelines for genetic screening consistently recommend that providers facilitate informed choices, which have been associated with better psychological and clinical outcomes than uninformed choices. The multidimensional measure of informed choice (MMIC) is a widely used and theory‐based measure that combines knowledge, values, and behavior to classify decisions as either informed or uniformed. We implemented a previously validated version of the MMIC for women offered NIPS to describe the choices made by women receiving prenatal care at the Vanderbilt University Medical Center. The survey included the Ottawa Decisional Conflict scale, an outcome measure used for validation of choice categorization. We found that most women (87%) made an informed choice about NIPS. Of the women categorized as uninformed, 67% had insufficient knowledge, and 33% had an attitude discordant with their decision. The vast majority of respondents (92.5%) underwent NIPS and had a positive attitude toward screening (94.3%). Ethnicity (p = 0.04) and education (p = 0.01) were found to be significantly associated with informed choice. Decisional conflict was extremely low among all participants, with only 5.6% of all participants demonstrating any form of decisional conflict, and all being categorized as having made an informed choice. This study suggests that pre‐test counseling by a genetic counselor results in high rates of informed choice and low‐decisional conflict amongst women offered NIPS by genetic counselors, though more research is required to determine if rates of informed choice remain high when NIPS is offered by other prenatal providers. [ABSTRACT FROM AUTHOR]
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- 2023
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26. Investigating informed choice in screening programmes: a mixed methods analysis
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Natalie Tyldesley-Marshall, Amy Grove, Iman Ghosh, Laura Kudrna, Abimbola Ayorinde, Megha Singh, Edward Mehaan, Aileen Clarke, Sian Taylor-Phillips, and Lena Al-Khudairy
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Screening ,Fetal anomalies ,Cancer ,Public policy ,Informed choice ,Mixed methods ,Public aspects of medicine ,RA1-1270 - Abstract
Abstract Background Screening programmes aim to identify individuals at higher risk of developing a disease or condition. While globally, there is agreement that people who attend screening should be fully informed, there is no consensus about how this should be achieved. We conducted a mixed methods study across eight different countries to understand how countries address informed choice across two screening programmes: breast cancer and fetal trisomy anomaly screening. Methods Fourteen senior level employees from organisations who produce and deliver decision aids to assist informed choice were interviewed, and their decision aids (n = 15) were evaluated using documentary analysis. Results We discovered that attempts to achieve informed choice via decision aids generate two key tensions (i) between improving informed choice and increasing uptake and (ii) between improving informed choice and comprehensibility of the information presented. Comprehensibility is fundamentally at tension with an aim of being fully informed. These tensions emerged in both the interviews and documentary analysis. Conclusion We conclude that organisations need to decide whether their overarching aim is ensuring high levels of uptake or maximising informed choice to participate in screening programmes. Consideration must then be given to all levels of development and distribution of information produced to reflect each organisation’s aim. The comprehensibility of the DA must also be considered, as this may be reduced when informed choice is prioritised.
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- 2022
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27. Islamic Perspectives Islamic Perspectives on Death by Neurologic Criteria
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Padela, Aasim I., Rashid, Rafaqat, Dubljević, Veljko, Series Editor, Jotterand, Fabrice, Series Editor, Jox, Ralf J., Series Editor, Racine, Eric, Series Editor, Lewis, Ariane, editor, and Bernat, James L., editor
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- 2022
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28. Socio-psychological determinants of second trimester maternal pertussis vaccination acceptance in the Netherlands.
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Immink, Maarten M., van der Maas, Nicoline A.T., de Melker, Hester E., Ferreira, José A., and Bekker, Mireille N.
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- *
WHOOPING cough vaccines , *MATERNALLY acquired immunity , *HEALTH attitudes , *SECOND trimester of pregnancy , *MEDICAL personnel , *DPT vaccines - Abstract
• Intention is most predictive for second trimester Tdap vaccine acceptance. • Second vs third trimester Tdap vaccine acceptance yields comparable predictors. • Rejection of maternal vaccination as opposed to acceptance remains hard to predict. A maternal tetanus-diphtheria-and-acellular-pertussis (Tdap) vaccine is offered to all pregnant women in the Netherlands in their second trimester since December 2019. However, former studies solely investigated the socio-psychological factors that influence vaccine acceptance among pregnant women in the third trimester. We identified predicting factors for attitude, intention and acceptance of maternal Tdap vaccination during the second trimester of pregnancy. As part of a large prospective cohort study, women early in pregnancy completed a questionnaire on determinants regarding acceptance of maternal Tdap vaccination between 20 and 24w of gestation. The vaccine was offered after completion of the questionnaire. A random forest model and Receiver Operating Characteristics (ROC) analyses were carried out to identify the factors most predictive for vaccine acceptance on the whole data set, and also in sensitivity analysis on a subset reflecting the annual nationwide 70% vaccination uptake. Among 1158 participants who were offered a Tdap vaccination between 20 and 24w of gestation, 1098 (94.8%) accepted and 60 (5.2%) rejected the vaccine. Random forest analyses identified intention as most predictive for acceptance, followed by attitude towards vaccination, beliefs regarding safety, risk perception of severity of side effects, moral responsibility, beliefs regarding effectiveness and risk perception of susceptibility of side effects, with a sensitivity of 100% and a specificity of 40%, for which this combination could be improved by the ROC analysis to 82% and 67%, respectively. The sensitivity analysis yielded an order of predictors that generally corresponded with the initial model. Intention, attitude, beliefs on safety and effectiveness, risk perception of side effects and moral responsibility were most predictive for maternal Tdap vaccine acceptance during the second trimester of pregnancy, in accordance with studies regarding third trimester vaccination. These should be discussed by healthcare professionals early in pregnancy to provide an informed choice towards vaccine acceptance. [ABSTRACT FROM AUTHOR]
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- 2023
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29. Questioning 'Informed Choice' in Medical Screening: The Role of Neoliberal Rhetoric, Culture, and Social Context.
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Gram, Emma Grundtvig, Jønsson, Alexandra Brandt Ryborg, Brodersen, John Brandt, and Damhus, Christina Sadolin
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CULTURE ,PRACTICAL politics ,MEDICAL screening ,NATIONAL health services ,INFORMED consent (Medical law) ,SOCIAL context ,DECISION making ,INFORMATION science ,SOCIAL skills ,CULTURAL values - Abstract
Participation in medical screening programs is presented as a voluntary decision that should be based on an informed choice. An informed choice is often emphasized to rely on three assumptions: (1) the decision-maker has available information about the benefits and harms, (2) the decision-maker can understand and interpret this information, and (3) the decision-maker can relate this information to personal values and preferences. In this article, we empirically challenge the concept of informed choice in the context of medical screening. We use document analysis to analyze and build upon findings and interpretations from previously published articles on participation in screening. We find that citizens do not receive neutral or balanced information about benefits and harms, yet are exposed to manipulative framing effects. The citizens have high expectations about the benefits of screening, and therefore experience cognitive strains when informed about the harm. We demonstrate that decisions about screening participation are informed by neoliberal arguments of personal responsibility and cultural healthism, and thus cannot be regarded as decisions based on individual values and preferences independently of context. We argue that the concept of informed choice serves as a power technology for people to govern themselves and can be considered an implicit verification of biopower. [ABSTRACT FROM AUTHOR]
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- 2023
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30. PROPUNERE DE LEGE FERENDA PRIVIND REGLEMENTAREA INFORMĂRII CONSUMATORILOR ASUPRA PRESTATORILOR DE SERVICII FUNERARE.
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ȘCHIOPU, SILVIU-DORIN
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CONSUMER education ,CITY councils ,CUSTOMER services ,FUNERAL services ,CREMATORIUMS ,HEALTH websites ,LEGAL reasoning - Abstract
On the one hand, Public Health Directorates must display on their website the list of authorized funeral service providers. On the other hand, the local city councils have to do the same with the list of approved ones. However, the funeral service providers can carry out the specific activities only after obtaining both the sanitary authorizat ion and the approval of the local city council. Also, one of the objectives pursued by the Services Directive (Directive 2006/123/EC) is for recipients of services to have easy access to certain types of information, e.g. through a website, to increase transparency and information for consumers. This article argues that the information offered to consumers on funeral services providers is not clear, nor unambiguous, as there are two separate lists of which only one contains the providers who are legally allowed to carry out the specific activities. The main conclusion is that, for reasons of legal certainty, the legislator should intervene so that only one list is displayed and, for each provider, specify which services they can perform. The latter requirement comes from the fact that Law No 102/2014 on cemeteries, human crematoriums and funeral services provides that some funeral services can be done separately. [ABSTRACT FROM AUTHOR]
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- 2023
31. Understanding the association between informed choice and long‐term reversible contraception among Ugandan women: Findings from the 2016 Demographic Health Survey.
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Dau, Hallie, Kakaire, Othman, Karim, Mohammad Ehsanul, Nakisige, Carolyn, Vidler, Marianne, Payne, Beth A., and Ogilvie, Gina
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- *
DEMOGRAPHIC surveys , *CONTRACEPTION , *HEALTH surveys , *LONG-acting reversible contraceptives , *PROPENSITY score matching - Abstract
Objectives: To understand the relationship between informed choice and long‐acting reversible contraceptive (LARC) use among women aged 15–49 years in Uganda after adjusting for potential confounding. Methods: This cross‐sectional study uses data from the 2016 Uganda Standard Demographic and Health Survey. Thomas‐Rao corrections to a χ2 test were used for the bivariable analysis. A design‐adjusted multivariable logistic regression was used to estimate the association between informed choice and LARC use. Propensity score matching was conducted as a sensitivity analysis. Results: In all, 3646 women were included in the analysis and 975 reported using a LARC. In the design‐adjusted multivariable analysis, the odds of reporting LARC usage were 1.98 (95% confidence interval 1.61–2.43) times higher among women who reported informed choice compared with those who did not. The subsequent propensity score analysis reported similar findings. Conclusion: Providing informed choice can help to increase the number of women who use LARC in Uganda. As such, the Ugandan Ministry of Health should further expand access to family planning counseling as it could contribute to the reduction of unplanned pregnancies across Uganda with the use of LARC. Synopsis: Ugandan women who reported informed choice were approximately twice as likely to report using a LARC compared with those who used another modern contraceptive method. [ABSTRACT FROM AUTHOR]
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- 2023
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32. "We're in the same book, but we're in different parts of the book": Dominant and sub-group narratives of life following a Down syndrome determination.
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Sangster, Sarah L., DeLucry, Kailey J., and Lawson, Karen L.
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DOWN syndrome , *PARENTING , *CHILD psychiatry - Abstract
Parents of children with Down syndrome (DS) were interviewed about if their experiences raising their children matched their initial assumptions about parenting a child with DS. A dominant narrative was identified, wherein most parents described initially having negative assumptions, which did not come to fruition; parenting their child was not very different from parenting a typical child. There was also a sub-group of participants who disputed the dominant narrative; parenting their child was challenging and the dominant narrative marginalizes that experience. The findings indicate that although for many parents, having a child with DS is like " taking the scenic route " (i.e., it involves a few more hurdles, but often more rewards), this framing is not always applicable. Therefore, health care providers and support organizations should promote a narrative that encompasses the diversity of parenting a child with DS. [ABSTRACT FROM AUTHOR]
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- 2023
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33. Wolff-Parkinson-White Syndrome in Pregnancy, Labour, and Birth: A Case Study.
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Redfearn, Sarah, Harrigan, Brittany, and Redfearn, Emma
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WOLFF-Parkinson-White syndrome ,HEALTH outcome assessment ,PATIENT compliance ,PREGNANCY - Abstract
Copyright of Canadian Journal of Midwifery Research & Practice is the property of Canadian Association of Midwives and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)
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- 2023
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34. Acceptability of a standalone written leaflet for the National Health Service for England Targeted Lung Health Check Programme: A concurrent, think‐aloud study
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Mbasan Jallow, Georgia Black, Sandra vanOs, David R. Baldwin, Kate E. Brain, Michael Donnelly, Samuel M. Janes, Clara Kurtidu, Grace McCutchan, Kathryn A. Robb, Mamta Ruparel, and Samantha L. Quaife
- Subjects
decision aid ,decision‐making ,informed choice ,lung cancer screening ,Medicine (General) ,R5-920 ,Public aspects of medicine ,RA1-1270 - Abstract
Abstract Background Many countries are introducing low‐dose computed tomography screening programmes for people at high risk of lung cancer. Effective communication strategies that convey risks and benefits, including unfamiliar concepts and outcome probabilities based on population risk, are critical to achieving informed choice and mitigating inequalities in uptake. Methods This study investigated the acceptability of an aspect of NHS England's communication strategy in the form of a leaflet that was used to invite and inform eligible adults about the Targeted Lung Health Check (TLHC) programme. Acceptability was assessed in terms of how individuals engaged with, comprehended and responded to the leaflet. Semi‐structured, ‘think aloud’ interviews were conducted remotely with 40 UK screening‐naïve current and former smokers (aged 55–73). The verbatim transcripts were analysed thematically using a coding framework based on the Dual Process Theory of cognition. Results The leaflet helped participants understand the principles and procedures of screening and fostered cautiously favourable intentions. Three themes captured the main results of the data analysis: (1) Response—participants experienced anxiety about screening results and further investigations, but the involvement of specialist healthcare professionals was reassuring; (2) Engagement—participants were rapidly drawn to information about lung cancer prevalence, and benefits of screening, but deliberated slowly about early diagnosis, risks of screening and less familiar symptoms of lung cancer; (3) Comprehension—participants understood the main principles of the TLHC programme, but some were confused by its rationale and eligibility criteria. Radiation risks, abnormal screening results and numerical probabilities of screening outcomes were hard to understand. Conclusion The TLHC information leaflet appeared to be acceptable to the target population. There is scope to improve aspects of comprehension and engagement in ways that would support informed choice as a distributed process in lung cancer screening. Patient or Public Contribution The insight and perspectives of patient representatives directly informed and improved the design and conduct of this study.
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- 2022
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35. Knowledge and decisions about maternal immunisation by pregnant women in Aotearoa New Zealand
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Amber Young, Nadia A. Charania, Natalie Gauld, Pauline Norris, Nikki Turner, and Esther Willing
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Maternal immunisation ,Maternal vaccination ,Māori health ,Pacific health ,Health inequity ,Informed choice ,Public aspects of medicine ,RA1-1270 - Abstract
Abstract Background Maternal vaccinations for influenza and pertussis are recommended in New Zealand to protect mothers and their infant from infection. However, maternal immunisation coverage in New Zealand is suboptimal. Furthermore, there is unacceptable inequitable maternal immunisation rates across the country with Māori and Pacific women having significantly lower maternal immunisation rates than those of other New Zealanders. Methods This research set out to explore what pregnant/recently pregnant Māori and Pacific women knew about immunisation during pregnancy and what factors influenced their decision to be vaccinated. A semi-structured interview guide was developed with questions focusing on knowledge of pertussis and influenza vaccination during pregnancy and decision-making. Māori and Pacific women aged over 16 years were purposively sampled and interviewed in Dunedin and Gisborne, New Zealand between May and August 2021. Interviews were analysed following a directed qualitative content approach. Data were arranged into coding nodes based on the study aims (deductive analysis) informed by previous literature and within these participant experiences were inductively coded into themes and subthemes. Results Not all women were aware of maternal vaccine recommendations or they diseases they protected against. Many underestimated how dangerous influenza and pertussis could be and some were more concerned about potential harms of the vaccine. Furthermore, understanding potential harms of infection and protection provided by vaccination did not necessarily mean women would choose to be vaccinated. Those who decided to vaccinate felt well-informed, had vaccination recommended by their healthcare provider, and did so to protect their and their infant’s health. Those who decided against vaccination were concerned about safety of the vaccines, lacked the information they needed, were not offered the vaccine, or did not consider vaccination a priority. Conclusions There is a lack of understanding about vaccine benefits and risks of vaccine-preventable diseases which can result in the reinforcement of negative influences such as the fear of side effects. Furthermore, if vaccine benefits are not understood, inaccessibility of vaccines and the precedence of other life priorities may prevent uptake. Being well-informed and supported to make positive decisions to vaccinate in pregnancy is likely to improve vaccine coverage in Māori and Pacific Island New Zealanders.
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- 2022
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36. Patient informed choice in the age of evidence‐based medicine: IVF patients' approaches to biomedical evidence and fertility treatment add‐ons.
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Perrotta, Manuela and Hamper, Josie
- Subjects
- *
MENTAL health , *INFERTILITY , *PATIENT decision making , *NEGOTIATION , *EVIDENCE-based medicine , *INTERVIEWING , *PATIENTS' attitudes , *HEALTH literacy , *EXPERIENCE , *RESEARCH funding , *FERTILIZATION in vitro - Abstract
With the increasing offer of fertility treatment by a largely privatised sector, which has involved the proliferation of treatment add‐ons lacking evidence of effectiveness, In‐Vitro Fertilisation (IVF) patients are expected to make informed choices on what to include in their treatment. Drawing on interviews with 51 individuals undergoing fertility treatment, this article explores patients' approaches to medical evidence interpretation and its role in their decisions to include add‐ons. While most IVF patients share understandings of what counts as medical evidence, our findings show how their approaches also differ. Our analysis focuses on how patients negotiate the notion of medical evidence and its relation to other forms of experience or knowledge. We present four different approaches to evidence in IVF: (1) delegating evaluations of evidence to experts; (2) critically assessing available evidence; (3) acknowledging the process of making evidence; and (4) contextualising evidence in their lived experience of infertility. We suggest that patients' choice to include add‐ons is not due to a lack of information on or understanding of evidence, but rather should be interpreted as part of the complexity of patients' experiences of infertility. [ABSTRACT FROM AUTHOR]
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- 2023
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37. Harvey and Gurvir’s Law: Ontario Bill for Quality Prenatal Information about Down Syndrome: Terminology, Feasibility, and Ethical Issues.
- Author
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Lemoine, Marie-Eve, Laberge, Anne-Marie, Malo, Marie-Françoise, Cloutier, Stéphanie, Roy, Marie-Christine, Birko, Stanislav, Daigle, Andréa, and Ravitsky, Vardit
- Abstract
Harvey and Gurvir’s Law is a bill proposed to the Legislative Assembly of Ontario (Canada) to reduce stigma and bias associated with Down syndrome, by developing and disseminating quality information about Down syndrome in the context of prenatal testing. [ABSTRACT FROM AUTHOR]
- Published
- 2023
- Full Text
- View/download PDF
38. Investigating informed choice in screening programmes: a mixed methods analysis.
- Author
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Tyldesley-Marshall, Natalie, Grove, Amy, Ghosh, Iman, Kudrna, Laura, Ayorinde, Abimbola, Singh, Megha, Mehaan, Edward, Clarke, Aileen, Taylor-Phillips, Sian, and Al-Khudairy, Lena
- Subjects
- *
MEDICAL screening , *FETAL abnormalities , *BREAST cancer , *MEDICAL communication , *PREGNANCY tests - Abstract
Background: Screening programmes aim to identify individuals at higher risk of developing a disease or condition. While globally, there is agreement that people who attend screening should be fully informed, there is no consensus about how this should be achieved. We conducted a mixed methods study across eight different countries to understand how countries address informed choice across two screening programmes: breast cancer and fetal trisomy anomaly screening. Methods: Fourteen senior level employees from organisations who produce and deliver decision aids to assist informed choice were interviewed, and their decision aids (n = 15) were evaluated using documentary analysis. Results: We discovered that attempts to achieve informed choice via decision aids generate two key tensions (i) between improving informed choice and increasing uptake and (ii) between improving informed choice and comprehensibility of the information presented. Comprehensibility is fundamentally at tension with an aim of being fully informed. These tensions emerged in both the interviews and documentary analysis. Conclusion: We conclude that organisations need to decide whether their overarching aim is ensuring high levels of uptake or maximising informed choice to participate in screening programmes. Consideration must then be given to all levels of development and distribution of information produced to reflect each organisation's aim. The comprehensibility of the DA must also be considered, as this may be reduced when informed choice is prioritised. [ABSTRACT FROM AUTHOR]
- Published
- 2022
- Full Text
- View/download PDF
39. Factors affecting intention to screen after being informed of benefits and harms of breast cancer screening: a study in 5 European countries in 2021
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David Ritchie, Guido Van Hal, and Stephan Van den Broucke
- Subjects
Health literacy ,Informed choice ,Breast cancer ,Mass screening ,Public aspects of medicine ,RA1-1270 - Abstract
Abstract Background Participation in mammography screening comes with harms alongside benefits. Information about screening provided to women should convey this information yet concerns persist about its effect on participation. This study addressed factors that may influence the intention to screen once a woman has been informed about benefits and harms of participation. Methods A cross-sectional survey of women from five countries (Belgium, France, Italy, Spain, and the United Kingdom) was performed in January 2021. The survey contained a statement regarding the benefits and harms of mammography screening along with items to measure cognitive variables from the theory of planned behaviour and health belief model and the 6-item version of the European Health Literacy Survey Questionnaire (HLS-EU-Q6). Logistic regression and mediation analysis were performed to investigate the effect of cognitive and sociodemographic variables. Results A total of 1180 participants responded to the survey. 19.5% of participants (n = 230) were able to correctly identify that mammography screening carries both benefits and harms. 56.9% of participants (n = 672) responded that they would be more likely to participate in screening in the future after being informed about the benefits and harms of mammography screening. Perceived behavioural control and social norms demonstrated were significant in predicting intention, whereas, the effect of health literacy was limited. Conclusions Informing women about the presence of benefits and harms of in mammography screening participation did not negatively impact upon intention to be screened. Information should also address perception on implementation factors alongside messages on benefits and harms. Overall, screening programme managers should not be discouraged by the assumption of decreased participation through increasing efforts to address the lack of knowledge on benefits and harms.
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- 2022
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40. Die Kommunikation von Risiken in der Onkologie
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Wegwarth, Odette
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- 2023
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41. Expanding contraceptive choice among first-time mothers age 15–24 in Kinshasa: The Momentum pilot project
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Anastasia J. Gage, Francine Eva Wood, and Rianne Gay
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informed choice ,contraceptive use ,first-time mothers ,long-acting reversible contraception ,youth ,Democratic Republic of the Congo (DRC) ,Gynecology and obstetrics ,RG1-991 ,Women. Feminism ,HQ1101-2030.7 - Abstract
IntroductionEvidence shows that an expanded range of contraceptive methods, client-centered comprehensive counseling, and voluntary informed choice are key components of successful family planning programs. This study assessed the effect of the Momentum project on contraceptive choice among first-time mothers (FTMs) age 15–24 who were six-months pregnant at baseline in Kinshasa, Democratic Republic of the Congo, and socioeconomic determinants of the use of long-acting reversible contraception (LARC).MethodsThe study employed a quasi-experimental design, with three intervention health zones and three comparison health zones. Trained nursing students followed FTMs for 16 months and conducted monthly group education sessions and home visits consisting of counseling and provision of a range of contraceptive methods and referrals. Data were collected in 2018 and 2020 through interviewer-administered questionnaires. The effect of the project on contraceptive choice was estimated using intention-to-treat and dose-response analyses, with inverse probability weighting among 761 modern contraceptive users. Logistic regression analysis was used to examine predictors of LARC use.ResultsProject effect was detected on receipt of family planning counseling, obtaining the current contraceptive method from a community-based health worker, informed choice, and current use of implants vs. other modern methods. There were significant dose-response associations of the level of exposure to Momentum interventions and the number of home visits with four of five outcomes. Positive predictors of LARC use included exposure to Momentum interventions, receipt of prenatal counseling on both birth spacing and family planning (age 15–19), and knowledge of LARCs (age 20–24). The FTM's perceived ability to ask her husband/male partner to use a condom was a negative predictor of LARC use.DiscussionGiven limited resources, expanding community-based contraceptive counseling and distribution through trained nursing students may expand family planning access and informed choice among first-time mothers.
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- 2023
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42. Exploring informed choice in preconception reproductive genetic carrier screening by using a modified Multidimensional Measure of Informed Choice.
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Van Steijvoort, Eva, Peeters, Hilde, Vandecruys, Hilde, Verguts, Jasper, Peeraer, Karen, Matthijs, Gert, and Borry, Pascal
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MULTIDIMENSIONAL Health Locus of Control scales , *IMPACT of Event Scale , *EMOTIONS , *ANXIETY , *GENETIC counseling - Abstract
Objectives: To explore informed choice in reproductive genetic carrier screening (RGCS).Methods: Women visiting a gynaecologist practice in Flanders (Belgium) were asked to consider participation in a study where RGCS was offered for free to them and their male partner. A modified Multidimensional Measure of Informed Choice was used to determine whether couples who opted for RGCS made an informed choice. In addition, we assessed risk perception, feelings towards RGCS, anxiety and decisional conflict.Results: Most participants (82 %, n = 63/77) made an informed choice with regard to RGCS according to our modified MMIC. Thirteen participants made an uninformed choice due to insufficient knowledge and one participant because of insufficient knowledge and value-inconsistency. Anxiety scores were elevated for three participants. Two participants presented with decisional conflict.Conclusion: Our results show high rates of informed choice among non-pregnant couples who were offered RGCS in a research study and received up to 30 min of pre-test counseling.Practice Implications: Limited resources outside a research context may impact informed choice. Pre-test counselling initiatives for RGCS should ideally be organized in such a way that information can be provided at multiple time points to avoid information overload and to allow for a reflection period. [ABSTRACT FROM AUTHOR]- Published
- 2022
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43. Farmers' knowledge, attitudes, and perceptions for the adoption of in-field rainwater harvesting (IRWH) technique in Thaba Nchu, South Africa.
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Dzvene, Admire Rukudzo, Tesfuhuney, Weldemichael, Walker, Sue, Fourie, Andries, Botha, Cobus, and Ceronio, Gert
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FARMERS , *WATER harvesting , *FARMERS' attitudes , *FAMILY size , *ADOPTION , *CLIMATE change mitigation - Abstract
A systematic engagement strategy was used to identify contextual factors that prevent farmers from accepting the in-field rainwater harvesting (IRWH) technique. The purpose of the qualitative study is to assess farmers' knowledge and attitudes about the technique, as well as their adoption and perceptions thereof. A total of 48 knowledge, attitude, perception, and adoption questionnaires were used to gather information. The gathered data was used to determine whether farmers had made an informed choice. The results show that less than a third (27%) made an informed choice while 89.6% had a positive attitude. The overall reflection of excellent knowledge (75%) about the technique was high among farmers aged 41 and over and amounted to 55.6%. According to the survey results, farmers over the age of 45 years (75%), women (56.2%), farmers with a high school certificate (62.5%), and those who are unemployed, continue to adopt the technique (56.2%). According to the binary logistic regression model, increasing household family size had a significant negative impact on adoption (p < 0.05), whereas farmers with high school certificates and crop-livestock households had a significant positive impact (p < 0.01). Most farmers (56.3%) agreed that there was a lack of training, and that more attention is needed on issues such as lack of rainfall (63.3%) and technology taking up more land, which reduce farmers' crop population and yield (52%). Farmers' narratives about anticipated interventions, such as intercropping training and timely drought warning services, should increase their adoption. This study focuses on farmers' specific technology adoption needs, offering another perspective on how achieving the sustainable development goals (SDGs) of zero hunger and climate action necessitates a decentralized approach. [ABSTRACT FROM AUTHOR]
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- 2022
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44. Choice in the Platform Economy: Insights from Competing Economic Explanations.
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Wittig, Stephan
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CONSUMER preferences ,INSTITUTIONAL economics ,DIGITAL technology ,CONSUMERS ,EXPLANATION - Abstract
It is widely believed that digital platforms enrich consumer choice by providing more options and information about choices. This classical understanding of informed choice is underpinned by assumptions of perfect rationality and complete information. This contribution scrutinises platforms’ effect on consumer choice and employs competing economic explanations to answer the question, “Can consumers make informed choices about their interactions with digital platforms?” First, theories from New Institutional Economics explain how platforms become unavoidable intermediaries on the micro and macro-level. Then, a Critical Political Economy lens is used to discuss why and how platform owners control consumer choice. Both approaches reveal suggestions for further research and support a call to tear down the mental barriers separating consumer and citizen mindsets. [ABSTRACT FROM AUTHOR]
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- 2022
45. Pregnant women's informational needs prior to decisions about prenatal diagnosis for chromosomal anomalies : A Q methodological study
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Ternby, Ellen, Axelsson, Ove, Georgsson, Susanne, Ingvoldstad Malmgren, Charlotta, Ternby, Ellen, Axelsson, Ove, Georgsson, Susanne, and Ingvoldstad Malmgren, Charlotta
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Objective To study pregnant women's subjective viewpoints on what is important when receiving information prior to decision-making regarding prenatal testing for chromosomal anomalies. Method Data were collected using Q methodology. During January 2020—October 2021, 45 pregnant women in Sweden completed a 50-item Q sort. Statements regarding what is important when receiving information about prenatal screening and diagnosis were prioritized through ranking in a fixed sorting grid on an 11-point scale, from “most important” to “least important.” Socio-demographics and coping styles were surveyed through questionnaires. Results Three groups represented different viewpoints on what pregnant women consider important when receiving information about prenatal screening and diagnosis. Factor 1: Stepwise information and decision-making: viewing information and decision-making as a step-by-step process. Factor 2: Decision-making as a continuous process based on couple autonomy: Striving for an informed decision as a couple about tests, test results and conditions screened. Factor 3: As much information as early as possible—the importance of personal autonomy in decision-making: Prioritizing autonomous decision-making based on non-directive information early in the pregnancy. Conclusion This study highlights the complexities involved when providing information. As shown by the differing viewpoints in this study, pregnant women's informational needs differ, making individual and personalized information preferable.
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- 2024
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46. Factors influencing pregnant women's decision to accept or decline prenatal screening and diagnosis - a qualitative study.
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Ternby E, Axelsson O, Ingvoldstad Malmgren C, and Georgsson S
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Background and Objective: Prenatal diagnosis for chromosomal anomalies is frequently used worldwide. It is important that pregnant women receive adequate counselling to make informed decisions regarding prenatal diagnosis. The aim of this study was to explore what factors influence pregnant women's decision-making process when accepting or declining prenatal screening and diagnosis. Methods: A qualitative study using inductive qualitative content analysis. Individual, semi-structured phone interviews were carried out during a five-month period in 2016-2017 with 24 pregnant women in the first trimester, living in a medium-sized Swedish city., Findings: Two main themes emerged: (1)"Individual factors - The women's experiences, perceptions and values" with three categories "Attitude towards anomalies", "Worry and need for reassurance", "Self-perceived risk" and (2)"External factors - The women's perception of the test and others' views" with two categories "Test characteristics" and "Influence from others". Conclusions: Pregnant women's decision-making process regarding prenatal tests is multidimensional, affected by both individual factors such as experiences, perceptions and values, and external factors such as test characteristics and influence from others. Information about both test characteristics and the conditions tested is of help pregnant women in the decision-making process since it provides a better understanding of how having a child with the condition in question can affect them and their family. It is important that healthcare professionals giving information about and offering prenatal tests for chromosomal anomalies are aware of how their attitudes can influence women's decisions., (© 2024. The Author(s).)
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- 2024
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47. [Information and support needs of women planning an abortion according to counselling regulations in Germany - A qualitative study].
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Jeltsch C and Berger-Höger B
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Background: For women seeking legal abortion care, access to information and care options is not transparent in Germany. This can affect health and complicate the decision-making process. In its guideline, the WHO recommends the use of evidence-based information to enable women to make informed decisions. This qualitative study aims to assess preferences and decisional needs of women in Germany., Method: For the needs assessment, a qualitative study based on semi-structured guided interviews was conducted with pregnancy conflict counsellors and women who terminated a pregnancy in the past five years in Germany. These data were supplemented with social media group postings of women with pregnancy conflict experiences. All data were analysed using content-structuring analysis according to Kuckartz., Results: Three women who had undergone an abortion and two pregnancy conflict counsellors were interviewed. In addition, 89 posts from a closed social media group were analysed. Three main categories were identified: women's categorisation in value systems, factors influencing the experience of the care process and information needs of women facing conflict situations in connection with their pregnancy ("pregnancy conflict"). Abortion is considered to be stigmatised, so women rarely use existing counselling services. Overall, there is a high need for information and support among those seeking care. Concerns exist, especially with regard to the methods of abortion. The results of the study also indicate a burden caused by fragmented care, which requires a high degree of self-organisation of women., Discussion: The care situation in Germany does not meet the recommendations of the WHO guideline on safe abortion. The results indicate that care close to home and with an abortion procedure that meets women's individual preferences and thus complies with their self-determination has not yet been achieved in Germany., Conclusion: Neutral and evidence-based information could be helpful to enable women to make informed decisions and reduce anxiety. It would also be desirable to increase the opportunities for women to talk about their experiences in a protected environment., (Copyright © 2024. Published by Elsevier GmbH.)
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- 2024
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48. Informed choice and routinization of the second-trimester anomaly scan: a national cohort study in the Netherlands
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Lust, Eline E.R., Bronsgeest, Kim, Henneman, Lidewij, Crombag, Neeltje, Bilardo, Caterina M., van Vliet-Lachotzki, Elsbeth H., Galjaard, Robert-Jan H., Sikkel, Esther, Haak, Monique C., and Bekker, Mireille N.
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- 2023
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49. Informed choice and its associated factors among women received immediate postpartum long-acting reversible contraceptives at public hospitals in Sidama Regional State, Ethiopia, 2022
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Samuel, Beniyam, Tsegaye, Berhan, Dulla, Dubale, Aynalem, Amdehiwot, Israel, Eskinder, and Gebrie, Meless
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- 2023
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50. Authorization of anastrazole to prevent breast cancer in postmenopausal women: a bad idea.
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Glynne, S. J. and Bluming, A. Z.
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BREAST cancer , *CANCER prevention , *DISEASE risk factors - Abstract
Anastrazole has recently been approved for the prevention of breast cancer in high-risk women in the UK. When given to high-risk women anastrazole halves the risk of developing breast cancer but doesn't reduce the risk of breast cancer death and is associated with significant harms. Women need to be counselled about both the benefits and risks associated with anastrazole use to enable an informed treatment choice. [ABSTRACT FROM AUTHOR]
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- 2024
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