How do Hispanics/Latinos Perceive and Value the Return of Research Results?

2022 ◽  
pp. 154041532110708
Author(s):  
Juan R. Canedo ◽  
Victoria Villalta-Gil ◽  
Carlos G. Grijalva ◽  
David Schlundt ◽  
Rebecca N. Jerome ◽  
...  
Keyword(s):  
Perceived Value ◽  
Specific Information ◽  
Cross Sectional ◽  
Research Results ◽  
Risk Of Disease ◽  
Return Of Research Results ◽  
Higher Educational Attainment ◽  
Types Of Information ◽  
Research Initiatives ◽  
Study Participants

Introduction: Interest in the return of research results has been increasing; however, little is known about how Hispanics/Latinos perceive and value receiving results. This study examined differences among Hispanics/Latinos by education and income in the experience and expectations about the return of research results, perceived value of specific types of information, and the least and most valuable specific information. Method: Retrospective observational design using a cross-sectional national survey sample of Hispanics/Latinos (n = 327). Results: Higher educational attainment was positively associated with the expectation to receive research results, likelihood to participate in research if given study findings, and likelihood to trust researchers if given results. Higher income was positively associated with the perceived value of getting results. Respondents with higher education specifically perceived greater value in information about how lifestyle and genetics affect their risk of disease, how genetics affect how they respond to medications, their ancestry, available clinical trials near them, and how to connect with other study participants. Respondents with higher income perceived greater value in information about how genetics affect their risk of disease and how they respond to medications. Conclusion: The findings offer important insights for planning research initiatives and for developing culturally targeted educational materials for Hispanics/Latinos.

Return of Research Results to Study Participants

JAMA ◽  
2018 ◽  
Vol 320 (5) ◽  
pp. 435 ◽  
Author(s):  
Charlene A. Wong ◽  
Adrian F. Hernandez ◽  
Robert M. Califf
Keyword(s):  
Research Results ◽  
Return Of Research Results ◽  
Study Participants

scholarly journals General and Health-Related Internet Use Among Cancer Survivors in the United States: A 2013–2018 Cross-Sectional Analysis

2020 ◽  
Vol 18 (11) ◽  
pp. 1468-1475 ◽  
Author(s):  
Edward Christopher Dee ◽  
Vinayak Muralidhar ◽  
Santino S. Butler ◽  
Zizi Yu ◽  
Sybil T. Sha ◽  
...  
Keyword(s):  
Cancer Survivors ◽  
Health Information ◽  
Information Needs ◽  
Internet Use ◽  
Significant Proportion ◽  
The United States ◽  
The Internet ◽  
Specific Information ◽  
Cross Sectional ◽  
Higher Educational Attainment

Background: A significant proportion of cancer survivors endorse ongoing health information needs and may use the internet to access information. We assessed patterns and predictors of general and health-specific internet use among cancer survivors. Methods: Using data from the National Health Interview Survey (NHIS), which was administered in 2013 through 2018, for adults reporting a cancer diagnosis, sample weight-adjusted estimates defined prevalence and multivariable logistic regressions defined adjusted odds ratios (aORs) of general and health-specific internet use, adjusting for relevant sociodemographic covariates, including healthcare satisfaction as the primary independent variable. The analysis for health-specific internet use was also repeated including a sex (female vs male)*healthcare satisfaction (very satisfied/somewhat satisfied vs somewhat dissatisfied/very dissatisfied) interaction term. Results: Among 12,970 survivors of cancer, general and health-specific internet use increased from 2013 to 2018 (from 63.2% to 70.8% and from 46.8% to 52.2%, respectively; P<.05 for both). Survivors who were very dissatisfied with healthcare were more likely to use the internet for health information compared with those who were very satisfied (59.5% vs 48.0%; aOR, 1.78; 95% CI, 1.20–2.64; P=.004). Younger age, female sex, higher educational attainment, and higher socioeconomic status were all associated with increased reported use of the internet for both general and health-specific purposes (P<.001 for all). There was a significant sex*healthcare satisfaction interaction (P=.009) such that for female survivors, healthcare dissatisfaction was associated with higher odds of health-specific internet use (61.4% vs 52.5%; P<.001; men, P=.97). No association was found between healthcare satisfaction and general internet use (P=.42). Conclusions: The increasing proportion of survivors of cancer using the internet for health-specific information may be associated with self-reported dissatisfaction with healthcare. Efforts are needed to improve both access to the internet and the quality of cancer-relevant online health information, and to enhance patients’ online health literacy.

A Survey of Researchers[rquo] Practice in Returning Research Results To Research Participants. Oral Abstracts Presented at ASH Annual Meeting 2003.

Blood ◽  
2004 ◽  
Vol 104 (11) ◽  
pp. 3130-3130
Author(s):  
Heather B. Rigby ◽  
Conrad V. Fernandez
Keyword(s):  
Research Ethics ◽  
Annual Meeting ◽  
International Research ◽  
The United States ◽  
Research Community ◽  
Return Of Results ◽  
Research Results ◽  
Research Participants ◽  
Return Of Research Results ◽  
Study Participants

Abstract Background: Offering research results to study participants is increasingly considered an ethical obligation founded on the principle of respect for persons. This practice acknowledges the importance of the participant’s contribution in the study and, in some instances, enables the participant to benefit directly from the health information derived from the research. Recent studies have established that there is growing support for this practice among investigators and study participants in highly selected populations. The frequency and means of this practice is unknown in the broader national and international research community. Methods: We pilot-tested a questionnaire, which we designed for this study. It had a high content validity. The questionnaire was designed to document the frequency with which researchers offer return of results to research participants, the means by which researchers offer results, the role of Research Ethics Boards (REBs) in the return of research results, and the demographics of the study participants. We classified all 887 abstracts presented at the American Society of Hematology Annual Meeting in December 2003 according to study type. Only those abstracts involving human subjects were included. Of the 478 eligible abstracts, email addresses for 472 (98.7%) first or senior authors were found using public web sites. The investigators were sent the 4–5 minute survey by email. Two reminders were sent to non-respondents. Responses were downloaded to a secure server and analyzed by descriptive and Chi squared techniques. Results: Interim results were obtained 11 days after initiating the survey. Complete responses were received from 84 of the 471 (18%) investigators. Most responders were physicians (n=68; 81%) and almost half (n=40; 47%) received Research Ethics Board (REB) approval for their study in the United States. Only 23 (27%) investigators had a formal plan for the return of results to study participants. No clear preference for any one means of returning research results was indicated. The majority (n=18; 78%) indicated that they would provide the participant with a choice of whether or not to receive research results and most (n=14; 61%) indicated that they would provide an overall summary of results rather than an overall summary plus individual level results. Reasons for not returning research results included: did not consider it (n=25), contact difficulties (n=22), and participant difficulty in understanding results (n=19). Cost and concern for the patient regarding adverse effects of receiving results were infrequently cited. Only 2 (2%) of investigators reported that their REB mandated the offer of return of research results to all participants. 55 researchers (66%) supported or strongly supported the return of results to participants, 27 (32%) were neutral, and only 2 (2%) opposed or strongly opposed this practice. Updated data and further analyses will be reported at the annual meeting. Conclusion: Investigators in the international research community infrequently offer to return results to research participants, and REBs rarely mandate this practice. Our study reaffirms the findings of other studies that indicate a high level of support for this practice among researchers. Further work is needed to assess participant needs and concerns, and how to bridge the gap between the expressed attitudes of researchers and actual practice.

A View of the Lexical–Grammatical Link in Young Latinos With Specific Language Impairment Using Language-Specific and Conceptual Measures

2019 ◽  
Vol 62 (6) ◽  
pp. 1775-1786 ◽  
Author(s):  
Lucía I. Méndez ◽  
Gabriela Simon-Cereijido
Keyword(s):  
Low Income ◽  
Language Impairment ◽  
Specific Language Impairment ◽  
L2 Acquisition ◽  
Cross Sectional ◽  
Specific Language ◽  
Vocabulary Skills ◽  
In The Beginning ◽  
Study Participants ◽  
L1 And L2

Purpose This study investigated the nature of the association of lexical–grammatical abilities within and across languages in Latino dual language learners (DLLs) with specific language impairment (SLI) using language-specific and bilingual measures. Method Seventy-four Spanish/English–speaking preschoolers with SLI from preschools serving low-income households participated in the study. Participants had stronger skills in Spanish (first language [L1]) and were in the initial stages of learning English (second language [L2]). The children's lexical, semantic, and grammar abilities were assessed using normative and researcher-developed tools in English and Spanish. Hierarchical linear regressions of cross-sectional data were conducted using measures of sentence repetition tasks, language-specific vocabulary, and conceptual bilingual lexical and semantic abilities in Spanish and English. Results Results indicate that language-specific vocabulary abilities support the development of grammar in L1 and L2 in this population. L1 vocabulary also contributes to L2 grammar above and beyond the contribution of L2 vocabulary skills. However, the cross-linguistic association between vocabulary in L2 and grammar skills in the stronger or more proficient language (L1) is not observed. In addition, conceptual vocabulary significantly supported grammar in L2, whereas bilingual semantic skills supported L1 grammar. Conclusions Our findings reveal that the same language-specific vocabulary abilities drive grammar development in L1 and L2 in DLLs with SLI. In the early stages of L2 acquisition, vocabulary skills in L1 also seem to contribute to grammar skills in L2 in this population. Thus, it is critical to support vocabulary development in both L1 and L2 in DLLs with SLI, particularly in the beginning stages of L2 acquisition. Clinical and educational implications are discussed.

The invisible hole of information on SMB's cybersecurity

2019 ◽  
Vol 7 (1) ◽  
pp. 14-26
Author(s):  
Ruti Gafni ◽  
Tal Pavel
Keyword(s):  
Mass Communication ◽  
Cyber Attacks ◽  
Communication Media ◽  
Specific Information ◽  
Exploratory Research ◽  
Cyber Attack ◽  
Public Attention ◽  
Cyber Threats ◽  
Accessible Information ◽  
Types Of Information

Small and Medium Businesses (SMB) use Internet and computer-based tools in their daily processes, sometimes without being aware to the cyber threats, or without knowing how to be prepared in case of a cyber-attack, although they are a major target for cyber-attacks. Specific information about cybersecurity needed by SMBs, in order to cope with cyber threats, is not always available or easily accessible. In this study, a vast search of different types of information about SMBs’ cybersecurity was performed, in order to find whether a hole of accessible information exists in this area. This exploratory research covered general mass communication media channels, technological and professional cybersecurity websites, and academic journals, and found that indeed very few studies, articles and news items were published in this matter. Leveraging knowledge and awareness, diminishing the shame for reporting cyber-attacks, and increasing mass communication media interest and public attention, may be activities to cover this “invisible hole”.

scholarly journals Undernutrition and associated factors in orphan children aged 6–59 months in Gambella Southwest, Ethiopia: A community-based cross-sectional study

BMJ Open ◽  
2021 ◽  
Vol 11 (7) ◽  
pp. e045892
Author(s):  
Solomon Feleke ◽  
Gudina Egata ◽  
Firehiwot Mesfin ◽  
Gizachew Yilak ◽  
Abebaw Molla
Keyword(s):  
Associated Factors ◽  
Wealth Index ◽  
Cross Sectional Study ◽  
Sectional Study ◽  
Access To Health Services ◽  
Cross Sectional ◽  
Orphaned Children ◽  
Access To Health ◽  
Study Participants ◽  
Children Under 5

ObjectiveThe study aimed to assess the prevalence of stunting, wasting, underweight and associated factors in orphaned children under 5 years old.DesignA cross-sectional study.SettingGambella City, Ethiopia.ParticipantsA sample of 419 under 5 orphaned children included in the study. Eligible households with orphans had selected using a systematic random sampling method. The lottery method was used when more than one eligible study participants live in the household. An OR with 95% CI was performed to measure the strength of association between each dependent variable and independent variables. Variables with p<0.05 were declared statistically significant.Primary outcomeThe main outcome of this study was the prevalence of undernutrition among orphaned under 5 and its associated factors.ResultsPrevalence of stunting, wasting and underweight in orphan children under 5 were 12.2%, 37.8% and 21.7%, respectively. The prevalnce of wasting peaks among age group of 36–47 months (42.5%), whereas underweight peaks in 48–59 months (27.7%). Food insecurity, wealth index, family size, vitamin A supplementation, diarrhoea, fever 2 weeks before the survey, children under 5 and parents’ death were associated with undernutrition.ConclusionThe prevalence of stunting, wasting and underweight among orphan children under 5 was significantly high. Multisectoral collaborative efforts towards access to health services, improving income-generating activities, micronutrient supplementation and social support and protection targeting orphan and vulnerable populations have to be built up.

scholarly journals Association of breastfeeding and risk of metabolic syndrome and its components in postmenopausal parous women: Korea national health and nutrition examination survey (2010 ~ 2016)

2021 ◽  
Vol 79 (1) ◽  
Author(s):  
Jusuk Lee ◽  
Taehong Kim
Keyword(s):  
Metabolic Syndrome ◽  
Laboratory Data ◽  
Multivariate Logistic Regression Analysis ◽  
Density Lipoprotein ◽  
Cross Sectional Study ◽  
Korean Women ◽  
Cross Sectional ◽  
Increased Risk ◽  
Nationally Representative ◽  
Study Participants

Abstract Background Understanding the relationship between breastfeeding (BF) and metabolic syndrome (Mets) is important for maternal long-term health benefits and disease prevention. This study aimed to examine the association between BF and Mets and its components among postmenopausal parous Korean women. Methods This cross-sectional study on 10,356 Korean women used nationally representative data from the KNHANES from 2010 to 2016. Anthropometric, laboratory data and manual BP were measured. A multivariate logistic regression analysis was conducted to examine the association of BF with Mets and its components after adjusting for potential confounding variables. A p-value < 0.05 was to be considered statistically significant. Results Mets was present in 42% of the study participants. The BF group had low household income and education level. The prevalence of Mets in the BF group was higher than that in the non-BF group (42.69% vs. 34.76%, p <  0.001). BF was associated with increased risk of Mets (odds ratio [OR]: 1.4, 95% confidence interval [CI]: 1.18–1.65, p <  0.001). The BF group was at higher risks for diabetes (OR: 1.5, 95%CI: 1.14–1.98), hypertension (OR: 1.32, 95%CI: 1.03–1.68), hypertriglyceridemia (OR: 1.42, 95%CI: 1.02–1.99) and low high-density lipoprotein cholesterol (OR: 1.32, 95%CI: 1.06–1.65). Conclusion In this study, BF did not affect decreasing the prevalence of Mets and its components.

scholarly journals Automatic Placement of Genomic Research Results in Medical Records: Do Researchers Have a Duty? Should Participants Have a Choice?

2015 ◽  
Vol 43 (4) ◽  
pp. 827-842
Author(s):  
Anya E.R. Prince ◽  
John M. Conley ◽  
Arlene M. Davis ◽  
Gabriel Lázaro-Muñoz ◽  
R. Jean Cadigan
Keyword(s):  
Medical Record ◽  
Medical Records ◽  
Genomic Research ◽  
Research Results ◽  
Research Participants ◽  
Difficult Question ◽  
Automatic Placement ◽  
Study Participants ◽  
Research Studies

The growing practice of returning individual results to research participants has revealed a variety of interpretations of the multiple and sometimes conflicting duties that researchers may owe to participants. One particularly difficult question is the nature and extent of a researcher’s duty to facilitate a participant’s follow-up clinical care by placing research results in the participant’s medical record. The question is especially difficult in the context of genomic research. Some recent genomic research studies — enrolling patients as participants — boldly address the question with protocols dictating that researchers place research results directly into study participants’ existing medical records, without participant consent. Such privileging of researcher judgment over participant choice may be motivated by a desire to discharge a duty that researchers perceive themselves as owing to participants. However, the underlying ethical, professional, legal, and regulatory duties that would compel or justify this action have not been fully explored.

scholarly journals Knowledge and attitude of pregnant women towards preeclampsia and its associated factors in South Gondar Zone, Northwest Ethiopia: a multi‐center facility‐based cross‐sectional study

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Maru Mekie ◽  
Dagne Addisu ◽  
Minale Bezie ◽  
Abenezer Melkie ◽  
Dejen Getaneh ◽  
...  
Keyword(s):  
Associated Factors ◽  
First Trimester ◽  
Cross Sectional Study ◽  
Northwest Ethiopia ◽  
Sectional Study ◽  
Cross Sectional ◽  
Level Of Knowledge ◽  
Knowledge And Attitude ◽  
Study Participants ◽  
South Gondar

Abstract Background Preeclampsia has the greatest impact on maternal mortality which complicates nearly a tenth of pregnancies worldwide. It is one of the top five maternal mortality causes and responsible for 16 % of direct maternal death in Ethiopia. Little is known about the level of knowledge and attitude towards preeclampsia in Ethiopia. This study was designed to assess the knowledge and attitude towards preeclampsia and its associated factors in South Gondar, Northwest Ethiopia. Methods A multicenter facility-based cross-sectional study was implemented in four selected hospitals of South Gondar Zone among 423 pregnant women. Multistage random sampling and systematic random sampling techniques were used to select the study sites and the study participants respectively. Data were entered in EpiData version 3.1 while cleaned and analyzed by Statistical Package for Social Sciences (SPSS) version 23. Descriptive and inferential statistics were performed. Adjusted odds ratio with 95 % confidence interval were used to identify the significance of the association between the level of knowledge on preeclampsia and its predictors. Results In this study, 118 (28.8 %), 120 (29.3 %) of the study participants had good knowledge and a positive attitude towards preeclampsia respectively. The likelihood of having good knowledge on preeclampsia was found to be low among women with no education (AOR = 0.22, 95 % CI (0.06, 0.85)), one antenatal care visit (ANC) (AOR = 0.13, 95 % CI (0.03, 0.59)). Whereas, those who booked for ANC in the first trimester (AOR = 6.59, 95 % CI (1.43, 30.33)), gave the last birth at a health facility (AOR = 2.61, 955 CI (1.03, 6.61)), and experienced a complication during previous births (AOR = 3.67, 95 % CI (1.78, 7.57)) were more likely to be knowledgeable on preeclampsia. Conclusions No formal education and not attending four ANC visits were associated with poor knowledge of preeclampsia. While participants who visited health facilities during the first trimester, who gave birth at health facilities, and those who experienced a complication in previous births were more likely to be knowledgeable on preeclampsia. Improving the numbers of ANC visits and encouraging facility delivery are important measures to improve women’s knowledge on preeclampsia. Health education regarding preeclampsia risk factors, symptoms, and complications shall be emphasized.

scholarly journals Emotional Bonding and Sexual Activity During COVID-19 Lockdown: A Cross-National Pilot Study

2021 ◽  
pp. 263183182110274
Author(s):  
Deblina Roy ◽  
Sujita Kumar Kar ◽  
SM Yasir Arafat ◽  
Pawan Sharma ◽  
Russell Kabir
Keyword(s):  
Online Survey ◽  
Sampling Technique ◽  
Sexual Relationships ◽  
Sexually Active ◽  
Online Questionnaire ◽  
Cross Sectional ◽  
Emotional Bonding ◽  
Significant Difference ◽  
The Mean ◽  
Study Participants

Background: The COVID-19 pandemic and lockdown measures have affected the sexuality and emotional bonding among the couple across the world. Objectives: We aimed to assess the effects of the COVID-19 pandemic and lockdown on the married people’s emotional bonding and sexual relationships in 3 south Asian counties (Bangladesh, India, and Nepal). Methods: A cross-sectional online survey was conducted among Bangladesh, India, and Nepal residents from April 3 to April 15, 2020. The survey was designed in English. The participants were selected through convenience sampling technique, the link of the online questionnaire was shared with the participants. Only participants older than 18 years and above, married, and living with their spouses were included in the study. Results: A total number of 120 respondents were included finally for analysis from the participating countries (India, Nepal, and Bangladesh). The mean age of the participants was 35.42 (±5.73) years; the majority were males under the age of 40 years and had completed postgraduation as their qualification. Among the study participants, more than half (53.8%) of the women reported being sexually active during the lockdown, whereas 41% of the men reported being sexually active. Among the sexually active participants, most women (57.7%) reported that they perceived positive emotional bonding with their partners. Nevertheless, there was no significant difference observed when compared with men. There are variations in responses. However, no significant association was identified. Conclusion: There are a few insights from the study, that is, there was no significant difference found in almost 3 countries in emotional intimacy. There had been a trend that there is improved emotional bonding with their partners, although no significant difference was observed.

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