AJOB primary research最新文献

{"title":"Perceptions of Clinical Ethics Practices: IntegratedEthicsTM Staff Survey Data from the VA Health Care System","authors":"R. Pearlman, Jennifer Cohen, M. Bottrell, M. Foglia, E. Fox","doi":"10.1080/21507716.2012.752418","DOIUrl":"https://doi.org/10.1080/21507716.2012.752418","url":null,"abstract":"Background: Clinical ethics is fundamental to the quality of health care and is a concern facing all health care systems. This study examined clinicians’ perceptions of ethical practices in shared decision making with patients, end-of-life care, professionalism in patient care, and patient privacy and confidentiality in order to identify strengths in ethical practices and opportunities for improvement. Methods: We analyzed data from the 48,857 clinician respondents to the 2010 IntegratedEthics™ Staff Survey (IESS). The IESS was developed to provide a broad snapshot of a health care organization's ethical practices for quality improvement purposes. We used descriptive statistics to evaluate clinicians’ perceptions of clinical ethics practices and multivariate logistic regression analyses to evaluate associations between clinician- and organization-level characteristics and positive ethical practices. Results: Survey results suggest opportunities for improvement in ethical practices, including giving patients sufficient time to discuss treatment recommendations, giving better guidance to clinicians on how to maintain professional boundaries, disclosing medical errors to patients and surrogates, and providing clinicians with better education about ethical issues in end-of-life care. The majority of respondents were familiar with the ethics consultation service (ECS). Familiarity with the ECS was significantly associated with length of time working at VA, physician status, and manager/supervisory level of responsibility. If confronted with an ethical concern, approximately three-quarters of respondents reported that they would be very or moderately likely to use the ECS. Conclusions: The results from this study support quality improvement activities by allowing health care organizations to compare clinical ethics practices across staff groups, settings, and time. After a facility obtains its results, the next steps should include seeking greater understanding through qualitative interviews, and then selecting topics for quality improvement initiatives. These activities will reinforce the importance of ethics as a component of health care quality and promote a positive ethics environment.","PeriodicalId":89316,"journal":{"name":"AJOB primary research","volume":"27 1","pages":"20 - 33"},"PeriodicalIF":0.0,"publicationDate":"2013-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"84855686","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Indigenous Populations: Decision Making and Informed Consent to Research","authors":"P. Marshall","doi":"10.1080/21507716.2012.740969","DOIUrl":"https://doi.org/10.1080/21507716.2012.740969","url":null,"abstract":"Taken together, Tupara’s (2012) article on decision making for health research in Aotearoa, New Zealand, and Sherman and colleagues’ (2012) case study from the Peruvian Amazon examining indigenous principles and ethical guidelines for informed consent, speak truth to the difficulties faced by investigators conducting research involving indigenous populations. Their detailed analyses of the ongoing and myriad challenges associated with informed consent to research with indigenous groups call attention to three interrelated issues: first, the history of colonization of indigenous people and its implications for health research in their communities; second, the application of western ideologies about informed consent in communities with different beliefs about the process of decision making; and third, the pragmatic constraints that researchers face in developing strategies to identify culturally appropriate models for implementing the process of informed consent. Application of the process of informed consent to research with indigenous people has received increased attention in the last decade. Challenges associated with informed consent such as lengthy forms and the use of scientific language that can be confusing are not unique to research involving indigenous populations. However, the legacy and negative effects of western colonization and its implications for implementing informed consent to health research with indigenous people is profound. Trust is an essential ingredient of the informed consent process in any cultural setting. Long histories of domination, subjugation, and discrimination by colonial powers diminish the potential for establishing trust with individuals or institutions representing “foreign” interests. In their arguments for the need to tailor informed consent to research, Rotimi and Marshall (2010) highlight issues associated with conducting research involving indigenous populations. Although Rotimi and Marshall’s (2010) paper focuses on international genetic and genomic research, the concerns they raise are applicable to health research generally. Both academic and industry investigators have been","PeriodicalId":89316,"journal":{"name":"AJOB primary research","volume":"50 1","pages":"69 - 71"},"PeriodicalIF":0.0,"publicationDate":"2012-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"76522236","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"A Preliminary Study of Employees’ Views of Genetic Research: Perceived Harm, Risk, and Willingness to Participate","authors":"L. Roberts, T. Warner, Jessica A. Erickson","doi":"10.1080/21507716.2012.717338","DOIUrl":"https://doi.org/10.1080/21507716.2012.717338","url":null,"abstract":"Background: Genetic innovation may bring benefits to workplaces, including the development of new genetic tests to help employers better protect workers’ health. Collecting employees’ genetic information may nevertheless have adverse consequences, including the potential for unintended secondary results or misuse of results. Thus, employees’ views regarding benefits and risks of participating in genetic testing for research purposes is important. Although the 2008 Genetic Information Nondiscrimination Act (GINA) has reduced risks for negative repercussions of participating in genetic research, it has not eliminated risks completely; thus, exploring attitudes regarding these issues continues to be relevant. Methods: Sixty-three healthy working adults in a health sciences center and federal scientific research laboratory participated in a written survey and structured interview. This article analyzes aspects of workers’ views toward participation in genetic research and their likelihood of participation in various research-related procedures and studies that have potentially negative employment consequences. Results: Participants reported that they were likely to volunteer for each of six research procedures, but the two procedures that involved genetic testing were ranked lowest in terms of their willingness to participate. Respondents perceived the potential harm of all six procedures as lower than “usual” risks encountered in daily life. Employees did not express willingness to participate in health research they believed would lead to various negative consequences for their work status. Conclusions: Respondents were receptive to volunteering for research involving genetic testing. Respondents endorsed concerns related to socioeconomic and employment consequences. Future research on these issues should include replication with a larger, more diverse sample; examination of workers’ knowledge of genetics; and a wider range of concerns associated with genetic research participation.","PeriodicalId":89316,"journal":{"name":"AJOB primary research","volume":"1 1","pages":"72 - 80"},"PeriodicalIF":0.0,"publicationDate":"2012-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"89250478","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Ethics and Health Research: Decision Making in Aotearoa New Zealand","authors":"Hope Tupara","doi":"10.1080/21507716.2012.714834","DOIUrl":"https://doi.org/10.1080/21507716.2012.714834","url":null,"abstract":"Background: There has been no prior research in Aotearoa New Zealand describing how indigenous Maori engage with researchers in decision processes as participants of health research, even though Maori are often participants in health research. Methods: This article describes the findings of a retrospective qualitative case study of the decision experiences of members of three Maori kin groups (whanau) who have been participants in genetic research. Results: The study found four Maori constructs embedded in the participants’ decision processes. Hui, 1 rangatiratanga, 2 manaakitanga, 3 and kotahitanga 4 are multifaceted concepts that featured prominently in decision making for all whanau interviewed. Conclusions: The results confirm philosophical, theoretical, and anecdotal discussions indicating that Maori utilize unique conventions in decision making, which is relevant to health researchers because of the important link between decision making and informed consent. A hui (pronounced as “who + we”) is a gathering or forum imbued with tikanga or cultural etiquette. 2. Rangatiratanga (pronounced “rar + nga + tea + rar + tar + nga”) has a range of meanings, including autonomy, chiefliness and/or leadership, and positive role modeling. 3. Manaakitanga (pronounced “mar + nar + key + tar + nga”) refers to notions such as guardianship, care, nurturing, and protection. 4. Kotahitanga (pronounced “core + tar + he + tar + nga”) broadly refers to unity and collectivity but also to conventions that protect the integrity of the collective, such as the well-being of the membership.","PeriodicalId":89316,"journal":{"name":"AJOB primary research","volume":"1 1","pages":"40 - 52"},"PeriodicalIF":0.0,"publicationDate":"2012-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"89137386","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"A Comparison of Attitudes Toward Cognitive Enhancement and Legalized Doping in Sport in a Community Sample of Australian Adults","authors":"Brad Partridge, J. Lucke, W. Hall","doi":"10.1080/21507716.2012.720639","DOIUrl":"https://doi.org/10.1080/21507716.2012.720639","url":null,"abstract":"Background: This article compares public attitudes toward the use of prescription drugs for cognitive enhancement with the use of performance enhancing drugs in sport. We explore attitudes toward the acceptability of both practices; the extent to which familiarity with cognitive enhancement is related to its perceived acceptability; and relationships between the acceptability of cognitive enhancement and legalized doping in sport. Methods: A survey was administered through a computer-assisted telephone interviewing system to members of the Australian general public aged 18–101 years in the state of Queensland. Results: Of 1,265 participants, 7% agreed that cognitive enhancement is acceptable; 2.4% of the total sample said they had taken prescription drugs to enhance their concentration or alertness in the absence of a diagnosed disorder, and a further 8% said they knew someone who had done so. These participants were twice as likely to think cognitive enhancement was acceptable. Only 3.6% of participants agreed that people who play professional sport should be allowed to use performance-enhancing drugs if they wanted to. Participants who found cognitive enhancement acceptable were 9.5 times more likely to agree with legalized doping. Conclusions: Policies that facilitated the use of prescription drugs by healthy people for cognitive enhancement or permitted performance-enhancing drugs in sport would be at odds with the attitudes of the vast majority of our participants. Furthermore, our findings do not support media claims that the use of prescription drugs for cognitive enhancement is widespread in all sectors of society.","PeriodicalId":89316,"journal":{"name":"AJOB primary research","volume":"34 3 1","pages":"81 - 86"},"PeriodicalIF":0.0,"publicationDate":"2012-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"82786829","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Balancing Indigenous Principles and Institutional Research Guidelines for Informed Consent: A Case Study from the Peruvian Amazon","authors":"Mya Sherman, L. Berrang‐Ford, J. Ford, Marie‐Pierre Lardeau, I. Hofmeijer, Carol Zavaleta Cortijo","doi":"10.1080/21507716.2012.714838","DOIUrl":"https://doi.org/10.1080/21507716.2012.714838","url":null,"abstract":"Background: Current literature emphasizes the need to implement informed consent according to indigenous principles and worldviews. However, few studies explicitly address how informed consent can be effectively and appropriately obtained in indigenous communities in accordance with research ethics guidelines. Methods: This article uses participatory rural appraisal methods to identify and characterize community preferences for informed consent in two indigenous communities in the Peruvian Amazon, using Canadian federal research regulations and McGill University's Research Ethics Board as a case study to examine where institutional ethics guidelines constrain or support culturally appropriate notions of informed consent. Results: The study emphasizes the importance of tailoring informed consent procedures to community circumstances. Although both communities in this case study are located in the Peruvian Amazon, there were important distinctions between them, such as gender dynamics and social structure, which profoundly affected informed consent procedures. It is also important to consider the balance of collectivism and individualism at a community level in order to determine the role of individual and community consent. Conclusion: Research ethics guidelines generally allow for this contextualized approach. However, regulations still have the potential to constrain indigenous informed consent due to content requirements for informed consent forms, limited flexibility for modifications in the field, and requirements for individual consent.","PeriodicalId":89316,"journal":{"name":"AJOB primary research","volume":"65 1","pages":"53 - 68"},"PeriodicalIF":0.0,"publicationDate":"2012-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"85024110","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Incomplete and Unreported: Failure to Report Results of Incomplete Studies Results in Publication Bias","authors":"T. Shamliyan, R. Kane","doi":"10.1080/21507716.2012.714835","DOIUrl":"https://doi.org/10.1080/21507716.2012.714835","url":null,"abstract":"Background: Clinical research that is incomplete and unreported can lead to bias in health care decisions. Selective reporting of outcomes in clinical research overestimates the benefits and safety of treatments and threatens the integrity of systematic reviews of health care interventions. The Common Rule does not require that results be made available from clinical studies to research subjects and the scientific community. Methods: We analyzed all closed studies (i.e., no longer recruiting) registered in the online database ClinicalTrials.gov as of May 2010 to identify the number, length, and characteristics of complete and incomplete (terminated, suspended, or withdrawn) studies. Random samples of terminated studies, which were defined as studies in which the recruitment or enrollment of participants has been halted prematurely and will not resume, were analyzed to identify the reasons for termination and availability of the results in ClinicalTrials.gov or in published articles. Results: We identified 3,554 (6.2%) terminated studies among 57,233 closed studies. Reasons for termination were unknown in 34% and safety-related in 11% of terminated studies. Industry-funded studies omitted termination reasons less often than National Institutes of Health (NIH)-funded studies (OR 0.3, 95%CI: 0.1, 0.9). Drug studies omitted termination reasons more often than all other intervention studies. (OR 2; 95% CI: 1.1, 3.7) and also cited safety as the termination reason (OR 8.6; 95%CI: 1.9, 36.8) more often than other intervention studies. Terminated studies lasted on average 2.2 ± 1.9 years, and results were available for 5% in ClinicalTrials.gov and for 8% in peer-reviewed journals. Conclusions: Existing clinical research policies should mandate registration of all clinical trials in ClinicalTrials.gov as a condition of studies approval by institutional review boards. Mandatory posting of the results in ClinicalTrials.gov for all terminated studies, along with the exact reasons for termination irrespective of study funding and market or publication status, would enhance comprehensive evidence analysis by clinicians and policymakers, as well as public trust in clinical research.","PeriodicalId":89316,"journal":{"name":"AJOB primary research","volume":"31 1","pages":"1 - 18"},"PeriodicalIF":0.0,"publicationDate":"2012-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"86122261","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Proximity, Ethical Dilemmas, and Community Research Workers","authors":"K. Richman, L. Alexander, Gala True","doi":"10.1080/21507716.2012.714837","DOIUrl":"https://doi.org/10.1080/21507716.2012.714837","url":null,"abstract":"Background: In community-engaged research (CEnR), recruitment and data collection are often assigned to community research workers (CRWs). CRWs are hired because of close ties with target communities and presumed greater success recruiting and gathering data from marginalized populations. The value conflicts and personal stress facing CRWs have been described in the international context; however, less attention has been paid to these issues in U.S. settings. Methods: Qualitative interviews were held with CRWs about their experiences with CEnR. Interviews were transcribed and coded using Atlas.ti. Results: The data indicate that CRWs working in settings controlled by the participants, such as neighborhood streets and participant homes, are more likely to face conflicts between following the norms of research and meeting what they perceive to be their everyday obligations to help specific others (duties of relational ethics) and to keep themselves safe. This suggests that “physical proximity” (understood as degree of penetration into the physical domain of the target research community) is an important factor in the ethics of actual practice in CEnR. Conclusions: CRWs often experience ethical complexities that are simply not in the realm of experience of most higher level researchers. How CRWs navigate conflicting ethical obligations can affect the quality and usefulness of the data collected and thereby affect communities by influencing policies informed by these data. Soliciting the perspectives of CRWs early in the process of research design and development is recommended to maximize the benefits achievable through CEnR.","PeriodicalId":89316,"journal":{"name":"AJOB primary research","volume":"49 1","pages":"19 - 29"},"PeriodicalIF":0.0,"publicationDate":"2012-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"84085168","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Informed Consent in Genome-Scale Research: What Do Prospective Participants Think?","authors":"Susan Brown Trinidad,&nbsp;Stephanie M Fullerton,&nbsp;Julie M Bares,&nbsp;Gail P Jarvik,&nbsp;Eric B Larson,&nbsp;Wylie Burke","doi":"10.1080/21507716.2012.662575","DOIUrl":"https://doi.org/10.1080/21507716.2012.662575","url":null,"abstract":"<p><strong>Background: </strong>To promote effective genome-scale research, genomic and clinical data for large population samples must be collected, stored, and shared.</p><p><strong>Methods: </strong>We conducted focus groups with 45 members of a Seattle-based integrated healthcare delivery system to learn about their views and expectations for informed consent in genome-scale studies.</p><p><strong>Results: </strong>Participants viewed information about study purpose, aims, and how and by whom study data could be used to be at least as important as information about risks and possible harms. They generally supported a tiered consent approach for specific issues, including research purpose, data sharing, and access to individual research results. Participants expressed a continuum of opinions with respect to the acceptability of broad consent, ranging from completely acceptable to completely unacceptable. Older participants were more likely to view the consent process in relational - rather than contractual - terms, compared with younger participants. The majority of participants endorsed seeking study subjects' permission regarding material changes in study purpose and data sharing.</p><p><strong>Conclusions: </strong>Although this study sample was limited in terms of racial and socioeconomic diversity, our results suggest a strong positive interest in genomic research on the part of at least some prospective participants and indicate a need for increased public engagement, as well as strategies for ongoing communication with study participants.</p>","PeriodicalId":89316,"journal":{"name":"AJOB primary research","volume":"3 3","pages":"3-11"},"PeriodicalIF":0.0,"publicationDate":"2012-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1080/21507716.2012.662575","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"31307012","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Reproductive Decision Making and Genetic Predisposition to Sudden Cardiac Death.","authors":"Dorit Barlevy, David Wasserman, Marina Stolerman, Kathleen E Erskine, Siobhan M Dolan","doi":"10.1080/21507716.2012.662573","DOIUrl":"10.1080/21507716.2012.662573","url":null,"abstract":"<p><p>BACKGROUND: With current genetic technology, it is possible to detect mutations associated with long QT syndrome (LQTS), a hereditary cardiac arrhythmia syndrome. As a result, prospective parents diagnosed with LQTS will have to decide whether or not to prevent its transmission to future generations, either by not procreating or through the use of assisted reproductive technologies or prenatal testing. This paper explores how a hereditary predisposition to sudden cardiac death can influence reproductive decision making. METHODS: This study draws from interviews and focus groups with individuals who have personal or family histories of cardiac arrhythmia or sudden death. A keyword search was conducted on interview transcripts to identify quotes for analysis. RESULTS: Participants expressed complex, often ambivalent attitudes about the prospect of having a child with a predisposition to sudden cardiac death. Their comments reveal conflicting understandings of genetic responsibility and reflect the variable effects of personal experience on reproductive decision making. This paper compares attitudes towards LQTS and other genetic conditions in analyzing the themes that emerged in interviews and focus groups. CONCLUSIONS: The \"disability critique\" of prenatal testing should be applied carefully to a context of genetic predisposition to sudden cardiac death in order to understand reproductive decision making. Firsthand experience with the condition, among other factors, can weigh heavily in those decisions.</p>","PeriodicalId":89316,"journal":{"name":"AJOB primary research","volume":"3 3","pages":"30-39"},"PeriodicalIF":0.0,"publicationDate":"2012-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3400258/pdf/nihms386976.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"30781793","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}