Patients with newly-described or rare genetic findings are turning to social media to find and connect with others. Blogs, Facebook groups, and Twitter have all been reported as tools for patients to connect with one another. However, the preferences for social media use and privacy among patients, their families, and these communities have not been well characterized. To explore preferences about privacy and membership guidelines, an online survey was administered to two web-based patient registries, Simons Variation in Individuals Project (www.simonsvipconnect.org) and GenomeConnect (www.genomeconnect.org). Over a three-month period, invitations were sent to 2524 individuals and 103 responses (4%) were received and analyzed. Responses indicate that Facebook is the most popular resource accessed within this sample population (99%). Participants used social media to look for information about their diagnosis or test results (83%), read posts from rare disease groups or organizations (73%), participate in conversations about their diagnosis (67%), and connect with others to find support (58%). Focusing on privacy issues in social media, respondents indicate that membership and access impact the level of comfort in sharing personal or medical information. Nearly 60% of respondents felt uncomfortable sharing photos or medical information within a public Facebook group, whereas only 12% of respondents felt uncomfortable sharing in private group targeted to families alone. Using this preliminary data concerning social media use and privacy, we developed points for genetic counselors to incorporate when discussing available support resources for patients with a new, or rare, genetic diagnosis or genetic test result. Genetic counselors are trained to provide anticipatory guidance to families adapting to new genetic information, and are well-equipped to help patients consider their preferences about using social media as a source of information and support. 相似文献
This opinion paper takes aim at an error made recently by Clarivate Analytics in which it sent out an email that congratulated academics for becoming exclusive members of academia’s most cited elite, the Highly Cited Researchers (HCRs). However, that email was sent out to an undisclosed number of non-HCRs, who were offered an apology shortly after, through a bulk mail, which tried to down-play the importance of the error, all the while praising the true HCRs. When Clarivate Analytics senior management was contacted, the company declined to offer an indication of the number of academics who had been contacted and erroneously awarded the HCR status. We believe that this regrettable blunder, together with the opacity offered by the company, fortify the corporate attitude about the value of the journal impact factor (JIF), and what it represents, namely a marketing tool that is falsely used to equate citations with quality, worth, or influence. The continued commercialization of metrics such as the JIF is at the heart of their use to assess the “quality” of a researcher, their work, or a journal, and contributes to a great extent to driving scientific activities towards a futile endeavor. 相似文献
The purpose of this systematic review is to look into how the experience of husbands of women treated for breast cancer is approached in the literature. Between July and August 2015, the databases of PubMed, SciELO and BIREME were searched for papers published in the period January 2005–July 2015; a final sample of 23 papers was defined. The studies listed several negative and positive aspects of the experience, such as financial difficulties, psychological distress, lack of coping skills among family members, social recognition of the role of caregiver, acquisition of new responsibilities and the maturing of family members. 相似文献
Profound changes in gender roles have taken place over the past several decades in the United States. Women’s roles have changed most: women are marrying later in life and at lower rates, having fewer children, and working more outside of the household. “Career women” are the new normal and housewifery has gone out of fashion. At the same time, women have become less happy. We use the US General Social Surveys from 1972 to 2014 to explore these latest trends. We find that, until recently, women were happier to be housewives or to work part-time than full-time, especially, women who are older, married, with children, in middle or upper class, and living in suburbs or smaller places. The effect size of housewifery on subjective wellbeing (SWB) is mild to moderate, at about a fourth to a third of the effect of being unemployed. Therefore, we argue that one possible reason for the decline in average happiness for women was increased labor force participation. Yet, the happiness advantage of housewifery is declining among younger cohorts and career women may become happier than housewives in the future. 相似文献
Although psychopathy has historically been associated with a lack of emotion, recent research has suggested that psychopathy may represent a tendency to externalize the experience of unpleasant emotions, including shame, which could be seen as an adaptive strategy within an evolutionary framework. However, more empirical research is needed to build on this argument. This study tested a novel evolutionary-based model involving pathways associating the impact of harsh rearing experiences (warmth and safeness experiences and traumatic shameful experiences) with psychopathic traits as well as the indirect effects of external shame and shame coping strategies in this association. This study also tested the invariance of this model across gender. A youth community sample (N = 703; 58.9% girls) completed self-report questionnaires on the impact of harsh rearing experiences, external shame, shame coping strategies, and psychopathic traits. The results suggested that the impact of harsh rearing experiences was directly and indirectly (through external shame and shame coping strategies) associated with psychopathic traits. The model partially explained the endorsement of psychopathic traits in boys and girls, although gender differences were found in some of the pathways. These findings offer support for conceptualizing psychopathic traits as an adaptive strategy to cope with the impact of harsh rearing experiences, opening new perspectives for prevention and treatment.
This study focuses on retraction notices from two major Latin American/Caribbean indexing databases: SciELO and LILACS. SciELO includes open scientific journals published mostly in Latin America/the Caribbean, from which 10 % are also indexed by Thomson Reuters Web of Knowledge Journal of Citation Reports (JCR). LILACS has a similar geographical coverage and includes dissertations and conference/symposia proceedings, but it is limited to publications in the health sciences. A search for retraction notices was performed in these two databases using the keywords “retracted”, “retraction” “withdrawal”, “withdrawn”, “removed” and “redress”. Documents were manually checked to identify those that actually referred to retractions, which were then analyzed and categorized according to the reasons alleged in the notices. Dates of publication/retraction and time to retraction were also recorded. Searching procedures were performed between June and December 2014. Thirty-one retraction notices were identified, fifteen of which were in JCR-indexed journals. “Plagiarism” was alleged in six retractions of this group. Among the non-JCR journals, retraction reasons were alleged in fourteen cases, twelve of which were attributed to “plagiarism”. The proportion of retracted articles for the SciELO database was approximately 0.005 %. The reasons alleged in retraction notices may be used as signposts to inform discussions in Latin America on plagiarism and research integrity. At the international level, these results suggest that the correction of the literature is becoming global and is not limited to mainstream international publications. 相似文献
Although there is a prototype narrative for complicated grief (CG), there are neither divergent nor convergent validity studies of its clinical value. We evaluated the CG prototype narrative using a sociodemographic questionnaire and the Clinical Interview for Complicated Grief Diagnosis. We first conducted a convergent validation analysis followed by a divergent validation analysis. Results showed that participants with CG identified significantly more with the complicated grief prototype narrative than participants without CG. 相似文献
Even though there is a general presence of aesthetics in school curricula in most of western countries, both at the level of terminology and at the level of choice and definition of contents, objectives and skills to be developed, the approach to sports and physical education potential for the development of aesthetic education of students still does not seem to be a reality in the agenda of this subject. Moreover, it is not transversal in terms of its different didactic contents. In order to explore its relevance, the aim of this work was to deepen how aesthetics is internal and central to sports experience, and which elements of sports and physical education lived experiences can be relevant in the promotion and development of the aesthetic sensibility of students. We propose the deepening of the subject through an hermeneutical qualitative research approach, confronting the content collected in 19 semi-structured interviews that enabled the thematic analysis of its content, and through it, the discussion of viewpoints of representative subjects among those that are the main players in the consideration of an aesthetic education through sport, namely physical education teachers and researchers in the context of aesthetics and sports sciences. With the information gathered and after its processing, we could conclude that there are aesthetic elements of sport's experience that should be taken into account in an aesthetic educational point of view of physical education, namely: complexity, diversity, playability, tension between drama and accuracy, overcoming experience, risk and vulnerability, unpredictable storylines and uncertainty, technique and effectiveness. 相似文献
Studies in Philosophy and Education - This work relates L. S. Vygotsky’s theory to the rhetorical and poetic pedagogy, which is a set of educational ideas and practices derived from the... 相似文献