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691.
Heather Mae Rocha Juliann M. Savatt Erin Rooney Riggs Jennifer K. Wagner W. Andrew Faucett Christa Lese Martin 《Journal of genetic counseling》2018,27(2):470-480
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
692.
Marci M. Lesperance Erin Winkler Tori L. Melendez Beverly M. Yashar 《Journal of genetic counseling》2018,27(3):597-607
The aim of this study was to obtain patient and parent perspectives on genetic evaluation of hearing loss, in order to identify motivators, expectations, and barriers. Three focus groups were conducted following a semi-structured discussion guide, led by an independent moderator. Participants were hearing parents of children with permanent hearing loss or deaf adults. Qualitative content analysis was used to develop a codebook and identify major themes and subthemes. Participant views were compared to national guidelines. The 28 participants comprised 23 parents representing 21 unique families and 5 deaf adults. 13/21 families and 0/5 adults reported comorbidities, 4/21 families and 3/5 adults had a positive family history, and 12/21 families versus 0/5 adults had utilized genetics services. A common theme among adults and parents was a curiosity as to the cause of hearing loss. Parents were motivated to detect comorbidities and optimize care for hearing loss. Some parents felt overwhelmed by the hearing loss and unprepared to pursue early genetic evaluation as recommended in guidelines. Several reported positive experiences following genetics consultation, while others reported unease and unmet expectations. Notably, both parents and adults expressed ambivalence regarding the desire for genetic knowledge. Financial concerns and difficulties obtaining a referral were cited as extrinsic barriers. For parents of children with hearing loss, both the presence of comorbidities and a positive family history were drivers of genetics consultation and/or genetic testing. We identified educational opportunities for both patients and providers that would improve informed decision-making and increase access to genetic services. Consideration of the patient/family perspective and their decision-making processes, along with flexibility in the approach to genetics evaluation and its timing, will optimize both the development and implementation of guidelines. 相似文献
693.
694.
Alan E. Kazdin Adam Glick Jennifer Pope Ted J. Kaptchuk Bernadette Lecza Erin Carrubba Emily McWhinney Natasha Hamilton 《International Journal of Clinical and Health Psychology》2018,18(2):91-101
Background/Objective: The study evaluated two variations of Parent Management Training (PMT) for children referred to treatment for oppositional, aggressive, and antisocial behavior. The goal was to evaluate the impact of multiple enhancements to optimize common and placebo factors to augment therapeutic change. Method: The families of all children (N=138, 39 girls and 99 boys, ages 6-13) received PMT. One half of the families were assigned to receive an enhanced version with multiple additions designed to increase bonding of the parent to the therapist, professionalism of treatment and setting, credibility of the intervention, and expectancies for therapeutic change. Assessment included multiple treatment outcome measures of the child (problem behaviors, psychiatric symptoms, social competence, and adaptive functioning) and parents (depression, stress, and family relations) showed marked improvements over the course of treatment, and several process measures (therapeutic alliance, credibility of the procedures, expectancy for change). Results: The results indicated that children and parents made marked improvement in all the treatment outcome measures. The vast majority of children fell within the normative range at posttreatment on problem and prosocial behaviors. The two treatment conditions were no different in outcomes for children or parents. Conclusion: PMT led to marked changes in treatment outcome. 相似文献
695.
Can perspective taking improve intergroup attitudes in conflict contexts? How does a context of conflict shape people's responses to perspective-taking tasks and their ultimate effectiveness? The present study addressed these questions by examining the effect of perspective taking (compared with a perspective giving and a control condition) on intergroup attitudes between Trump and Clinton supporters (N = 537) one month after the 2016 presidential election. Perspective taking had positive effects on some intergroup attitudes: It increased warmth toward the outgroup (thermometer ratings), outgroup tolerance, perceived similarities between groups, and marginally increased positive outgroup evaluation. This study also sheds light on the mechanisms that might reduce the effectiveness of perspective taking in conflict settings by assessing the content and the effects of the induced perspectives in response to perspective-taking task. About half of the induced perspective-taking narratives involved negative views of the other, which were associated with worse intergroup outcomes. In addition, higher perceived intensity of the conflict between Trump and Clinton supporters and more negative emotions about the election outcome predicted more induced negative perspectives as a response to the perspective-taking task. In turn, negative perspectives were associated with more negative intergroup attitudes. To sum up, while perspective taking had an overall positive impact on intergroup attitudes in this conflict setting, its impact seems to be contingent upon the content of induced perspective-taking narratives. 相似文献
696.
Nearly one in five clinically confirmed pregnancies ends in a loss before 20 weeks (Bardos et al., 2015). Despite the prevalence of miscarriage, many women and partners experience a lack of acknowledgment and support while also encountering complicated concerns related to the intersection of perinatal loss, culture, religious and spiritual issues, medical treatment, their reproductive stories, and grief (Randolph et al., 2015). Counselors working with these clients must address complex cultural considerations. As such, we review key cultural and religious/spiritual issues related to early pregnancy loss and offer recommendations for practice based on the current literature in the context of the Association for Spiritual, Ethical, and Religious Values in Counseling (2009) counseling competencies. 相似文献
697.
Dulek Erin B. Russin Sarah E. Rudd Melissa F. Griffith Frances J. Stein Catherine H. 《Journal of child and family studies》2021,30(6):1607-1618
Journal of Child and Family Studies - Although parents often provide care for adult children coping with serious mental illness, adult siblings are typically expected to assume caregiving... 相似文献
698.
As we listen to speech, our ability to understand what was said requires us to retrieve and bind together individual word meanings into a coherent discourse representation. This so‐called semantic unification is a fundamental cognitive skill, and its development relies on the integration of neural activity throughout widely distributed functional brain networks. In this proof‐of‐concept study, we examine, for the first time, how these functional brain networks develop in children. Twenty‐six children (ages 4–17) listened to well‐formed sentences and sentences containing a semantic violation, while EEG was recorded. Children with stronger vocabulary showed N400 effects that were more concentrated to centroparietal electrodes and greater EEG phase synchrony (phase lag index; PLI) between right centroparietal and bilateral frontocentral electrodes in the delta frequency band (1–3 Hz) 1.27–1.53 s after listening to well‐formed sentences compared to sentences containing a semantic violation. These effects related specifically to individual differences in receptive vocabulary, perhaps pointing to greater recruitment of functional brain networks important for top‐down semantic unification with development. Less skilled children showed greater delta phase synchrony for violation sentences 3.41–3.64 s after critical word onset. This later effect was partly driven by individual differences in nonverbal reasoning, perhaps pointing to non‐verbal compensatory processing to extract meaning from speech in children with less developed vocabulary. We suggest that functional brain network communication, as measured by momentary changes in the phase synchrony of EEG oscillations, develops throughout the school years to support language comprehension in different ways depending on children's verbal and nonverbal skill levels. 相似文献
699.
The rapid clinical implementation of cell-free DNA (cfDNA) screening, a non-invasive method of prenatal genetic screening, has outpaced research on its social and ethical implications. This study is the first to compare the ethical and practical views of Spanish- and English-speaking pregnant women in the United States about cfDNA screening. Semi-structured interviews were conducted with diverse Spanish- and English-speaking women who had received prenatal care at a large academic medical center. Of the 24 interviewees, ten were Latinas who were interviewed in Spanish; English-language interviews were conducted with seven non-Hispanic Asian and seven non-Hispanic White women. Participants held positive opinions concerning the accuracy of cfDNA screening and often noted that it would enhance preparedness. Participants also expressed concerns about the possibility of inaccurate results and the potentially negative effects of cfDNA screening on the experience of pregnancy. Differences emerged between Spanish and English speakers in their portrayals of their relationships with prenatal health care providers, the extent to which they questioned providers’ advice, their ethical concerns, and their informational needs. We emphasize the importance of customizing prenatal test counseling to the needs of the individual patient, providing educationally appropriate counseling and literature, and mitigating potential language barriers. 相似文献
700.
It's more than skin‐deep: The relationship between social victimization and telomere length in adolescence 下载免费PDF全文
Maria E. Guarneri‐White Allyson A. Arana Erin Q. Boyd Lauri A. Jensen‐Campbell 《Aggressive behavior》2018,44(4):337-347