45 research outputs found

    The pediatric emergency department care experience: A quality measure

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    To develop and validate a measure of the quality of the pediatric emergency department care experience from the parent perspective. This was a multiphase study conducted at a tertiary-care pediatric health system using qualitative and quantitative methods. A list of candidate questions was developed to measure each of eight dimensions of family-centered pediatric emergency care described in a published framework. This list was evaluated and refined using the Question Appraisal System (QAS-99) followed by cognitive interviewing methods. Remaining questions were field tested using survey methods via telephone interviews with randomly selected parents. Composite scores to measure each of the eight dimensions of family-centered pediatric emergency care were calculated. Reliability was evaluated using measures of internal consistency. Construct validity was evaluated by measuring the association of each question and composite scores with overall satisfaction. A pool of 77 questions was reduced to 51 using QAS-99 criteria. Cognitive interviews with 19 parents resulted in a final list of 24 questions for field testing. With a response rate of 46%, 404 parents participated in the field test. Each individual question exhibited a significant positive association with overall satisfaction. Measures of internal consistency did not support the composite scores based on the initial eight dimensions. An exploratory factor analysis resulted in alternative composite measures that exhibited acceptable reliability and construct validity. This study has resulted in a measure that can be used to inform quality improvement work aimed at improving the pediatric emergency department care experience

    Law and Family Formation Among LGBQ-Parent Families

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    This article addresses how the law affects family formation among families with lesbian, gay, bisexual, and queer (LGBQ) parents in the United States. Our discussion draws on a socio-legal approach to law that focuses not only on the law on the books (what we refer to as “legal barriers”) but also on issues like how the law is practiced, how people experience the law in everyday life, and how the law serves as an interpretive framework through which people understand themselves and their families (what we refer to as “social barriers”). In our review, we highlight how attorneys can play a role in valuing and advancing rights for LGBQ-parent families and LGBTQ prospective parents

    A Multi-Center, Qualitative Assessment of Pediatrician and Maternal Perspectives on Rotavirus Vaccines and the Detection of Porcine circovirus

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    <p>Abstract</p> <p>Background</p> <p>In 2010, researchers using novel laboratory techniques found that US-licensed rotavirus vaccines contain DNA or DNA fragments from <it>Porcine circovirus </it>(PCV), a virus common among pigs but not believed to cause illness in humans. We sought to understand pediatricians' and mothers' perspectives on this finding.</p> <p>Methods</p> <p>We conducted three iterations of focus groups for pediatricians and non-vaccine hesitant mothers in Seattle, WA, Cincinnati, OH, and Rochester, NY. Focus groups explored perceptions of rotavirus disease, rotavirus vaccination, and attitudes about the detection of PCV material in rotavirus vaccines.</p> <p>Results</p> <p>Pediatricians understood firsthand the success of rotavirus vaccines in preventing severe acute gastroenteritis among infants and young children. They measured this benefit against the theoretical risk of DNA material from PCV in rotavirus vaccines, determining overall that the PCV finding was of no clinical significance. Particularly influential was the realization that the large, randomized clinical trials that found both vaccines to be highly effective and safe were conducted with DNA material from PCV already in the vaccines.</p> <p>Most mothers supported the ideal of full disclosure regarding vaccination risks and benefits. However, with a scientific topic of this complexity, simplified information regarding PCV material in rotavirus vaccines seemed frightening and suspicious, and detailed information was frequently overwhelming. Mothers often remarked that if they did not understand a medical or technical topic regarding their child's health, they relied on their pediatrician's guidance.</p> <p>Many mothers and pediatricians were also concerned that persons who abstain from pork consumption for religious or personal reasons may have unsubstantiated fears of the PCV finding.</p> <p>Conclusions</p> <p>Pediatricians considered the detection of DNA material from PCV in rotavirus vaccines a "non-issue" and reported little hesitation in continuing to recommend the vaccines. Mothers desired transparency, but ultimately trusted their pediatrician's recommendation. Both vaccines are currently approved for their intended use, and no risk of human PCV illness has been reported. Communicating this topic to pediatricians and mothers requires sensitivity to a broad range of technical understanding and personal concerns.</p

    Anticipating parenthood among Lesbian, Gay, Bisexual, and Heterosexual young adults without children in Portugal: predictors and profiles

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    Parenthood is a highly valued life goal, independent of one’s sexual orientation. However, the majority of studies exploring young adults’ parenthood plans have relied exclusively on samples of heterosexual individuals. This study aimed (i) to explore differences in parenthood intentions as a function of sexual orientation, (ii) to investigate to what extent sociodemographic and psychological characteristics predict parenthood intentions of lesbian, gay, bisexual (LGB), and heterosexual individuals, (iii) to test the mediating effect of stigma between sexual orientation and parenthood intentions, and (iv) to identify and characterize profiles of prospective parenthood (through cluster analysis). Data were gathered using an online survey from 375 self-identified LGB and heterosexual young adults without children in Portugal, with a mean age of 25.83 years old (SD = 4.49). Findings indicated that LGB individuals were less likely to intend to have children than heterosexual individuals; furthermore, among LGB individuals, lesbian women expressed stronger intentions to have children than did gay men. Similarities between heterosexual and LGB young adults were observed concerning the psychological determinants of parenthood intentions. Four distinctive profiles of prospective parenthood were identified: aspiring parents not anticipating stigma, aspiring parents anticipating stigma, childfree intent, and childfree ambivalent. Lesbian and bisexual women mostly populated the childfree ambivalent cluster; in contrast, the aspiring parents anticipating stigma cluster contained an overrepresentation of men, including sexual minority men. Professionals may want to attend to communalities and specificities of prospective parenthood as a function of sexual orientation, in order to provide unbiased and culturally competent support to sexual minority individuals

    Impacts of an Invasive Snail (Tarebia granifera) on Nutrient Cycling in Tropical Streams: The Role of Riparian Deforestation in Trinidad, West Indies

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    Non-native species and habitat degradation are two major catalysts of environmental change and often occur simultaneously. In freshwater systems, degradation of adjacent terrestrial vegetation may facilitate introduced species by altering resource availability. Here we examine how the presence of intact riparian cover influences the impact of an invasive herbivorous snail, Tarebia granifera, on nitrogen (N) cycling in aquatic systems on the island of Trinidad. We quantified snail biomass, growth, and N excretion in locations where riparian vegetation was present or removed to determine how snail demographics and excretion were related to the condition of the riparian zone. In three Neotropical streams, we measured snail biomass and N excretion in open and closed canopy habitats to generate estimates of mass- and area-specific N excretion rates. Snail biomass was 2 to 8 times greater and areal N excretion rates ranged from 3 to 9 times greater in open canopy habitats. Snails foraging in open canopy habitat also had access to more abundant food resources and exhibited greater growth and mass-specific N excretion rates. Estimates of ecosystem N demand indicated that snail N excretion in fully closed, partially closed, and open canopy habitats supplied 2%, 11%, and 16% of integrated ecosystem N demand, respectively. We conclude that human-mediated riparian canopy loss can generate hotspots of snail biomass, growth, and N excretion along tropical stream networks, altering the impacts of an invasive snail on the biogeochemical cycling of N

    Post-intervention Status in Patients With Refractory Myasthenia Gravis Treated With Eculizumab During REGAIN and Its Open-Label Extension

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    OBJECTIVE: To evaluate whether eculizumab helps patients with anti-acetylcholine receptor-positive (AChR+) refractory generalized myasthenia gravis (gMG) achieve the Myasthenia Gravis Foundation of America (MGFA) post-intervention status of minimal manifestations (MM), we assessed patients' status throughout REGAIN (Safety and Efficacy of Eculizumab in AChR+ Refractory Generalized Myasthenia Gravis) and its open-label extension. METHODS: Patients who completed the REGAIN randomized controlled trial and continued into the open-label extension were included in this tertiary endpoint analysis. Patients were assessed for the MGFA post-intervention status of improved, unchanged, worse, MM, and pharmacologic remission at defined time points during REGAIN and through week 130 of the open-label study. RESULTS: A total of 117 patients completed REGAIN and continued into the open-label study (eculizumab/eculizumab: 56; placebo/eculizumab: 61). At week 26 of REGAIN, more eculizumab-treated patients than placebo-treated patients achieved a status of improved (60.7% vs 41.7%) or MM (25.0% vs 13.3%; common OR: 2.3; 95% CI: 1.1-4.5). After 130 weeks of eculizumab treatment, 88.0% of patients achieved improved status and 57.3% of patients achieved MM status. The safety profile of eculizumab was consistent with its known profile and no new safety signals were detected. CONCLUSION: Eculizumab led to rapid and sustained achievement of MM in patients with AChR+ refractory gMG. These findings support the use of eculizumab in this previously difficult-to-treat patient population. CLINICALTRIALSGOV IDENTIFIER: REGAIN, NCT01997229; REGAIN open-label extension, NCT02301624. CLASSIFICATION OF EVIDENCE: This study provides Class II evidence that, after 26 weeks of eculizumab treatment, 25.0% of adults with AChR+ refractory gMG achieved MM, compared with 13.3% who received placebo

    Minimal Symptom Expression' in Patients With Acetylcholine Receptor Antibody-Positive Refractory Generalized Myasthenia Gravis Treated With Eculizumab

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    The efficacy and tolerability of eculizumab were assessed in REGAIN, a 26-week, phase 3, randomized, double-blind, placebo-controlled study in anti-acetylcholine receptor antibody-positive (AChR+) refractory generalized myasthenia gravis (gMG), and its open-label extension

    Instrumentation issues in implementation science

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    Background Like many new fields, implementation science has become vulnerable to instrumentation issues that potentially threaten the strength of the developing knowledge base. For instance, many implementation studies report findings based on instruments that do not have established psychometric properties. This article aims to review six pressing instrumentation issues, discuss the impact of these issues on the field, and provide practical recommendations. Discussion This debate centers on the impact of the following instrumentation issues: use of frameworks, theories, and models; role of psychometric properties; use of ‘home-grown’ and adapted instruments; choosing the most appropriate evaluation method and approach; practicality; and need for decision-making tools. Practical recommendations include: use of consensus definitions for key implementation constructs; reporting standards (e.g., regarding psychometrics, instrument adaptation); when to use multiple forms of observation and mixed methods; and accessing instrument repositories and decision aid tools. Summary This debate provides an overview of six key instrumentation issues and offers several courses of action to limit the impact of these issues on the field. With careful attention to these issues, the field of implementation science can potentially move forward at the rapid pace that is respectfully demanded by community stakeholders

    Ohio poll

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    Title from PDF cover (viewed on July 21, 2008); "Project Report For: Ohio Developmental Disabilities Council."; "December, 1999."; Appendices A (Detailed tabular results), C (Questionnaire), and D (Open-ende codes) not included
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