153 research outputs found

    Peasantry or Power

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    Research Participation by Low‐Income and Racial/Ethnic Minority Groups: How Payment May Change the Balance

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    Minorities are underenrolled in clinical research trials, and one‐third of trials are underenrolled overall. The role of payment has not been studied at the national level as an explanation for enrollment patterns. Our objective was to examine the distribution of self‐reported previous research participation across different sociodemographic groups; to assess the public's perception of fair payment for a low‐risk medicine trial and the association between requested payment and sociodemographic characteristics; to estimate the amount of payment for a medication trial to achieve proportional representation of minorities and different socioeconomic groups. This was a cross‐sectional study with nationally representative data collected in 2011 by the C.S. Mott Children's Hospital National Poll on Children's Health. To determine the relationship between perceived fair payment and individual‐level characteristics, we used multivariable linear regression. With 60% participation rate, in a sample of 2,150 respondents 11% ( n = 221) of the sample had previously participated in medical research. Requested payment differed significantly by racial/ethnic group with Hispanics requesting more payment than non‐Hispanic whites (0.37 [95%CI 0.02, 0.72]) In contrast to payment at 49,49, 149, and 249,paymentat249, payment at 349 yielded proportional representation of racial/ethnic minority groups. Hispanics requested higher payment for research participation, suggesting a possible explanation for their underenrollment.Peer Reviewedhttp://deepblue.lib.umich.edu/bitstream/2027.42/100336/1/cts12084.pd

    A systematic review of interventions addressing limited health literacy to improve asthma self-management

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    Background: Supported asthma self-management improves health outcomes. However, people with limited health literacy, especially in lower-middle-income countries (LMICs), may need tailored interventions to enable them to realise the benefits. We aimed to assess the clinical effectiveness of asthma self-management interventions targeted at people with limited health literacy and to identify strategies associated with effective programmes. Methods: Following Cochrane methodology, we searched ten databases (January 1990 – June 2018; updated October 2019), without language restriction. We included controlled experimental studies whose interventions targeted health literacy to improve asthma self-management. Selection of papers, extraction of data and quality assessment were done independently by two reviewers. The primary outcomes were clinical (asthma control) and implementation (adoption/adherence to intervention). Analysis was narrative. Results: We screened 4318 titles and abstracts, reviewed 52 full-texts and included five trials. One trial was conducted in a LMIC. Risk of bias was low in one trial and high in the other four studies. Clinical outcomes were reported in two trials, both at high risk of bias: one of which reported a reduction in unscheduled care (number of visits in 6-month (SD); Intervention:0.9 (1.2) vs Control:1.8 (2.4), P = 0.001); the other showed no effect. None reported uptake or adherence to the intervention. Behavioural change strategies typically focused on improving an individual’s psychological and physical capacity to enact behaviour (eg, targeting asthma-related knowledge or comprehension). Only two interventions also targeted motivation; none sought to improve opportunity. Less than half of the interventions used specific self-management strategies (eg, written asthma action plan) with tailoring to limited health literacy status. Different approaches (eg, video-based and pictorial action plans) were used to provide education. Conclusions: The paucity of studies and diversity of the interventions to support people with limited health literacy to self-manage their asthma meant that the impact on health outcomes remains unclear. Given the proportion of the global population who have limited health literacy skills, this is a research priority

    Practice-Driven Evaluation of a Multi-layered Psychosocial Care Package for Children in Areas of Armed Conflict

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    Psychosocial and mental health service delivery frameworks for children in low-income countries are scarce. This paper presents a practice-driven evaluation of a multi-layered community-based care package in Burundi, Indonesia, Sri Lanka and Sudan, through a set of indicators; (a) perceived treatment gains; (b) treatment satisfaction; (c) therapist burden; (d) access to care; (e) care package costs. Across four settings (n = 29,292 children), beneficiaries reported high levels of client satisfaction and moderate post-treatment problem reductions. Service providers reported significant levels of distress related to service delivery. Cost analyses demonstrated mean cost per service user to vary from 3.46 to 17.32 € depending on country and specification of costs. The results suggest a multi-layered psychosocial care package appears feasible and satisfactory in reaching out to substantial populations of distressed children through different levels of care. Future replication should address therapist burden, cost reductions to increase sustainability and increase evidence for treatment efficacy

    A review of social dilemmas and social-ecological traps in conservation and natural resource management

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    Successful conservation depends as much on people working together as it does on sound science and good governance. Research on cooperation in businesses, economics, psychology, and natural resource management has identified shared social and social-ecological dynamics, reviewed and categorized in this article that can create unwanted surprises and problems for conservation efforts. Cooperation may fail when: (1) individual and group benefits are in conflict (social dilemmas) or (2) social-ecological systems become caught in problem-causing and problem-enhancing feedbacks (SES traps). Knowing about and recognizing these dynamics can help decision makers to understand and change key elements of problems and learn from the experiences of others. Social dilemmas have winners and losers, and involve give-some or take-some choices; SES traps are lose-lose situations. Solutions to problems of cooperation in conservation contexts involve identifying the conservation objective and context, diagnosing systemic social dilemmas and SES traps, and developing practical solutions that work with group processes and individuals toward shared and positively reinforcing goals, goal structures, and expectations. Research on cooperation in conservation has largely ignored problems of scale, scaling, and group heterogeneity. The field would benefit from a shift from a probabilistic, empirical approach to a stronger theory-driven, mechanistic, and more diagnostic approach

    Guidelines for Family-Centered Care in the Neonatal, Pediatric, and Adult ICU.

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    OBJECTIVE: To provide clinicians with evidence-based strategies to optimize the support of the family of critically ill patients in the ICU. METHODS: We used the Council of Medical Specialty Societies principles for the development of clinical guidelines as the framework for guideline development. We assembled an international multidisciplinary team of 29 members with expertise in guideline development, evidence analysis, and family-centered care to revise the 2007 Clinical Practice Guidelines for support of the family in the patient-centered ICU. We conducted a scoping review of qualitative research that explored family-centered care in the ICU. Thematic analyses were conducted to support Population, Intervention, Comparison, Outcome question development. Patients and families validated the importance of interventions and outcomes. We then conducted a systematic review using the Grading of Recommendations, Assessment, Development and Evaluations methodology to make recommendations for practice. Recommendations were subjected to electronic voting with pre-established voting thresholds. No industry funding was associated with the guideline development. RESULTS: The scoping review yielded 683 qualitative studies; 228 were used for thematic analysis and Population, Intervention, Comparison, Outcome question development. The systematic review search yielded 4,158 reports after deduplication and 76 additional studies were added from alerts and hand searches; 238 studies met inclusion criteria. We made 23 recommendations from moderate, low, and very low level of evidence on the topics of: communication with family members, family presence, family support, consultations and ICU team members, and operational and environmental issues. We provide recommendations for future research and work-tools to support translation of the recommendations into practice. CONCLUSIONS: These guidelines identify the evidence base for best practices for family-centered care in the ICU. All recommendations were weak, highlighting the relative nascency of this field of research and the importance of future research to identify the most effective interventions to improve this important aspect of ICU care
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