Perceptions of Academic Health Science Research Center Personnel Regarding Informed Consent Processes and Therapeutic Misconception

Introduction: Instrumentation exists to measure voluntariness and misunderstanding in informed consent processes. However, research personnel’s perspectives about using instrumentation to measure therapeutic misconceptions in research participants has not been reported. We designed a workshop to promote research personnel knowledge of emerging instrumentation and to study the perceptions of research personnel regarding such instruments.

Methods and Findings: Two nationally recognized experts who have developed psychometric instruments to measure aspects of informed consent presented their recent findings to research personnel of the Medical University of South Carolina at a one-day workshop. Following the presentations, workshop attendees divided into two focus groups and shared their perceptions regarding the presentation content. Inductive thematic analysis detected themes related to informed consent processes including: investigator/provider role clarity; investigator transparency; therapeutic misconception; and screening subjects for understanding.

Conclusion: Our findings suggest future directions in applied, proactive empirical research to better understand investigator perceptions and practices related to transparency in research, and to develop instrumentation to detect risks to the integrity of informed consent in order to promote voluntariness and autonomy and minimize therapeutic misconception in research practices.     

The Politics of Expertise in Congress and the News Media

Objective. Experts are increasingly active in U.S. policymaking, but what accounts for their varied visibility is unclear. The agenda-setting and media studies literature suggest that experts are generally neutral, distant actors in policymaking whose products are made visible by Congress and the news media when helpful. This study examines how and when the intentional efforts of experts can also affect their relative visibility and whether a proliferation of expert organizations, as has occurred in American policymaking in recent decades, is correctly viewed as creating conditions for more rational, thoughtful decisionmaking, as some existing scholarship might suggest. Methods. I consider the conveyance of expertise among a sample of 66 public policy think tanks in congressional testimony and three national newspapers between 1991 and 1995. In a multivariate analysis, I evaluate what accounts for the quantity of congressional and media visibility. I then use a content analysis to examine differences in the nature of visibility received by think tanks. Results. Washington-based think tanks and think tanks of no identifiable ideology have some advantage in gaining congressional and media visibility overall. Think tanks deemed credible receive more, and more substantive, visibility than those that are ideological and marketing-oriented. Conclusions. Cumulatively, my findings suggest that more credible, staid, not identifiably ideological expert organizations are slightly favored by congressional staff members and journalists to provide guidance on issues and news stories. More ideological and marketing-oriented sources of expertise, by contrast, are more relied upon to build support for ideas, either in staged congressional hearings or on the editorial pages of newspapers. Expert organizations can affect their relative visibility; the evidence is mixed on whether their proliferation makes policymaking and decisionmaking better informed or more rational or thoughtful.     

Public meetings as sources of citizen input: Comparing attendees with citizens at large

Although public meetings are the most frequently used method for obtaining citizen input into public decision-making, there is little systematic evidence comparing attendees with citizens at large. This paper addresses this gap in the literature by analyzing results from a series of public meetings and a random-sample telephone survey. The public meetings and telephone survey were conducted in Hillsborough County, Florida to obtain citizen input for the purpose of establishing spending priorities for more than $39 million in federal block grant funds. Findings include representation at public meetings on a number of factors, including race, Hispanic ethnicity, and low-income status. Attendees favor redistributive activities more often than citizens at large; however, both attendees and the general public agree on the importance of funding activities serving certain vulnerable populations, including seniors, persons with disabilities, and victims of domestic violence.     

Measuring intention to refer: Older adults and social service agencies

The public is encouraged to engage in socially responsible behaviors such as helping people get needed services, possibly by referring them. However, referral behavior is little researched. Informed by the theory of planned behavior, intent to refer older adults in need to the Connecticut’s Gatekeeper Program (GP) which identifies elders at risk and connects them with community resources was studied and the Social Service Agency Referral Scale (SSARS) was developed. Senior center attendees, seniors who received GP training, and referrers to the state’s GP were involved. SSARS and its subscales were internally consistent (Cronbach’s α = .90, with α ≥ .733 for each subscale). SSARS was strongly correlated with a validated social responsibility scale (r = .48). Knowledge gained from the training enhanced the associated intention subscale. With little modification, SSARS could be used to elucidate similar efforts. Additionally, the process used to create SSARS could be replicated to develop related instruments.     

Using Promotores Programs to Improve Latino Health Outcomes: Implementation Challenges for Community-Based Nonprofit Organizations

ABSTRACT

Promotores are community lay health workers who provide outreach and services to Latinos. Little research on the promotores programs exists, and the focus of this article is to identify the challenges faced by community-based nonprofits when implementing promotores programs. To explore this type of program, telephone interviews were conducted with 10 promotores academic experts and nonprofit executives. The results suggest that implementation challenges fall into three major categories: the lack of standardized information on promotores programs, labor issues, and organizational costs. Future recommendations made in the article highlight promotores recruitment and retention strategies and the development of a clearinghouse of programmatic implementation information for community-based nonprofits.     

DeFinettian Consensus

It is always possible to construct a real function , given random quantities X and Y with continuous distribution functions F and G, respectively, in such a way that (X) and (Y), also random quantities, have both the same distribution function, say H. This result of De Finetti introduces an alternative way to somehow describe the `opinion' of a group of experts about a continuous random quantity by the construction of Fields of coincidence of opinions (FCO). A Field of coincidence of opinions is a finite union of intervals where the opinions of the experts coincide with respect to that quantity of interest. We speculate on (dis)advantages of Fields of Opinion compared to usual `probability' measures of a group and on their relation with a continuous version of the well-known Allais' paradox.     

Bittersweet

ABSTRACT

For Uitoto communities in the borderlands of the Colombian Amazon, ordinary sociality depends on the effective rendering of sweet social relations from a universe of bitterly antisocial possibilities. Human personhood and kinship must be continually materialized through the transformation of bitter substances and sensations into sweet ones, and the incorporation of sweetness as a sensible quality of moral personhood. In a context where the sensorium is frequently transposed into a moral register, taste qualities both index and transmit the moral qualities of persons, and the bittersweet potentialities of kinship relations are mediated through botanical instruments of moral transformation. This paper explores the qualities of dulzura (sweetness) and amargura (bitterness) as key terms of value in the moral economy of Uitoto horticulturalists—experts in the management of bitter manioc (manihot escualenta) and bitter feelings alike.     

Nonformal education for improving educational outcomes for street children and street youth in developing countries: A systematic review

Tens of millions of children and youth (up to 24 years of age) live and work on the streets of developing countries. Most of them are forced to leave formal education. As a potential solution, nonformal education (NFE) interventions have spread worldwide. However, no previous attempt has been made to address the state of evidence regarding effectiveness studies of NFE for street children and youth. This review addresses this gap by conducting the first systematic review concerning the effectiveness of NFE for improving educational outcomes for street children and street youth. The search was conducted in 35 structured electronic databases and numerous organizations and experts were also contacted. The screening of 9,271 titles resulted in the identification of zero prospective effectiveness studies with a counterfactual. Lessons are drawn from the highest quality excluded studies to inform future evaluations that seek to address this knowledge gap. Key Practitioner Message: ● Practitioners should implement comparable intake and monitoring assessments to track changes consistently over time; ● Programs informed by critical pedagogy and empowerment‐based approaches may improve behavioral outcomes; ● Programs that work with street children and street youth should clarify how they identify their target population.     

Best Practice Guidelines on Publishing Ethics: A Publisher's Perspective, 2nd Edition*

Wiley has updated its publishing ethics guidelines, first published in 2006. The new guidelines provide guidance, resources, and practical advice on ethical concerns that arise in academic publishing for editors, authors, and researchers, among other audiences. New guidance is also included on whistle blowers, animal research, clinical research, and clinical trial registration, addressing cultural differences, human rights, and confidentiality. The guidelines are uniquely interdisciplinary, and were reviewed by 24 editors and experts chosen from the wide range of communities that Wiley serves. They are also published in Advanced Materials, Headache, Annals of the New York Academy of Sciences, International Journal of Clinical Practice, and on the website http://exchanges.wiley.com/ethicsguidelines .     

Spiritual Histories and Native Americans: A Mixed Method Validation Study

ABSTRACT

Although spirituality plays a central role in health and wellness for many Native Americans, surprisingly few spiritual assessment tools have been validated with this population. This mixed-method study modifies an existing spiritual assessment tool—spiritual histories—that may be particularly congruent with Native American culture. Using a sample of recognized experts in Native culture (N = 50), the study identifies: (a) the degree of cultural consistency, strengths, and limitations of the tool, conceptually, and (b) a culturally valid question protocol to operationalize the concept for use with Native clients. The findings are discussed in light of recent accrediting requirements mandating the administration of spiritual assessments in numerous settings and suggestions are provided to administer the assessment in a culturally competent manner.     

Effects of Individualized Education Programs on Cognitive Outcomes for Children with Disabilities in Head Start Programs

ABSTRACT

This study investigated the impact of Head Start, disability status, and receipt of an Individualized Education Program (IEP) on early language, literacy, and mathematics skills for low-income children with language, cognitive, emotional/behavioral, sensory, and physical disabilities. Secondary analysis of data was performed on a sample of children with disabilities (N = 570) drawn from the Head Start Impact Study, a nationally representative study of approximately 5,000 children randomly assigned to Head Start or non–Head Start programs. Results of ordinary least squares regression analyses indicated that Head Start participation enhanced outcomes for children with multiple disabilities; language, literacy, and mathematics skills at age 5–6 years were higher for these children compared to non–Head Start attendees. Head Start children with disabilities were more likely to have an IEP, though IEP receipt was associated with lower language, literacy, and mathematics scores among all children. There is a need to ensure that Head Start, and programs similar to Head Start, are more widely available to provide comprehensive, quality early childhood programming to children with cumulative risk factors (low income, multiple disabilities). Future research should clarify why IEP receipt was associated with poorer cognitive outcomes.     

Comparison of the Polar Decision Rules for Various Types of Distributions

We focus on the dichotomous choice model, which goes back as far as Condorcet (1785; Essai sur l'application de l'analyse a la probabilité des décisions rendues a la pluralité des voix, Paris). A group of experts is required to select one of two alternatives, of which exactly one is regarded as correct. The alternatives may be related to a wide variety of areas. A decision rule translates the individual opinions of the members into a group decision. A decision rule is optimal if it maximizes the probability of the group to make a correct choice. In this paper we assume the correctness probabilities of the experts to be independent random variables, selected from some given distribution. Moreover, the ranking of the members in the team is (at least partly) known. Thus, one can follow rules based on this ranking. The polar different rules are the expert and the majority rules. The probabilities of the two polar rules being optimal were compared in a series of papers. The main purpose of this paper is to outline the results, providing exact formulas or estimates for these probabilities. We consider a variety of distributions and show that for all of these distributions the asymptotic behaviour of the probabilities of the two polar rules follows the same patterns.     

Learning from others: conditioning versus averaging

How should we revise our beliefs in response to the expressed probabilistic opinions of experts on some proposition when these experts are in disagreement? In this paper I examine the suggestion that in such circumstances we should adopt a linear average of the experts’ opinions and consider whether such a belief revision policy is compatible with Bayesian conditionalisation. By looking at situations in which full or partial deference to the expressed opinions of others is required by Bayesianism I show that only in trivial circumstances are the requirements imposed by linear averaging compatible with it.     

Expertise: Between the Scylla of certainty and the new age charybdis

Scientists should be seen as expert advisors rather than producers of certainty. The progress of scientific controversies shows both why this is the case, and why it is so little understood. Those very close to the research front are aware of the many points at which experimental procedures and theoretical arguments could be wrong. They understand the ‘expert’ quality of their conclusions. Those further distanced from the research front are unaware of the immense complexity of the research and, consequently, are more certain of the truth of science.

That scientific results are less conclusive than they are generally taken to be does not mean that ‘anything goes’. There is a difference between experts and non‐experts; it is just that experts should not be expected to agree. Scientific controversies rarely end; it is usual to find equally well qualified experts on both sides of a scientific debate long after a view has been reached throughout the larger part of the scientific community.     

Psychological distress among women who were sexually abused as children

One of the aims of the study was to investigate how participants in self‐help groups (SHG) for women (n = 87) who had been sexually abused in childhood rated their mental health and to what extent they were at risk of developing posttraumatic stress disorder (PTSD). A further aim was to investigate the relationship between the ratings of mental health, occurrence of PTSD, women's interpersonal relationships, reasons for participating in an SHG and characteristics of the childhood sexual abuse (CSA). The participants completed questionnaires regarding their personal relationships, reasons for joining a group, abuse characteristics, mental health (Symptom Checklist‐90‐Revised) and PTSD (Impact of Event Scale‐Revised). The women showed poor mental health, and more than half of them were at risk of developing PTSD. Lack of social support and feelings of shame correlated with poor mental health, whereas guilt did not. Relationships with female friends had a positive association. Further research is needed to determine whether participating in an SHG could provide adequate social support and reduce feelings of shame, thereby contributing to the healing process in the aftermath of CSA. Key Practitioner Message: ? Child abuse is a significant component of the global burden of disease; ? Both social workers and public health care providers meet sexually abused girls and it is important that they have knowledge about the subject; ? An important clinical implication for adequate treatment would be to assess and recognise childhood sexual abuse and to link diagnosis to trauma.     

The essential ranking of decision rules in small panels of experts

For small panels of experts (e.g., boards of managers, courts, specialized committees), n 5, this paper provides an algorithm for ranking the seven efficient and commonly used weighted majority rules by their respective performance. These rules are terned efficient since they constitute the set of potentially optimal decision rules in uncertain, symmetric, pairwise choice situations. The main contribution of this study is the discovery of an essential ordering of six of these rules which entails that the set of possible ranking of the seven rules is almost single peaked.The essential ordering significantly reduces the number of possible rankings of the rules, and thus, simplifies the development of the ranking algorithm. The essential ordering has important applications when the available information on the experts' decisional skills is incomplete.     

Partial information on decisional competences and the desirability of the expert rule in uncertain dichotomous choice situations

The paper analyzes the expert resolution problem by employing extended versions of the uncertain dichotomous choice model. The main purpose of this study is to illustrate how the analysis of optimal decision rules can be carried out while dispensing with the common restrictive assumption of full information regarding individual decisional competences. In contrast to most previous studies in this field we here evaluate the expert rule under alternative assumptions regarding the available partial information on judgmental competences rather than compare it in an ad hoc manner to some common alternative rules, such as simple majority rule. A fuller optimality analysis allowing the evaluation of all relevant decision rules, and not merely the expert rule, is attempted for a five-member panel of experts assuming a uniform distribution of individual competences. For three-member groups the optimality issue is resolved by assuming no information on individual competences and interpreting the expert rule as an even-chance lottery on skills.     

An Accurate Image of the World

Editorial secrets are kept from rivals, but I hope that I will be forgiven if I betray one of them. Recently, at weekly staff meetings at Izvestiia, the post-mortem critic—although he declare himself a Cicero—becomes boring whenever his critique turns to the foreign news pages. The normal daily edition of Izvestiia carries four pages on domestic topics and two on foreign ones. However, the critic as a rule devotes not half as much but one-tenth the time to the latter, while avoiding any incisive analysis. Sometimes he receives for his routine patter a reprimand (also routine) from the leader of the staff meeting. Sometimes the international experts insult their colleagues right there in the hall. Next Wednesday, history will nonetheless be repeated—a detailed analysis of domestic material with special emphasis on the urgent and pivotal, and a minimum of attention to the fourth and fifth pages. Even in conversations with young colleagues—who now have greater opportunity, happily, to demonstrate their inclinations and civic fervor—one senses, through their attitude of proper deference to a superior, the condescension of a person who is doing a costly and even risky thing toward one who, as before, is occupied with what seems to be ritual exposés.     

The Children's Delphi: considerations for developing a programme for promoting children's self‐concept and well‐being

This study is premised on the notion that intervention programmes aimed at improving children's well‐being should be inclusive of activities which promote children's self‐concept. Using a child participation framework, this study aimed to explore children's perceptions of the nature and content of intervention programmes aimed at improving children's self‐concept within two impoverished communities of the Western Cape, South Africa. The Delphi technique was followed with a group of 10 children between the ages of 10 and 12 years who were considered to be knowledgeable experts and authorities on matters affecting their lives and well‐being of children. They suggested that intervention programmes include a focus on safety, the provision of social support, the creation of opportunities for learning and for play and the provision of basic material needs.