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Biomedical subjects

Laura Weiss Roberts

Publications and source records attributed to Laura Weiss Roberts.

At least 19 recordsLinked to original sources

Exploring differences in caseloads of rural and urban healthcare providers in Alaska and New Mexico.

OBJECTIVES: Although it is commonly accepted that rural healthcare providers face demands that are both qualitatively and quantitatively different from those faced by urban providers, this conclusion is based largely on data from healthcare consumers and relies on qualitative work with small sample sizes, surveys with small sample sizes, theoretical reviews and anecdotal reports. To enhance our knowledge of the demands faced by rural healthcare providers and to gain the perspectives of healthcare providers themselves, this study explored the caseloads of rural providers compared with those of urban providers. METHOD: An extensive survey of over 1500 licensed clinicians across eight physical and behavioural healthcare provider groups in Alaska and New Mexico was undertaken to explore differences in caseloads based on community size (small rural, rural, small urban, urban), state (Alaska, New Mexico) and discipline (health, behavioural). RESULTS: Findings indicated numerous caseload differences between community sizes that were consistent across both states, with complex case presentations being described most commonly by small rural and rural providers. Substance abuse, alcohol use, cultural diversity, economic disadvantage and age diversity were issues faced more often by providers in rural and small rural communities than by providers in small urban and urban communities. Rural, but not small rural, providers faced challenges around work with prisoners and individuals needing involuntary hospitalization. Although some state and discipline differences were noted, the most important findings were based on community size. CONCLUSIONS: The findings of this study have important implications for provider preparation and training, future research, tailored resource allocation, public health policy, and efforts to prevent 'burnout' of rural providers.

Adolescent↗

Rural-urban health care provider disparities in Alaska and New Mexico.

Compared to their urban counterparts, rural residents face numerous disparities in obtaining health care, including limited access to care providers. We assessed disparities in provider availability in rural versus urban Alaska and New Mexico, with emphasis on professionals likely to provide mental health care. Using lists of licenses, we categorized physical and mental health care providers into rural versus urban and calculated rural versus urban disparity ratios. Rural residents had significantly less access to health care providers and discrepancies grew with level of required provider education and specialization. Addressing disparities via creative strategies is crucial to improving rural care delivery.

Alaska↗

Barriers to healthcare as reported by rural and urban interprofessional providers.

The research literature is replete with reports of barriers to care perceived by rural patients seeking healthcare. Less often reported are barriers perceived by the rural healthcare providers themselves. The current study is an extensive survey of over 1,500 healthcare providers randomly selected from two US states with large rural populations, Alaska and New Mexico. Barriers consistently identified across rural and urban regions by all healthcare professionals were Patient Complexity, Resource Limitations, Service Access, Training Constraints, and Patient Avoidance of Care. Findings confirmed that rural areas, however, struggle more with healthcare barriers than urban and small urban areas, especially as related to Resource Limitations, Confidentiality Limitations, Overlapping Roles, Provider Travel, Service Access, and Training Constraints. Almost consistently, the smaller a provider's practice community, the greater the reports of barriers, with the most severe barriers reported in small rural communities.

Alaska↗

An inverse relationship between perceived harm and participation willingness in schizophrenia research protocols.

OBJECTIVE: This study attempted to clarify how people with schizophrenia evaluate the potential harm associated with various research-related procedures and how these assessments relate to participation willingness. METHOD: The authors conducted a semistructured interview among participants with schizophrenia. RESULTS: Sixty participants with schizophrenia rated four procedures as harmful (e.g., symptom induction), five procedures as moderately harmful (e.g., being given a placebo), and six procedures as not harmful (e.g., undergoing a physical examination). Rated willingness to participate was inversely related to the participants' perceptions of harmfulness for all procedures. CONCLUSIONS: In this study, people living with schizophrenia perceived different research procedures as posing different levels of possible harm. Potential harm appears to be an important consideration in protocol enrollment decisions. This work reaffirms the value of clarifying the strengths of seriously ill people who may choose to participate in research.

Adult↗

Ethical philanthropy in academic psychiatry.

OBJECTIVE: From an ethical perspective, psychiatrists cannot accept gifts of significant monetary value from their patients. This guideline raises important questions regarding institutional practices related to gift-giving in academic psychiatry. The first aim of this article is to explain the ethical tensions and shared ethical commitments of the professions of psychiatry and philanthropy. The second aim is to outline a series of steps that may be undertaken to assure ethical philanthropic practices within an institution, including the establishment of a committed advisory workgroup and the creation of ground rules and safeguards for gift-giving. Each situation should be evaluated for "ethical risk," and specific measures to safeguard donors should be considered. METHOD: The author outlines methods to manage, minimize, or eliminate conflict of interest issues, including identification and disclosure of conflicting interests, role separation, goal clarification, confidentiality protections, proper timing, and ongoing oversight. Three case illustrations are provided and discussed. RESULTS: The process of institutional engagement, dialogue, and shared problem-solving is especially important. A shared, constructive ethic will be attained only if leaders and diverse stakeholders communicate the value of the new approach through their words, expectations, and actions. CONCLUSIONS: Through these efforts, greater attention will be given to the concerns of people with mental illness, and academic institutions may be better able to fulfill their responsibilities to this important but neglected population now and in the future.

Academic Medical Centers↗

Assessments by patients with schizophrenia and psychiatrists of relative risk of research procedures.

OBJECTIVE: Schizophrenia studies involve diverse procedures with varying levels of risk. Federal regulations indicate that oversight of these protocols entails assessment of risk in relation to the risks encountered in everyday life. No data exist on comparing assessments of people with schizophrenia with those of psychiatrists regarding research procedure risks in relation to the usual risks of living with schizophrenia. METHODS: Structured interviews were given to 43 people with schizophrenia and a parallel written survey was given to 68 psychiatrists to compare assessments of relative risk. Twelve research procedures were rated to compare the risk of the procedure with everyday risks. Possible scores range from 1, much less risk, to 3, about the same, to 5, much more risk. RESULTS: People with schizophrenia and psychiatrists viewed filling out questionnaires, drawing a tube of blood, drawing a tube of blood for a genetic test, and having X-rays of the head as being less risky than usual daily risks. Psychiatrists saw showing a word or picture that is upsetting as being less risky than usual daily risks. In contrast, patients saw having a spinal tap, getting a new experimental medication, getting a medication that causes temporary symptoms of schizophrenia, and stopping usual medications for two weeks as being significantly more risky than usual daily risks, but psychiatrists rated only stopping usual medications for two weeks as being more risky than usual daily risks. CONCLUSIONS: Substantial congruence exists between patients and psychiatrists regarding their views of research procedure risks. Further work is needed to determine how these assessments may be used in evaluating protocols.

Adult↗

Survey return rates as a function of priority versus first-class mailing.

Prior research indicates survey procedures that signal significance and individualized mailings have higher response rates. Thus, it was hypothesized that surveys delivered via Priority mail would result in higher return rates than surveys delivered via First-Class. 260 surveys were sent to individuals randomly selected from lists of licensed physical and behavioral healthcare providers in Alaska and New Mexico. Half of the selected individuals were assigned randomly to receive mailings using Priority mail, the other half received First-Class mailings. Return rate was 39% for First-Class and 35% for Priority. Z tests of proportion indicated no statistically significant differences between methods. Given increased costs with no resultant increase in response rate, sending surveys to potential participants via Priority mail does not appear warranted.

Adult↗

Perspectives on medical research involving men in schizophrenia and HIV-related protocols.

Ethical issues in research on serious physical and mental illnesses have received great attention, and yet little is known about how the perspectives of clinical research participants with different diagnoses may compare. We conducted a preliminary study to examine the attitudes of men enrolled in schizophrenia-related protocols and in HIV-related protocols regarding the importance of medical research, key aspects of research participation, and the acceptability of research involvement by various groups. A total of 33 men enrolled in schizophrenia protocols and 15 men enrolled in HIV-related protocols volunteered for our study. Respondents affirmed the importance of medical research and endorsed many positive things about participation. Autonomy and altruism were identified as motivators for research involvement. Participation by diverse groups was seen as acceptable. Respondents expressed comfort and little stress with the interview process. Men in different diagnostic groups largely saw the issues the same. Our findings thus suggest that people with schizophrenia and HIV/AIDS who are enrolled in protocols may share a number of core attitudes or beliefs related to ethical aspects of research participation. Further study is needed to explore how research involvement may influence perspectives and whether differences in views exist across people with diverse physical and mental illnesses.

Acquired Immunodeficiency Syndrome↗

Views of people with schizophrenia regarding aspects of research: study size and funding sources.

Serious mental illness research poses many ethical questions, including important considerations pertaining to how large a study is and its source of funding. Little is known about how people with schizophrenia understand these ethical considerations and whether these factors may influence their decisions to participate in research. Structured interviews were conducted with 60 people with schizophrenia. Participants were asked about levels of suffering and the importance of research for healthy people and for people with serious illnesses. Participants also rated helpfulness and harmfulness to society, and their likelihood of participating in studies involving 10 subjects, 1000 subjects, 1 research institution, or 10 research institutions and in studies funded by various organizations. Participants viewed all types of research positively and indicated willingness to volunteer. Likelihood of participating in research was correlated with perceived helpfulness to society and inversely correlated with perceived harmfulness. Research by pharmaceutical companies was seen as less helpful to society than research sponsored by federal or state government or by private foundations. Larger studies conducted at multiple sites were seen as more helpful to society than smaller studies or those at single sites. Larger studies conducted at single sites, however, were seen as more harmful. Respondents endorsed a positive view of medical research and expressed a willingness to participate in projects of all scales with diverse funding sources. The pattern of responses suggests the capacity for a nuanced understanding of ethically salient aspects of medical research by individuals with schizophrenia.

Adult↗

Emerging empirical evidence on the ethics of schizophrenia research.

Many challenging ethical questions come with the scientific efforts to understand the nature and treatment of schizophrenia. The empirical study of ethical aspects of schizophrenia research has sought to clarify and resolve many of these questions. In this article we provide an overview of the existing data-based literature on schizophrenia research ethics and outline directions for future inquiry. We examine 5 broad categories of inquiry into the ethics of schizophrenia research: (1) Scientific designs (eg, placebo-controlled studies and medication-free intervals, prodromal and high-risk research, and genetics research); (2) informed consent and decision-making capacity, including assessment of decisional abilities, as well as intervention studies; (3) understanding and perceptions of risk and benefit (including the therapeutic misconception); (4) influences on research participation (including voluntarism, altruism, and other motivations); and (5) key participant safeguards, such as protocol review and participant advocates. We discuss how empirical work in each of these areas answers certain questions and raises new ones. Finally, we highlight important gaps in our understanding of ethically relevant aspects of schizophrenia research and offer a specific research agenda for empirical ethics.

Biomedical Research↗

Do research procedures pose relatively greater risk for healthy persons than for persons with schizophrenia?

Federal regulations governing human research suggest that potential harms and discomforts of research be considered in relation to the risks normally encountered in daily life or in routine examinations. No data regarding relative risks of research exist for persons with schizophrenia. We surveyed psychiatrists (N = 68) to assess their perceptions of the risk associated with 12 research procedures in 2 categories, that is, evaluation- and intervention-type procedures. Psychiatrists were asked to rate "risks compared to usual daily risks" for people with schizophrenia and, separately, for healthy people. For healthy research volunteers, psychiatrists rated 2 of 5 evaluation procedures and none of the intervention procedures as posing fewer risks than daily life. One evaluation procedure and 2 intervention procedures were rated as similar to daily risks for healthy research volunteers. For volunteers with schizophrenia, psychiatrists rated 4 of the 5 evaluation procedures and 1 intervention procedure as conferring less risk than everyday life. For 1 of 5 evaluation procedures and 5 of 7 intervention procedures, the risks associated with the procedures were centered close to the benchmark for those faced every day by persons with schizophrenia. Psychiatrists in this study viewed research procedure risks as closer to the daily risks encountered by persons with schizophrenia than by healthy persons. Because federal regulations benchmark research studies as "minimal risk" if they are analogous to the usual risks of everyday life, this finding may have important implications for the evaluation of psychiatric protocols.

Adult↗

Patient requests and provider suggestions for alternative treatments as reported by rural and urban care providers.

OBJECTIVES: Explored the relationship between different types of care providers' willingness to suggest alternative and complementary treatments (CAM), patients' requests for CAM, and provider perceptions about CAM as barriers to effective healthcare. DESIGN: Large survey. SETTING: Alaska and New Mexico. MAIN MEASURES: Survey responses from 1528 physical and behavioral healthcare providers. RESULTS: Over 97% of providers suggested CAM; over 97% reported patients asked for CAM. Providers were more likely to suggest CAM than perceived CAM as a barrier to care. Healthcare providers who were female, from small rural areas, or specializing in behavioral healthcare were more likely to suggest CAM and less likely to perceive CAM as a barrier. Patients of physical healthcare providers asked for CAM more often than patients of behavioral healthcare providers, yet physical care providers suggested CAM less frequently. CONCLUSIONS: Healthcare providers of all disciplines, regions, and gender are sensitive to patients' desire for CAM and do not perceive CAM as a barrier to care.

Alaska↗

Financial compensation to adolescents for participation in biomedical research: adolescent and parent perspectives in seven studies.

OBJECTIVE: To examine the impact of financial compensation on pediatric asthma research participation decision-making and determine whether perceptions of fair compensation differed for parents and adolescents, lower and higher income participants, and compensation-informed and uninformed participants in minimal and above minimal risk research. STUDY DESIGN: Adolescents (n = 36) with asthma and their parents reviewed 7 pediatric asthma research protocols, decided whether they would choose to participate, and provided estimates of "fair" compensation for their participation. Chi-square, analysis of variance, and analysis of covariance were used to determine the affects of compensation on participation and whether various respondents differed in the perceptions of fair compensation. RESULTS: Financial compensation did not affect participation decisions. Estimates of fair compensation were lower for adolescents, lower income respondents, and participants who were naive about potential compensation. Fair compensation estimates were higher than actual compensation for minimal risk studies and lower for above minimal risk studies. CONCLUSIONS: Financial compensation may be a minor consideration in pediatric research participation decision-making. Still, differences in how pediatric researchers and their prospective participants judge fair compensation create the potential for undue influence. Pediatric researchers should use caution when determining a reasonable financial compensation for research participation.

Adolescent↗

Perspectives on use and protection of genetic information in work settings: results of a preliminary study.

The societal use of genetic information raises ethical concerns, and the views of working persons regarding genetic information have received little attention. We performed an empirical project to characterize perspectives of 63 employees at two sites who expressed strong interest in learning about and protecting their personal genetic information. Genetic data were seen as more sensitive than other health data, and disclosure of genetic susceptibility was perceived as having negative consequences. This study suggests the value of exploring the perspectives of key stakeholders most directly affected by genetic applications across diverse societal settings.

Adult↗

Emerging findings in ethics of schizophrenia research.

PURPOSE OF REVIEW: We review recent publications pertaining to six topics: investigators, professional integrity, and sources of potential bias; scientific designs; protocol safeguards; influences on research participation decisions and perceptions of risk; informed consent--decision-making capacity, appreciation and the therapeutic misconception, and voluntarism; and informed consent--intervention studies. RECENT FINDINGS: Little empirical work has been conducted on investigator training and potential conflicts of interest. Numerous conceptual pieces have tackled controversial issues related to study designs, with the initial focal point being the ethics of placebo-controlled studies; only a handful of reports, however, have empirically addressed these topics. Emerging findings pertinent to protocol safeguards in schizophrenia research suggest general support by individuals with schizophrenia for a variety of safeguards. Recent work on influences on participation decisions suggests that people with schizophrenia use fundamentally similar considerations as medically ill people and healthy comparison participants--a combination of personal and altruistic motives. Much of the data-based literature has focused on informed consent. We highlight studies indicating that patients living with schizophrenia show heterogeneity in consent-related abilities but may possess key strengths in the research situation, not simply greater vulnerability as suggested in the historical literature. Furthermore, consent-related abilities appear to be enhanced with educational interventions. SUMMARY: Empirical studies focusing on a variety of ethically relevant domains in schizophrenia research are needed. Future studies should incorporate quantitative and qualitative methods, integrate perspectives of stakeholders, and investigate the effects and appropriateness of current protocol safeguards.

Journal Article↗

Teaching medical students to discern ethical problems in human clinical research studies.

PURPOSE: Investigators and institutional review boards are entrusted with ensuring the conduct of ethically sound human studies. Assessing ethical aspects of research protocols is a key skill in fulfilling this duty, yet no empirically validated method exists for preparing professionals to attain this skill. METHOD: The authors performed a randomized controlled educational intervention, comparing a criteria-based learning method, a clinical-research- and experience-based learning method, and a control group. All 300 medical students enrolled at the University of New Mexico School of Medicine in 2001 were invited to participate. After a single half-hour educational session, a written posttest of ability to detect ethical problems in hypothetical protocol vignettes was administered. The authors analyzed responses to ten protocol vignettes that had been evaluated independently by experts. For each vignette, a global assessment of the perceived significance of ethical problems and the identification of specific ethical problems were evaluated. RESULTS: Eighty-three medical students (27%) volunteered: 50 (60%) were women and 55 (66%) were first- and second-year students. On global assessments, the criteria-focused group perceived ethical problems as more significant than did the other two groups (p < .02). Students in the criteria-focused group were better able than students in the control group (p < .03) to discern specific ethical problems, more closely resembling expert assessments. Unexpectedly, the group focused on clinical research participants identified fewer problems than did the control group (p < .05). CONCLUSIONS: The criteria-focused intervention produced enhanced ethical evaluation skills. This work supports the potential value of empirically derived methods for preparing professionals to discern ethical aspects of human studies.

Adult↗