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Research Participants (research + participant)
Selected AbstractsEfficacy of interpersonal therapy-group format adapted to post-traumatic stress disorder: an open-label add-on trialDEPRESSION AND ANXIETY, Issue 1 2010Rosaly F.B. Campanini MSc. Abstract Background: Post-traumatic stress disorder (PTSD) is a highly prevalent condition, yet available treatments demonstrate only modest efficacy. Exposure therapies, considered by many to be the "gold-standard" therapy for PTSD, are poorly tolerated by many patients and show high attrition. We evaluated interpersonal therapy, in a group format, adapted to PTSD (IPT-G PTSD), as an adjunctive treatment for patients who failed to respond to conventional psychopharmacological treatment. Methods: Research participants included 40 patients who sought treatment through a program on violence in the department of psychiatry of Federal University of São Paulo (UNIFESP). They had received conventional psychopharmacological treatment for at least 12 weeks and failed to have an adequate clinical response. After signing an informed consent, approved earlier by the UNIFESP Ethics Review Board, they received a semi-structured diagnostic interview (SCID-I), administered by a trained mental health worker, to confirm the presence of a PTSD diagnosis according to DSM-IV criteria. Other instruments were administered, and patients completed out self-report instruments at baseline, and endpoint to evaluate clinical outcomes. Results: Thirty-three patients completed the trial, but all had at least one second outcome evaluation. There were significant improvements on all measures, with large effect sizes. Conclusions: IPT-G PTSD was effective not only in decreasing symptoms of PTSD, but also in decreasing symptoms of anxiety and depression. It led to significant improvements in social adjustment and quality of life. It was well tolerated and there were few dropouts. Our results are very preliminary; they need further confirmation through randomized controlled clinical trials. Depression and Anxiety, 2010. © 2009 Wiley-Liss, Inc. [source] ,A Story to Tell': learning from the life-stories of older people with intellectual disabilities in IrelandBRITISH JOURNAL OF LEARNING DISABILITIES, Issue 4 2009Carol Hamilton Accessible summary ,,Older people with intellectual disabilities have been telling their life-stories in Ireland. ,,People remember being taken away from their family and community. People talk about sad memories of times in institutions. ,,People talk about the kindness of friends and family. ,,These stories tell staff that older people want to talk about their past and need help to do this. Doing life-story work will help staff to find out what older people who are in services in Ireland need to make their lives meaningful and comfortable. Summary This article draws on life-stories told by older people with intellectual disabilities for a research study in the Republic of Ireland. Research participants recalled their experiences of confinement, coercion and exclusion that resulted from their being labelled as having intellectual disabilities. Participants also recalled the positive interactions with workers and family members that sustained them during these difficult times. Extracts from these narratives show how past medical and social processes interlinked to classify members of this group as ,deficient' or ,lacking' in some way. Life-stories collected in this project illustrate the value of a narrative approach to exploring how services might begin to enhance the quality of support currently provided to older people with intellectual disabilities. However, life-story work in a service setting is far from straightforward, and support is needed for staff involved in this process. [source] Managing Incidental Findings in Human Subjects Research: Analysis and RecommendationsTHE JOURNAL OF LAW, MEDICINE & ETHICS, Issue 2 2008Susan M. Wolf No consensus yet exists on how to handle incidental fnd-ings (IFs) in human subjects research. Yet empirical studies document IFs in a wide range of research studies, where IFs are fndings beyond the aims of the study that are of potential health or reproductive importance to the individual research participant. This paper reports recommendations of a two-year project group funded by NIH to study how to manage IFs in genetic and genomic research, as well as imaging research. We conclude that researchers have an obligation to address the possibility of discovering IFs in their protocol and communications with the IRB, and in their consent forms and communications with research participants. Researchers should establish a pathway for handling IFs and communicate that to the IRB and research participants. We recommend a pathway and categorize IFs into those that must be disclosed to research participants, those that may be disclosed, and those that should not be disclosed. [source] Assessing Qualitative Television Audience Research: Incorporating Feminist and Anthropological Theoretical InnovationCOMMUNICATION THEORY, Issue 4 2000Amanda D. Lotz During the past 20 years qualitative audience researchers have produced respected theory and applied work in their studies of media audiences. Derived from roots in traditional anthropology, audience studies use methodologies that reproduce power differentials between researchers and participants. This article considers the application of feminist ethnography to the methodologies used in audience studies by exploring developments in recent anthropological approaches to ethnography. Shifting to a theoretical base incorporating feminist ethnography aids in identifying the power hierarchies between researcher and research participant and theorizes strategies to minimize these power differentials. In sum, this article queries the epistemological premises of current audience research practices and advocates a rethinking of this research based on the contributions of feminist ethnographic theory and other emergent anthropological developments. [source] BENEFITS TO RESEARCH SUBJECTS IN INTERNATIONAL TRIALS: DO THEY REDUCE EXPLOITATION OR INCREASE UNDUE INDUCEMENT?DEVELOPING WORLD BIOETHICS, Issue 3 2008ANGELA BALLANTYNE ABSTRACT There is an alleged tension between undue inducement and exploitation in research trials. This paper considers claims that increasing the benefits to research subjects enrolled in international, externally-sponsored clinical trials should be avoided on the grounds that it may result in the undue inducement of research subjects. It proceeds from the premise that there are good grounds for thinking that, at least some, international research sponsors exploit trial participants because they do not provide the research population with a fair share of the benefits of research. This provides a prima facie argument for increasing the benefits for research participants. Concern over undue inducement is a legitimate moral concern; however, if this concern is to prevent research populations from receiving their fair share of benefits from research there must be sufficient evidence that these benefits will unduly influence patients' decision-making regarding trial participation. This article contributes to the debate about exploitation versus undue inducement by introducing an analysis of the available empirical research into research participants' motivations and the influence of payments on research subjects' behaviour and risk assessment. Admittedly, the available research in this field is limited, but the research that has been conducted suggests that financial rewards do not distort research subjects' behaviour or blind them to the risks involved with research. Therefore, I conclude that research sponsors should prioritise the prevention of exploitation in international research by providing greater benefits to research participants. [source] Corticolimbic dysregulation and chronic methamphetamine abuseADDICTION, Issue 2007Kate Baicy ABSTRACT Aims This review aims to present and interpret evidence that methamphetamine dependence is associated with disorder of brain function that is required for top-down control of behavior. Approach Presented here are findings from brain imaging studies of human research participants with histories of chronic methamphetamine abuse in the context of functional consequences and implications for treatment of their dependence on methamphetamine. Findings Brain imaging studies have revealed differences in the brains of research participants who have used methamphetamine chronically and then abstained from taking the drug, compared with healthy control subjects. These abnormalities are prominent in cortical and limbic systems, and include deficits in markers of dopaminergic and serotonergic neurotransmitter systems, differences in glucose metabolism and deficits in gray matter. These abnormalities accompany cognitive deficits, including evidence of impaired inhibitory control. Conclusion Cortical deficits in abstinent methamphetamine abusers can affect a wide range of functions that can be important for success in maintaining drug abstinence. These include but are not limited to modulation of responses to environmental stimuli as well as internal triggers that can lead to craving and relapse. Potential therapies may combine behavioral approaches with medications that can improve cognitive control. [source] Rewards and Challenges of Using Ethnography in Family ResearchFAMILY & CONSUMER SCIENCES RESEARCH JOURNAL, Issue 1 2007Lara Descartes Ethnography offers many potential benefits to family researchers, such as providing on-the-ground knowledge of the contexts that affect family functioning and processes. This article describes ethnographic methods and reviews how they have been and may be used in family research, whether alone or in combination with more traditional approaches. The author's fieldwork experiences are used to discuss some of the rewards and challenges of ethnography. The ways in which issues of personal identity and power may impact the relationship between the ethnographer and research participants are examined. Also discussed are the ways in which contemporary constructions of private and public space and time affect the ethnographic process. The goal of the article is to highlight the value of ethnography to family research and to increase awareness of some of the factors to be considered while planning such work. [source] Improving transfer of mental health care for rural and remote consumers in South AustraliaHEALTH & SOCIAL CARE IN THE COMMUNITY, Issue 2 2009Judy Taylor BA Dip Soc Wk MSW PhD Abstract In Australia, it is commonplace for tertiary mental health care to be provided in large regional centres or metropolitan cities. Rural and remote consumers must be transferred long distances, and this inevitably results in difficulties with the integration of their care between primary and tertiary settings. Because of the need to address these issues, and improve the transfer process, a research project was commissioned by a national government department to be conducted in South Australia. The aim of the project was to document the experiences of mental health consumers travelling from the country to the city for acute care and to make policy recommendations to improve transitions of care. Six purposively sampled case studies were conducted collecting data through semistructured interviews with consumers, country professional and occupational groups and tertiary providers. Data were analysed to produce themes for consumers, and country and tertiary mental healthcare providers. The study found that consumers saw transfer to the city for mental health care as beneficial in spite of the challenges of being transferred over long distances, while being very unwell, and of being separated from family and friends. Country care providers noted that the disjointed nature of the mental health system caused problems with key aspects of transfer of care including transport and information flow, and achieving integration between the primary and tertiary settings. Improving transfer of care involves overcoming the systemic barriers to integration and moving to a primary care-led model of care. The distance consultation and liaison model provided by the Rural and Remote Mental Health Services, the major tertiary provider of services for country consumers, uses a primary care-led approach and was highly regarded by research participants. Extending the use of this model to other primary mental healthcare providers and tertiary facilities will improve transfer of care. [source] Situation awareness and attention allocation measures for quantifying telepresence experiences in teleoperationHUMAN FACTORS AND ERGONOMICS IN MANUFACTURING & SERVICE INDUSTRIES, Issue 1 2004Jennifer M. Riley This study assessed the utility of measures of situation awareness (SA) and attention allocation for quantifying telepresence, the sense of being present at a remote site, in a teleoperation task scenario. Attention and SA have been identified as cognitive constructs potentially underlying telepresence. The motivation for this research was to establish an objective measure of telepresence and investigate the relationship between telepresence and teleoperation performance. Twenty-four research participants performed a virtual ordnance disposal task at varying levels of difficulty (LODs). The task involved locating, identifying, and disposing of virtual land mines in an outdoor environment using a simulated remote-control rover with a robotic arm. Performance, SA, and attention allocation were recorded along with subjective assessments of telepresence. Results demonstrated LOD effects on performance and telepresence. Regression analysis revealed LOD and attention to explain significant portions of the variance in telepresence. Results of the study provide further evidence that telepresence may share a relationship with performance, and that cognitive constructs, such as attention and SA, may serve as alternative, objective measures of telepresence. © 2004 Wiley Periodicals, Inc. Hum Factors Man 14: 51,67, 2004. [source] Association between pacifier use and breast-feeding, sudden infant death syndrome, infection and dental malocclusionINTERNATIONAL JOURNAL OF EVIDENCE BASED HEALTHCARE, Issue 6 2005Ann Callaghan RN RM BNurs(Hons) Executive summary Objective, To critically review all literature related to pacifier use for full-term healthy infants and young children. The specific review questions addressed are: What is the evidence of adverse and/or positive outcomes of pacifier use in infancy and childhood in relation to each of the following subtopics: ,breast-feeding; ,sudden infant death syndrome; ,infection; ,dental malocclusion. Inclusion criteria, Specific criteria were used to determine which studies would be included in the review: (i) the types of participants; (ii) the types of research design; and (iii) the types of outcome measures. To be included a study has to meet all criteria. Types of participants,The participants included in the review were healthy term infants and healthy children up to the age of 16 years. Studies that focused on preterm infants, and infants and young children with serious illness or congenital malformations were excluded. However, some total population studies did include these children. Types of research design, It became evident early in the review process that very few randomised controlled trials had been conducted. A decision was made to include observational epidemiological designs, specifically prospective cohort studies and, in the case of sudden infant death syndrome research, case,control studies. Purely descriptive and cross-sectional studies were excluded, as were qualitative studies and all other forms of evidence. A number of criteria have been proposed to establish causation in the scientific and medical literature. These key criteria were applied in the review process and are described as follows: (i) consistency and unbiasedness of findings; (ii) strength of association; (iii) temporal sequence; (iv) dose,response relationship; (v) specificity; (vi) coherence with biological background and previous knowledge; (vii) biological plausibility; and (viii) experimental evidence. Studies that did not meet the requirement of appropriate temporal sequencing of events and studies that did not present an estimate of the strength of association were not included in the final review. Types of outcome measures,Our specific interest was pacifier use related to: ,breast-feeding; ,sudden infant death syndrome; ,infection; ,dental malocclusion. Studies that examined pacifier use related to procedural pain relief were excluded. Studies that examined the relationship between pacifier use and gastro-oesophageal reflux were also excluded as this information has been recently presented as a systematic review. Search strategy, The review comprised published and unpublished research literature. The search was restricted to reports published in English, Spanish and German. The time period covered research published from January 1960 to October 2003. A protocol developed by New Zealand Health Technology Assessment was used to guide the search process. The search comprised bibliographic databases, citation searching, other evidence-based and guidelines sites, government documents, books and reports, professional websites, national associations, hand search, contacting national/international experts and general internet searching. Assessment of quality, All studies identified during the database search were assessed for relevance to the review based on the information provided in the title, abstract and descriptor/MeSH terms, and a full report was retrieved for all studies that met the inclusion criteria. Studies identified from reference list searches were assessed for relevance based on the study title. Keywords included: dummy, dummies, pacifier(s), soother(s), comforter(s), non-nutritive sucking, infant, child, infant care. Initially, studies were reviewed for inclusion by pairs of principal investigators. Authorship of articles was not concealed from the reviewers. Next, the methodological quality of included articles was assessed independently by groups of three or more principal investigators and clinicians using a checklist. All 20 studies that were accepted met minimum set criteria, but few passed without some methodological concern. Data extraction, To meet the requirements of the Joanna Briggs Institute, reasons for acceptance and non-acceptance at each phase were clearly documented. An assessment protocol and report form was developed for each of the three phases of review. The first form was created to record investigators' evaluations of studies included in the initial review. Those studies that failed to meet strict inclusion criteria were excluded at this point. A second form was designed to facilitate an in-depth critique of epidemiological study methodology. The checklist was pilot tested and adjustments were made before reviewers were trained in its use. When reviewers could not agree on an assessment, it was passed to additional reviewers and discussed until a consensus was reached. At this stage, studies other than cohort, case,control and randomised controlled trials were excluded. Issues of clarification were also addressed at this point. The final phase was that of integration. This phase, undertaken by the principal investigators, was assisted by the production of data extraction tables. Through a process of trial and error, a framework was formulated that adequately summarised the key elements of the studies. This information was tabulated under the following headings: authors/setting, design, exposure/outcome, confounders controlled, analysis and main findings. Results, With regard to the breast-feeding outcome, 10 studies met the inclusion criteria, comprising two randomised controlled trials and eight cohort studies. The research was conducted between 1995 and 2003 in a wide variety of settings involving research participants from diverse socioeconomic and cultural backgrounds. Information regarding exposure and outcome status, and potential confounding factors was obtained from: antenatal and postnatal records; interviews before discharge from obstetric/midwifery care; post-discharge interviews; and post-discharge postal and telephone surveys. Both the level of contact and the frequency of contact with the informant, the child's mother, differed widely. Pacifier use was defined and measured inconsistently, possibly because few studies were initiated expressly to investigate its relationship with breast-feeding. Completeness of follow-up was addressed, but missing data were not uniformly identified and explained. When comparisons were made between participants and non-participants there was some evidence of differential loss and a bias towards families in higher socioeconomic groups. Multivariate analysis was undertaken in the majority of studies, with some including a large number of sociodemographic, obstetric and infant covariates and others including just maternal age and education. As might be expected given the inconsistency of definition and measurement, the relationship between pacifier use and breast-feeding was expressed in many different ways and a meta-analysis was not appropriate. In summary, only one study did not report a negative association between pacifier use and breast-feeding duration or exclusivity. Results indicate an increase in risk for a reduced overall duration of breast-feeding from 20% to almost threefold. The data suggest that very infrequent use may not have any overall negative impact on breast-feeding outcomes. Six sudden infant death syndrome case,control studies met the criteria for inclusion. The research was conducted with information gathered between 1984 and 1999 in Norway, UK, New Zealand, the Netherlands and USA. Exposure information was obtained from a variety of sources including: hospital and antenatal records, death scene investigation, and interview and questionnaire. Information for cases was sought within 2 days after death, within 2,4 weeks after death and in one study between 3 and 11 years after death. Information for controls was sought from as early as 4 days of a nominated sudden infant death syndrome case, to between 1 and 7 weeks from the case date, and again in one study some 3,11 years later. In the majority of the studies case ascertainment was determined by post-mortem. Pacifier use was again defined and measured somewhat inconsistently. All studies controlled for confounding factors by matching and/or using multivariate analysis. Generally, antenatal and postnatal factors, as well as infant care practices, and maternal, family and socioeconomic issues were considered. All five studies reporting multivariate results found significantly fewer sudden infant death syndrome cases used a pacifier compared with controls. That is, pacifier use was associated with a reduced incidence of sudden infant death syndrome. These results indicate that the risk of sudden infant death syndrome for infants who did not use a pacifier in the last or reference sleep was at least twice, and possibly five times, that of infants who did use a pacifier. Three studies reported a moderately sized positive association between pacifier use and a variety of infections. Conversely, one study found no positive association between pacifier use at 15 months of age and a range of infections experienced between the ages of 6 and 18 months. Given the limited number of studies available and the variability of results, no meaningful conclusions could be drawn. Five cohort studies and one case,control study focused on the relationship between pacifier use and dental malocclusion. Not one of these studies reported a measure of association, such as an estimate of relative risk. It was therefore not possible to include these studies in the final review. Implications for practice, It is intended that this review be used as the basis of a ,best practice guideline', to make health professionals aware of the research evidence concerning these health and developmental consequences of pacifier use, because parents need clear information on which they can base child care decisions. With regard to the association between pacifier use and infection and dental malocclusion it was found that, due to the paucity of epidemiological studies, no meaningful conclusion can be drawn. There is clearly a need for more epidemiological research with regard to these two outcomes. The evidence for a relationship between pacifier use and sudden infant death syndrome is consistent, while the exact mechanism of the effect is not well understood. As to breast-feeding, research evidence shows that pacifier use in infancy is associated with a shorter duration and non-exclusivity. It is plausible that pacifier use causes babies to breast-feed less, but a causal relationship has not been irrefutably proven. Because breast-feeding confers an important advantage on all children and the incidence of sudden infant death syndrome is very low, it is recommended that health professionals generally advise parents against pacifier use, while taking into account individual circumstances. [source] Humanism and its critiques in nursing research literatureJOURNAL OF ADVANCED NURSING, Issue 7 2009Michael Traynor Abstract Title.,Humanism and its critiques in nursing research literature. Aim., This paper raises for debate the issue of how humanist ideas have been taken up by nurse scholars, particularly in research literature. Background., Many nurses from the mid-1970s onwards have described and promoted humanism as an appropriate philosophical basis for nursing practice and research. This has been partly in an attempt to sharply differentiate the profession from medicine, and later, managerialism, which have been represented as reductionist and failing to adequately respond to the whole patient. Methods., A summary of definitions of humanism and critiques of humanism in broad philosophical literature is followed by an examination and critique of literature appearing in PubMed published within nursing scholarship from 1976 to 2007 which discusses or promotes humanism in nursing practice or research. Findings., Writers have attempted to enhance the importance of nursing by associating it with the humanistic project of accepting responsibility for realizing our human potential. They have promoted a version of research which is qualitative and centres on understanding individual lifeworlds of research participants because of a strong valuing of the experiences and perspectives of the individual. Much of the literature on this topic describes this humanism in dualistic contrast to medico-scientific reductionism and objectivity. Conclusion., Some of the presentations of humanistic nursing lack rigour and can be seen as doing little more than reproducing professional ideology. Scholars and others in the field of nursing could take the trouble to submit these ideologies to proper scrutiny. [source] Relationship between two anxiety instruments in patients receiving mechanical ventilatory supportJOURNAL OF ADVANCED NURSING, Issue 5 2004Linda L. Chlan PhD RN Aims., The primary aim of this paper is to discuss the relationship between the Visual Analog Scale-Anxiety (VAS-A) and the Spielberger State Anxiety Inventory (SAI) in patients receiving mechanical ventilatory support. A secondary aim is to provide suggestions for the nurse-researcher to consider when selecting an instrument to measure anxiety. Background., Anxiety is a common experience for critically ill patients receiving mechanical ventilatory support. It is a challenge, however, for nurse-researcher to select an instrument to measure anxiety that is valid and reliable yet does not cause great response burden for participants. Visual analog scales may reduce response burden, but lack sound validation in research participants receiving mechanical ventilatory support. Methods., This study used a correlational design. A convenience sample of critically ill patients receiving mechanical ventilatory support (n = 200) were asked to rate their current level of anxiety on the 20-item Spielberger SAI and a 100-mm VAS-A. Results., Eight participants were unable to complete the Spielberger SAI; 100% completed the VAS-A. The two instruments were found to be significantly correlated at r = 0·50; P = 0·01. Conclusion., The VAS-A was found to be less burdensome for research participants than the Spielberger SAI, resulting in no missing data on the VAS-A. Findings from this study provide initial validation of the VAS-A as a justifiable instrument to measure anxiety in patients receiving mechanical ventilatory support. Researchers are advised to balance reliability and validity properties with response burden when selecting an instrument to measure anxiety in patients with communication challenges and energy limitations. [source] An Evaluation of the Implementation of Hand Held Health Records with Adults with Learning Disabilities: A Cluster Randomized Controlled TrialJOURNAL OF APPLIED RESEARCH IN INTELLECTUAL DISABILITIES, Issue 2 2010Vicky Turk Background, Personal health records were implemented with adults with learning disabilities (AWLD) to try to improve their health-care. Materials and Method, Forty GP practices were randomized to the Personal Health Profile (PHP) implementation or control group. Two hundred and one AWLD were interviewed at baseline and 163 followed up after 12 months intervention (PHP group). AWLD and carers of AWLD were employed as research interviewers. AWLD were full research participants. Results, Annual consultation rates in the intervention and control groups at baseline were low (2.3 and 2.6 visits respectively). A slightly greater increase occurred over the year in the intervention group 0.6 (,0.4 to 1.6) visits/year compared with controls. AWLD in PHP group reported more health problems at follow-up 0.9 (0.0 to 1.8). AWLD liked their PHP (92%) but only 63% AWLD and 55% carers reported PHP usage. Carers had high turnover (34%). Conclusions, No significant outcomes were achieved by the intervention. [source] An attachment theory perspective on the proposed matrix modelJOURNAL OF CLINICAL PSYCHOLOGY, Issue 9 2005Hal S. ShoreyArticle first published online: 17 JUN 200 The matrix model (C.R. Snyder & T.R. Elliott, this issue) advocates an increased grounding of clinical psychology graduate students in theory. The matrix model is theory-based in the ways that it advances this goal. Accordingly, evaluating the matrix model from an extant theoretical perspective should shed light on its applicability and utility as an educational framework. The present attachment theory perspective on the matrix model demonstrates that it meets its stated goals in that it possesses adequate (a) breadth in incorporating theory from across subdisciplines in psychology, and (b) depth in how it facilitates conceptualizing clients and research participants at the intrapersonal, interpersonal, and societal levels. The benefits for incorporating the matrix model in clinical psychology graduate programs are discussed. © 2005 Wiley Periodicals, Inc. J Clin Psychol. [source] Race as stigma: positioning the stigmatized as agents, not objectsJOURNAL OF COMMUNITY & APPLIED SOCIAL PSYCHOLOGY, Issue 6 2006Caroline Howarth Abstract Using material from three qualitative studies into the social and psychological consequences of racism, this paper explores the insights gained from conceptualizing race as stigma. Not only does this shed light on the construction and contestation of racism in the lives of the research participants, the material presented raises important issues for a social psychology of stigma more generally. These include an assessment of the embodiment of stigma, the ideological construction of stigma within particular histories, the impact of stigma on identity and the ways in which we collectively contest and resist stigma. While acknowledging how stigma, particularly the stigma of race, acts to deny humanity, agency and liberty, I illustrate how stigma is collectively constructed, institutionalized and resisted in social and political relations. I conclude that a crucial part of the psychology of stigma must be a focus on the possibilities for communities to contest and transform representations and practices that stigmatize; that is, we need to explore the possibilities and conditions for stigmatized communities as agents and not (only) as objects or victims of stigma. Copyright © 2006 John Wiley & Sons, Ltd. [source] Ethnography and the ethics of undertaking research in different mental healthcare settingsJOURNAL OF PSYCHIATRIC & MENTAL HEALTH NURSING, Issue 3 2010H. ALLBUTT rgn ba msc phd Accessible summary ,,We report our experiences of seeking regulatory approval to undertake a qualitative research study using observation and interviews in three different mental healthcare settings. ,,All users of mental health services are classified as ,vulnerable' research participants by UK regulatory research systems. We argue that this is both disempowering to users and also at odds with current health care policy to promote service user involvement in research processes. ,,Access to mental healthcare sites was difficult in spite of agreement by senior area managers. Front-line team leaders acted as gatekeepers to influence which service users could be approached to take part in the study. This type of intervention may bias research samples and dilute the knowledge claims researchers can make from research undertaken in practice settings. Abstract This paper draws on our experiences of seeking research ethics and management approval for a 1-year ethnographic research study in three mental health settings. We argue that the increased bureaucratization of research governance in the UK is paternalistic and unfit for qualitative, non-interventionist study designs. The classification of all mental health services users as ,vulnerable' is also disempowering and contrary to government calls to increase user involvement in research processes. We relate our difficulties in accessing National Health Service sites to undertake our study despite endorsement by senior managers. The current research ethics system reinforces the gatekeeping role of front-line National Health Service staff but this may work to bias samples in favour of ,amenable' service users and exclude others from having their views and experiences represented in studies over the long-term. [source] Recommendations on Use of Biomarkers in Alcoholism Treatment TrialsALCOHOLISM, Issue 10 2003John P. Allen Background: Biochemical markers of heavy drinking are playing increasingly prominent roles in alcohol treatment efficacy studies, especially in those designed to evaluate medications. Among these roles are serving as inclusion or exclusion criteria for research participants, corroboration of self-report of drinking status, assessment of the safety of the agent being evaluated, and determination of treatment outcome. Methods: Recent alcohol medication development trials that included biomarker information were reviewed and critiqued from the perspectives of how biomarker measures were used and how findings on them were reported. Results: Although generally the application of biomarkers as inclusion criteria is not recommended, they may aid in exclusion of potential subjects (e.g., elevated liver function measures in trials of agents that could result in liver damage). Biomarkers are most commonly used as indicators of outcome, usually serving as secondary outcome variables. The relationship of outcome findings on biomarker and self-report measures is positive, but only moderate. As used to date, biomarkers of drinking tend to be less sensitive than well-standardized and properly administered self-report measures. Nevertheless, they do provide a useful, unique source of information on drinking status. Conclusions: The contribution of biomarkers to alcoholism clinical research would be enhanced if certain design strategies were incorporated into their application and if critical information were included in the research publication. This article offers a series of recommendations to improve on their use in a research context. [source] Creating culturally sensitive and community-sensitive measures of developmentNEW DIRECTIONS FOR CHILD & ADOLESCENT DEVELOPMENT, Issue 98 2002Nancy A. Busch-Rossnagel Research with ethnic minority and subcultural groups is often stymied by measures developed on samples of European Americans. This chapter presents recommendations to help researchers create measures that are sensitive to both the culture and the communities of research participants. [source] International development management: A Northern perspective,PUBLIC ADMINISTRATION & DEVELOPMENT, Issue 2 2010Jennifer M. Brinkerhoff Abstract This article reviews international development management (DM) from a Northern (primarily though not exclusively US-based) perspective, identifies lessons learned from experience, and discusses new challenges. The primary data sources are an on-line survey of DM scholars and practitioners, and the results of a focus group discussion. Survey respondents expressed dismay that the lessons from theory and experience have failed to penetrate the world of practice (largely due to political and bureaucratic constraints). They were generally pessimistic about DM's relevance and effectiveness in the face of new challenges. Our analysis points to implications for DM as a discipline, and examines the development manager as activist, the evolution of politics within DM, and DM as an art. Identified lessons related predominantly to DM's process and values dimensions, suggesting these may best define DM's unique contours. In response to the perceived absence of learning and to new challenges, research participants issued a call for development manager activism to speak truth to power, promote DM values, educate new actors and the public, and mentor and train newcomers to the field. This study underscores Northern-based development managers' commitment to the profession, including affirmation of the ongoing utility and relevance of DM's knowledge and lessons, and its underlying values of self-determination, social equity, and empowerment. Copyright © 2010 John Wiley & Sons, Ltd. [source] Managing Incidental Findings in Human Subjects Research: Analysis and RecommendationsTHE JOURNAL OF LAW, MEDICINE & ETHICS, Issue 2 2008Susan M. Wolf No consensus yet exists on how to handle incidental fnd-ings (IFs) in human subjects research. Yet empirical studies document IFs in a wide range of research studies, where IFs are fndings beyond the aims of the study that are of potential health or reproductive importance to the individual research participant. This paper reports recommendations of a two-year project group funded by NIH to study how to manage IFs in genetic and genomic research, as well as imaging research. We conclude that researchers have an obligation to address the possibility of discovering IFs in their protocol and communications with the IRB, and in their consent forms and communications with research participants. Researchers should establish a pathway for handling IFs and communicate that to the IRB and research participants. We recommend a pathway and categorize IFs into those that must be disclosed to research participants, those that may be disclosed, and those that should not be disclosed. [source] Disclosing Conflicts of Interest in Clinical Research: Views of Institutional Review Boards, Conflict of Interest Committees, and InvestigatorsTHE JOURNAL OF LAW, MEDICINE & ETHICS, Issue 3 2006Kevin P. Weinfurt Ph.D. Strategies for disclosing investigators' financial interests to potential research participants have been adopted by many research institutions. However, little is known about how decisions are made regarding disclosures of financial interests to potential research participants, including what is disclosed and the rationale for making these determinations. We sought to understand the attitudes, beliefs, and practices of institutional review board chairs, conflict of interest committee chairs, and investigators regarding disclosure of financial interests to potential research participants. Several themes emerged, including general attitudes toward conflicts of interest, circumstances in which financial interests should be disclosed, rationales and benefits of disclosure, what should be disclosed, negative effects of and barriers to disclosure, and timing and presentation of disclosure. Respondents cited several rationales for disclosure, including enabling informed decision making, promoting trust in researchers and research institutions, and reducing legal liability. There was general agreement that disclosure should happen early in the consent process. Respondents disagreed about whether to disclose the amounts of particular financial interests. Clarifying the goals of disclosure and understanding how potential research participants use the information will be critical in efforts to ensure the integrity of clinical research and to protect the rights and interests of participants. [source] Tales from the archive: methodological and ethical issues in historical geography researchAREA, Issue 3 2010Francesca P L Moore This paper is an exploration of methodological and ethical issues in historical geography research. Drawing on the experience of researching the historical geographies of abortion in late nineteenth- and early twentieth-century Lancashire, the paper discusses some of the ethical and methodological questions that historical research on sensitive topics raises. This paper investigates the politics of the archive and the forms of censorship researchers may encounter. It also explores the possibility of a conflict of interest between researcher and participant, including the dilemmas researchers face when research participants are dead, but remain important figures in the community. Moreover, the paper argues that the recent burgeoning interest in family and local history makes questions of method and ethics far more urgent for the geographer. In conclusion, the paper calls for more dialogue within geography about researching sensitive subjects, and also between geography and other disciplines. [source] Moving methods: constructing emotionally poignant geographies of HIV in Auckland, New ZealandAREA, Issue 3 2010Jason Myers As we strive to fully understand the meanings different people create and attach to places, we need methods that allow multiple and subjective experiences of place to be critically uncovered and understood. This paper reflects on the employment of photography and caption-writing in research with HIV-positive men-who-have-sex-with-men in Auckland, New Zealand. These methods contributed in constructing an argument that the acquisition of HIV affected experiences of both literal place as well as place-in-the-world for the research participants. With the ability to move with participants (both physically and emotionally), the methods helped to illustrate a range of (re)negotiations of self and place beyond diagnosis. Moreover, engagement with these methods resulted in personal gain for many of the participants in the research. It is concluded that the continued (re)development of creative (ethically sound) qualitative methods can add rigour to our attempts at representing the complexities inherent in the relationships between people and the places they occupy. [source] Obtaining active parental consent for school-based research: a guide for researchersAUSTRALIAN AND NEW ZEALAND JOURNAL OF PUBLIC HEALTH, Issue 3 2009Luke Wolfenden Abstract Objective: Schools increasingly require researchers to obtain active parental consent for students to participate in health research. We sought to identify effective strategies for the recruitment of child research participants through schools. Method: A search of Medline, PsycINFO, Educational Resources Information Center, ProQuest 5000 and the Cochrane Library electronic databases was conducted for the period 1988 to 2008. Results: The review found evidence that the following strategies may be effective in enhancing participation rates: 1) promotion of the research to school principals, teachers, parents and students; 2) dissemination of study information using methods allowing direct contact with parents (i.e. telephone or face-to-face); 3) provision of incentives to teachers, students and at a class level; 4) making reminder contacts; and 5) having a member of the research team co-ordinate and closely monitor the recruitment process. Conclusion and Implications: Application of these strategies should reduce the risk of non-response and other biases that result from selective non-participation. Further randomised controlled trials of these and other strategies are required to strengthen the evidence base. [source] Perils and possibilities: achieving best evidence from focus groups in public health researchAUSTRALIAN AND NEW ZEALAND JOURNAL OF PUBLIC HEALTH, Issue 2 2009Karen Willis Abstract Objective: Focus group research is often seen as a cost-effective way of gathering evidence from multiple research participants about the diversity of their views, experiences or beliefs. Our objective is to argue that focus group research only fulfils its potential if analysis of individual views is extended to include analysis of interaction between participants, so that we learn more why people hold these views. Approach: We outline the literature on focus group research, contrasting the ,quick-and-easy' approach with the demands of studies that are designed, conducted and analysed in a methodologically rigorous way to yield high quality public health evidence. Conclusion: Well-conducted focus groups contribute good evidence for public health decision making. The challenges of conducting high-quality studies should not be underestimated, and must involve rigorous analysis of both interaction and content. [source] Black and white differences in the perception of justiceBEHAVIORAL SCIENCES & THE LAW, Issue 5-6 2001Article first published online: 9 JAN 200, Deane C. Wiley Ph.D. This study examined how African Americans and Whites view the justice system in the United States. Three hundred and eighteen research participants were recruited from the campus of a local community college. The research participants viewed one of four different videotaped scenarios depicting an interaction between a police officer and a motorist. The scenes were identical except that the race of the motorist and the officer were varied. After viewing the videotaped scenario, the research participants were asked to rate the interaction. The results indicated that African Americans and Whites view the delivery of justice very differently. African Americans judged the police officers to be less impartial and more prejudiced than Whites. It will be useful to further explore these issues to better understand the potential impact of these negative feelings on important justice matters. Copyright © 2001 John Wiley & Sons, Ltd. [source] Accessing children as research participants: examining the role of gatekeepersCHILD: CARE, HEALTH AND DEVELOPMENT, Issue 4 2010I. Coyne No abstract is available for this article. [source] | ||||||||||||||||||||||||||||