Disclosure of HIV status and stigma in rural communities in Brazil: A conundrum for researchers

Étude de cas / Case study

Does research into sensitive areas do harm? Experiences of research participation after a child's diagnosis with Ewing's sarcoma

Objective: To investigate family members' experiences of involvement in a previous study (conducted August 1995 to June 1997) following their child's diagnosis with Ewing's sarcoma. Design: Retrospective survey, conducted between 1 November and 30 November 1997, using a postal questionnaire. Participants: Eighty-one of 97 families who had previously completed an in-depth interview as part of a national case-control study of Ewing's sarcoma. Main outcome measures: Participants' views on how participation in the previous study had affected them and what motivated them to participate. Results: Most study participants indicated that taking part in the previous study had been a positive experience. Most (n = 79 [97.5%]) believed their involvement would benefit others and were glad to have participated, despite expecting and finding some parts of the interview to be painful. Parents whose child was still alive at the time of the interview recalled participation as more painful than those whose child had died before the interview. Parents who had completed the interview less than a year before our study recalled it as being more painful than those who had completed it more than a year before. Conclusions: That people suffering bereavement are generally eager to participate in research and may indeed find it a positive experience is useful information for members of ethics review boards and other gatekeepers, who frequently need to determine whether studies into sensitive areas should be approved. Such information may also help members of the community to make an informed decision regarding participation in such research.

An experimental study to compare the interface pressure and experience of healthy participants when lying still for 20 minutes in a supine position on two different imaging surfaces

Introduction: Pressure ulcers are a high cost, high volume issue for health and medical care providers, affecting patients’ recovery and psychological wellbeing. The current research of support surfaces on pressure as a risk factor in the development of pressure ulcers is not relevant to the specialised, controlled environment of the radiological setting. Method: 38 healthy participants aged 19-51 were placed supine on two different imaging surfaces. The XSENSOR pressure mapping system was used to measure the interface pressure. Data was acquired over a time of 20 minutes preceded by 6 minutes settling time to reduce measurement error. Qualitative information regarding participants’ opinion on pain and comfort was recorded using a questionnaire. Data analysis was performed using SPSS 22. Results: Data was collected from 30 participants aged 19 to 51 (mean 25.77, SD 7.72), BMI from 18.7 to 33.6 (mean 24.12, SD 3.29), for two surfaces, following eight participant exclusions due to technical faults. Total average pressure, average pressure for jeopardy areas (head, sacrum & heels) and peak pressure for jeopardy areas were calculated as interface pressure in mmHg. Qualitative data showed that a significant difference in experiences of comfort and pain was found in the jeopardy areas (P<0.05) between the two surfaces. Conclusion: A significant difference is seen in average pressure between the two surfaces. Pain and comfort data also show a significant difference between the surfaces, both findings support the proposal for further investigation into the effects of radiological surfaces as a risk factor for the formation of pressure ulcers.

Expanding the research horizon in higher education : master's students' perceptions of research assistantships

This study explores how effectively current research assistantships impart research methods, skills, and attitudes; and how well those experiences prepare the next generation of researchers to meet the evolving needs of an ever-expanding, knowledge- based economy and society. Through personal interviews, 7 graduate student research assistants expressed their perceptions regarding their research assistantships. The open- ended interview questions emphasized (a) what research knowledge and skills the graduate students acquired; (b) what other lessons they took away from the experience; and (c) how the research assistantships influenced their graduate studies and future academic plans. After participants were interviewed, the data were transcribed, memberchecked, and then analyzed using a grounded theory research design. The findings show that research assistantships are valuable educational venues that can not only promote research learning but also benefit research assistants' master's studies and stimulate reflection regarding their future educational and research plans. Although data are limited to the responses of 7 students, findings can contribute to the enhancement of research assistantship opportunities as a means of developing skilled future researchers that in tum will benefit Canada as an emerging leader in research and development. The study is meant to serve as an informative source for (a) experienced researchers who have worked with research assistants; (b) researchers who are planning to hire research assistants; and (c) experienced and novice research assistants. Further, the study has the potential to inform future research training initiatives as well as related policies and practices.

Response Bias Using Two-Stage Data Collection: A study of elderly participants in a program.

Researchers examining the effects of programs, in this case a state-level pharmaceutical assistance program for the elderly, sometimes must rely on multiple methods of data collection. Two-stage data collection (e.g., a telephone interview followed by a mail questionnaire) was used to obtain a full range of information. Older age groups were found to participate less frequently in the telephone interview, while certain demographic factors characterized mail questionnaire nonparticipants, all of which supports past research. Results also show that those in the poorest health are less likely to participate in the mail survey. Combining the two methods did not result in high attrition, suggesting that innovation can be successfully employed. Knowledge of the bias associated with each method will aid in targeting special groups.

Characteristics and experiences of past participants in the Texas Peer Assistance Program for Nurses

There are nearly 200,000 licensed practicing nurses in the state of Texas, representing one-tenth of the nations' workforce. The prevalence of substance abuse among nurses is estimated to range between six and 20 percent in this professional group.^ Since March 1987, the Texas Peer Assistance Program for Nurses (TPAPN) has offered intervention, education, support and monitoring to nurses in Texas whose practice has become impaired due to substance abuse and/or mental illness. Since then approximately 44 percent of nurses who voluntarily signed participation agreements successfully completed the program; fifty-six percent have not. One determinant of completion for those nurses identified as chemically dependent is abstinence from mood altering substances. Other helping professions report higher rates of abstinence two years following treatment.^ The purpose of this study was to investigate the relationship between relapse, demographics, treatment variables, work setting, "stress" indicators and support factors for nurses who participated in TPAPN. A questionnaire was mailed to 1000 randomly selected nurses who had signed agreements since 1987 and were no longer active in the program. More than 41% of the questionnaires were returned undeliverable.^ Recipients of the questionnaire were known only to TPAPN, never to the investigator. All information was received anonymously except when the participant chose to sign the questionnaire. A cover letter explaining the study and inviting participation was enclosed. Completion and return of the questionnaire was considered consent to participate.^ Findings demonstrated a significant relationship between relapse and opiates as the drug of choice for past participants in the Texas Peer Assistance Program for Nurses. Significant associations were found among factors such as control at work, support, physical complaints, job security, self-esteem and employment in this sample. Respondents shared copious written comments about their experiences in TPAPN. These data were analyzed using qualitative methods and compared with similar studies of recovering nurses. Further research with nurses whose practice has been affected by abuse of chemical and mental illness is warranted. ^

New Sites, New Challenges? Ethical and Methodological Questions in the Context of Research on Migration Exclusion

The challenges of research ethics and methodologies have been reflected on extensively, but – aside from the context of feminist methodologies – less so in relation to research on particular migration sites such as in transit, detention centres, at the borders or within migration administration. First attempts in this direction have been made (Düvell et al. 2010, Fresia et al. 2005, Riedner 2014, van Liempt/Bilger2009), however, more reflection and theorization is needed, considering the contested nature of these temporal and volatile sites. In this workshop, we thus aim at examining methodological as well as ethical questions that arise during field work: We attempt to reflect the power relations involved in the research process, the ethics of research design, the dissemination of research results, the question of gaining access to and – whenever necessary – staying in contact with our research subjects. How can we negotiate informed consent with subjects whose life is currently marked by transit and insecurity concerning their own future, and who are in an uncertain situation in which substantial information (legal, social, cultural etc.) is likely to be missing? How do we deal with the dilemma of possibly contributing to knowledge production that might facilitate removals and deportations in the future, considering that the reception of the results is not in the hands of the researchers? How do we deal with the anticipated as well as unexpected impacts of our research on social and political practice? Regarding fieldwork in state institutions, how do we negotiate the multiple loyalties we often find ourselves faced with as social researchers, both with the excluded migrants and with the authorities implementing the exclusions – two groupings considered to be opposite to each other (Lavanchy 2013)? Which different roles do researchers need to take on? The aim of our workshop is first and foremost to exchange experiences on fieldwork with others doing qualitative research on related topics and to consider its possible implications – including affective dimensions – for all participants involved in the research process: the migrants, the security staff of detention centres, its social workers, border police and bureaucrats and, last but not least, the researchers themselves. Furthermore, we generally wish to reflect upon the question of how best to conduct research in this contested field, applying an interdisciplinary perspective.

Impact of a modified dietary plan on the health related quality of life of minority participants in the Women's Healthy Eating and Living (WHEL) Study

Advances in medical technology, in genetics, and in clinical research have led to early detection of cancer, precise diagnosis, and effective treatment modalities. Decline in cancer incidence and mortality due to cancer has led to increased number of long-term survivors. However, the ethnic minority population has not experienced this decline and still continues to carry a disparate proportion of the cancer burden. Majority of the clinical research including survivorship studies have recruited and continue to recruit a convenient sample of middle- to upper-class Caucasian survivors. Thus, minorities are underrepresented in cancer research in terms of both clinical studies and in health related quality of life (HRQOL) studies. ^ Life style and diet have been associated with increased risk of breast cancer. High vegetable low fat diet has been shown to reduce recurrence of breast cancer and early death. The Women's Healthy Eating and Living Study is an ongoing multi-site randomized controlled trial that is evaluating the high-vegetable low fat diet in reducing the recurrence of breast cancer and early death. The purpose of this dissertation was to (1) compare the impact of the modified diet on the HRQOL during the first 12-month period on specific Minorities and matched Caucasians; (2) identify predictors that significantly impact the HRQOL of the study participants; and (3) using the structural equation modeling assess the impact of nutrition on the HRQOL of the intervention group participants. Findings suggest that there are no significant differences in change in HRQOL between Minorities and Caucasians; between Minorities in the intervention group and those in the comparison group; and between women in the intervention group and those in the comparison group. Minority indicator variable and Intervention/Comparison group indicator variable were not found to be good predictors of HRQOL. Although the structural equation models suggested viable representation of the relationship between the antecedent variables, the mediating variables and the two outcome variables, the impact of nutrition was not statistically significant to be included in the model. This dissertation, by analyzing the HRQOL of minorities in the WHEL Study, attempted to add to the knowledge base specific to minority cancer survivors. ^

A systematic review of the methods used to assess race and racial disparities in uterine fibroid research

Context: Black women are reported to have a higher prevalence of uterine fibroids, and a threefold higher incidence rate and relative risk for clinical uterine fibroid development as compared to women of other races. Uterine fibroid research has reported that black women experience greater uterine fibroid morbidity and disproportionate uterine fibroid disease burden. With increased interest in understanding uterine fibroid development, and race being a critical component of uterine fibroid assessment, it is imperative that the methods used to determine the race of research participants is defined and the operational definition of the use of race as a variable is reported for methodological guidance, and to enable the research community to compare statistical data and replicate studies. ^ Objectives: To systematically review and evaluate the methods used to assess race and racial disparities in uterine fibroid research. ^ Data Sources: Databases searched for this review include: OVID Medline, NML PubMed, Ebscohost Cumulative Index to Nursing and Allied Health Plus with Full Text, and Elsevier Scopus. ^ Review Methods: Articles published in English were retrieved from data sources between January 2011 and March 2011. Broad search terms, uterine fibroids and race, were employed to retrieve a comprehensive list of citations for review screening. The initial database yield included 947 articles, after duplicate extraction 485 articles remained. In addition, 771 bibliographic citations were reviewed to identify additional articles not found through the primary database search, of which 17 new articles were included. In the first screening, 502 titles and abstracts were screened against eligibility questions to determine citations of exclusion and to retrieve full text articles for review. In the second screening, 197 full texted articles were screened against eligibility questions to determine whether or not they met full inclusion/exclusion criteria. ^ Results: 100 articles met inclusion criteria and were used in the results of this systematic review. The evidence suggested that black women have a higher prevalence of uterine fibroids when compared to white women. None of the 14 studies reporting data on prevalence reported an operational definition or conceptual framework for the use of race. There were a limited number of studies reporting on the prevalence of risk factors among racial subgroups. Of the 3 studies, 2 studies reported prevalence of risk factors lower for black women than other races, which was contrary to hypothesis. And, of the three studies reporting on prevalence of risk factors among racial subgroups, none of them reported a conceptual framework for the use of race. ^ Conclusion: In the 100 uterine fibroid studies included in this review over half, 66%, reported a specific objective to assess and recruit study participants based upon their race and/or ethnicity, but most, 51%, failed to report a method of determining the actual race of the participants, and far fewer, 4% (only four South American studies), reported a conceptual framework and/or operational definition of race as a variable. However, most, 95%, of all studies reported race-based health outcomes. The inadequate methodological guidance on the use of race in uterine fibroid studies, purporting to assess race and racial disparities, may be a primary reason that uterine fibroid research continues to report racial disparities, but fails to understand the high prevalence and increased exposures among African-American women. A standardized method of assessing race throughout uterine fibroid research would appear to be helpful in elucidating what race is actually measuring, and the risk of exposures for that measurement. ^

The ethics of paying drug users who participate in research: a review and practical recommendations

THE PAYMENT OF RESEARCH PARTICIPANTS raises ethical and empirical questions that have special importance in addictions research involving drug-dependent participants. Despite a now large literature on human subjects payment, what is still needed is practical guidance for investigators and ethics committees. This paper reviews the literature on: current payment practices and guidelines; defining features of undue and due incentives and fair reimbursement; and the significance of risks and harms that may arise from paying drug using participants. We conclude that research payments are ethically acceptable in most circumstances of addictions research, but should be closely scrutinized in situations where these may exacerbate existing harms or create additional risks for participants and investigators. General principles, key questions and procedural options are highlighted for an applied approach to ethical research payments. Future research directions are identified.

Ethical issues in neuroimaging health research:an IPA study with research participants

Neuroimaging is increasingly used to understand conditions like stroke and epilepsy. However, there is growing recognition that neuroimaging can raise ethical issues. We used interpretative phenomenological analysis to analyse interview data pre-and post-scan to explore these ethical issues. Findings show participants can become anxious prior to scanning and the protocol for managing incidental findings is unclear. Participants lacked a frame of reference to contextualize their expectations and often drew on medical narratives. Recommendations to reduce anxiety include dialogue between researcher and participant to clarify understanding during consent and the use of a `virtual tour' of the neuroimaging experience.

The contextual evaluation of research on sexually explicit materials

This thesis criticises many psychological experiments on 'pornography' which attempt to demonstrate how 'pornography' causes and/or equals rape. It challenges simplistic definitions of 'pornography', arguing that sexually explicit materials (SEM) are constructed and interpreted in a number of different ways; and demonstrates that how, when and where materials are depicted or viewed will influence perceptions and reactions. In addition, it opposes the overreliance on male undergraduates as participants in 'porn' research. Theories of feminist psychology and reflexivity are used throughout the thesis, and provide a detailed contextual framework in a complex area. Results from a number of interlinking studies which use a variety of methodological approaches (focus groups, questionnaires and content analysis), indicate how contextual issues are omitted in much existing research on SEM. These include the views and experiences participants' hold prior to completing SEM studies; their opinions about those who 'use' 'pornography'; their understanding of key terms linked with SEM (eg: pornography and erotica); and discussions of sexual magazines aimed at male and female audiences. Participants' reactions to images and texts associated with SEM presented in different contexts are discussed. Three main conclusions are drawn from this thesis. Firstly, images deemed 'pornographic' differ through historical and cultural periods' and political, economic and social climates, so 'experimental' approaches may not always be the most appropriate research tool. Secondly, there is not one definition, source, or factor which may be named 'pornography'; and thirdly the context and presentation of materials influence how images are perceived and reacted to. The thesis argues a number of factors influence view of 'pornography', suggesting SEM may be 'in the eye of the beholder'.

Measuring the economic impact of Research Joint Ventures supported by the EU Framework Programme

The objective of this paper is to analyse the effects of international R&D cooperation on firms’ economic performance. Our approach, based on a complete data set with information about Spanish participants in research joint ventures supported by the EU Framework Programme during the period 1995-2005, establishes a recursive model structure to capture the relationship between R&D cooperation, knowledge generation and economic results, which are measured by labour productivity. In the analysis we take into account that the participation in this specific type of cooperative projects implies a selection process that includes both the self-selection by participants to join the consortia and the selection of projects by the European Commission to award the public aid. Empirical analysis has confirmed that: (1) R&D co-operation has a positive impact on the technological capacity of firms, captured through intan-gible fixed assets and (2) the technological capacity of firms is positively related to their productivity.

Do GPs Make Good Research Participants?

Background Childhood cancers cause the largest numbers of deaths by disease in children aged 0-14 years1 with more than 400 children a year dying from cancer in the UK.2 Parental preference for their child to die within the family home2 coupled with the speciality of children’s palliative care medicine being still in its infancy, highlights the importance of the GP’s role in this highly specialised area of clinical practice. An understanding of the GP’s role will help inform the development of this specialty and identify best collaborative practice. A NIHR/CAT CL funded study examined the role of the GP in paediatric oncology palliative and bereavement care from the perspective of both the GP and the bereaved parent. This presentation will detail how GPs were approached and recruited, the reasons GPs declined participation and factors influencing the actual data collection. Methods The mixed method study used both qualitative and quantitative data collection methods. Phase 1: Semi-structured interviews to explore the experiences of GPs and parents. Phase 2: Q methodology with GPs who had a child with cancer on their caseload. Q methodology is a research tool that uses statistical analysis to cluster participants’ experiences according to similarity of their viewpoint Results The method and effectiveness of recruiting GPs for both phases of the study will be presented. In addition factors influencing collecting such emotive and sensitive data will be discussed. Conclusions Researcher flexibility and perseverance in participant recruitment was rewarded by the rich data collected. Findings from this study have identified four different GP role viewpoints and have provided a new dimension in understanding GP viewpoints on their role in this arena.

A century of research: what have we learned about the interaction of Trypanosoma cruzi with host cells?

Since the discovery of Trypanosoma cruzi and the brilliant description of the then-referred to "new tripanosomiasis" by Carlos Chagas 100 years ago, a great deal of scientific effort and curiosity has been devoted to understanding how this parasite invades and colonises mammalian host cells. This is a key step in the survival of the parasite within the vertebrate host, and although much has been learned over this century, differences in strains or isolates used by different laboratories may have led to conclusions that are not as universal as originally interpreted. Molecular genotyping of the CL-Brener clone confirmed a genetic heterogeneity in the parasite that had been detected previously by other techniques, including zymodeme or schizodeme (kDNA) analysis. T. cruzi can be grouped into at least two major phylogenetic lineages: T. cruzi I, mostly associated with the sylvatic cycle and T. cruzi II, linked to human disease; however, a third lineage, T. cruziIII, has also been proposed. Hybrid isolates, such as the CL-Brener clone, which was chosen for sequencing the genome of the parasite (Elias et al. 2005, El Sayed et al. 2005a), have also been identified. The parasite must be able to invade cells in the mammalian host, and many studies have implicated the flagellated trypomastigotes as the main actor in this process. Several surface components of parasites and some of the host cell receptors with which they interact have been described. Herein, we have attempted to identify milestones in the history of understanding T. cruzi- host cell interactions. Different infective forms of T. cruzi have displayed unexpected requirements for the parasite to attach to the host cell, enter it, and translocate between the parasitophorous vacuole to its final cytoplasmic destination. It is noteworthy that some of the mechanisms originally proposed to be broad in function turned out not to be universal, and multiple interactions involving different repertoires of molecules seem to act in concert to give rise to a rather complex interplay of signalling cascades involving both parasite and cellular components.