Participant Action Research and Environmental Education

Directory of Open Access Journals (Sweden)

Yasmin Coromoto Requena Bolívar

2018-02-01

Full Text Available The committed participation of the inhabitants in diverse Venezuelan communities is fundamental in the search of solution to environmental problems that they face in the daily life; in the face of this reality, studies based on Participant Action Research were addressed, through a review and documentary analysis of four works related to community participation, carried out in the state of Lara. For this, the following question was asked: ¿What was the achievement in the solution of environmental problems in the communities, reported through the master's degree works oriented under participant action research and presented to Yacambú University in 2011-2013? A qualitative approach is used, approaching the information according to the stages suggested by Arias (2012: Search of sources, initial reading of documents, preparation of the preliminary scheme, data collection, analysis and interpretation of the information, formulation of the final scheme, introduction and conclusions, final report. It begins with the definition of the units of analysis and inquiry of the literature, through theoretical positions, concepts and contributions on: participant action research, participation and environmental education, to culminate with the analysis and interpretation of the information and the conclusions of this investigation. For the collection of the data, the bibliographic records were used with the purpose of organizing the information on the researches consulted, and of summary for the synthesis of the documents. It was concluded that, in the analyzed degree works, the purpose of the IAP was fulfilled, which consisted in the transformation of the problem-situation, which allowed the IAP to become the propitious scenario to promote environmental participation and education not formal.

Older adolescents’ views regarding participation in Facebook research

Science.gov (United States)

Moreno, Megan A; Grant, Alison; Kacvinsky, Lauren; Moreno, Peter; Fleming, Michael

2012-01-01

Purpose Facebook continues to grow in popularity among adolescents as well as adolescent researchers. Guidance on conducting this research with appropriate attention to privacy and ethics is scarce. To inform such research efforts, the purpose of this study was to determine older adolescents’ responses after learning that they were participants in a research study that involved identification of participants using Facebook. Methods Public Facebook profiles of older adolescents age 18 to 19 years from a large state university were examined. Profile owners were then interviewed. During the interview participants were informed that they were identified by examining publicly available Facebook profiles. Participants were asked to discuss their views on this research method. Results A total of 132 participants completed the interview (70% response rate), the average age was 18.4 years (SD=0.5) and our sample included 64 males (48.5%). Participant responses included: endorsement (19.7%), fine (36.4%), neutral (28.8%), uneasy (9.1%) and concerned (6.1%). Among participants who were uneasy or concerned, the majority voiced confusion regarding their current profile security settings (p=0.00). Conclusion The majority of adolescent participants viewed the use of Facebook for research positively. These findings are consistent with the approach taken by many US courts. Researchers may consider these findings when developing research protocols involving Facebook. PMID:23084164

Reactions to Participating in Dating Violence Research: Are Our Questions Distressing Participants?

Science.gov (United States)

Shorey, Ryan C.; Cornelius, Tara L.; Bell, Kathryn M.

2011-01-01

In recent years, there has been increased research focus on dating violence, producing important information for reducing these violent relationships. Yet Institutional Review Boards (IRBs) are often hesitant to approve research on dating violence, citing emotional distress of participants as a possible risk of participation. However, no known…

Researching participation in adult education

DEFF Research Database (Denmark)

Kondrup, Sissel

It is a widespread perception that the challenge of increasing participation in adult education and training has intensified due to the transformation from industrial to knowledge based societies and the transformation implies that it becomes pivotal to increase the supply of highly qualified...... labour. This has fostered an interest in examining why and how people engage in adult education, how participation and especially non-participation in adult education can be explained and how participation rates can be increased. In this paper I outline different traditions within research on recruitment...... to and participation in adult education and training focusing primarily on unskilled and low skilled workers. I present how the traditions contribute to the perception of what effects participation and argue that the existing traditions must be extended and a new framework must be applied in order to understand how...

Retention of minority participants in clinical research studies.

Science.gov (United States)

Keller, Colleen S; Gonzales, Adelita; Fleuriet, K Jill

2005-04-01

Recruitment of minority participants for clinical research studies has been the topic of several analytical works. Yet retention of participants, most notably minority and underserved populations, is less reported and understood, even though these populations have elevated health risks. This article describes two related, intervention-based formative research projects in which researchers used treatment theory to address issues of recruitment and retention of minority women participants in an exercise program to reduce obesity. Treatment theory incorporates a model of health promotion that allows investigators to identify and control sources of extraneous variables. The authors' research demonstrates that treatment theory can improve retention of minority women participants by considering critical inputs, mediating processes, and substantive participant characteristics in intervention design.

Relative solidarity: Conceptualising communal participation in genomic research among potential research participants in a developing Sub-Saharan African setting.

Science.gov (United States)

Ogunrin, Olubunmi; Woolfall, Kerry; Gabbay, Mark; Frith, Lucy

2018-01-01

As genomic research gathers momentum in sub-Saharan Africa, it has become increasingly important to understand the reasons why individuals wish to participate in this kind of medical research. Against the background of communitarianism conceived as typical of African communities, it is often suggested that individuals consent to participate on the grounds of solidarity and to further the common good. In this paper, we seek to explore this contention by presenting data from focus groups with potential research participants about what would influence their decisions to participate in genomic research. These focus groups were conducted as part of a larger qualitative study with a purposively selected group of participants from a community situated in south west Nigeria. We conducted fifteen focus group sessions comprising 50 participants organized by age and sex, namely: 1) adult (>30 years) males, 2) adult females, 3) youth (18-30 years) males, and 4) youth females. A mixed age-group was conducted to probe different views between the age groups. There was discordance and clear division between the adults and youths regarding the decision to participate in genomic research based on commitment to communal values. Adults based their decision to participate on altruism and furthering the common good while youths based their decisions on personal benefits and preferences and also took into account the views and welfare of family members and neighbours. This discordance suggests a 'generational shift' and we advance a model of 'relative solidarity' among the youths, which is different from the communal solidarity model typical of African communitarianism. Our findings suggest the need for a closer look at strategies for implementation of community engagement and informed consent in genomic research in this region, and we recommend further studies to explore this emerging trend.

Shedding light on research participation effects in behaviour change trials: a qualitative study examining research participant experiences

Directory of Open Access Journals (Sweden)

Virginia MacNeill

2016-01-01

Full Text Available Abstract Background The sequence of events in a behaviour change trial involves interactions between research participants and the trial process. Taking part in such a study has the potential to influence the behaviour of the participant, and if it does, this can engender bias in trial outcomes. Since participants’ experience has received scant attention, the aim of this study is thus to generate hypotheses about which aspects of the conduct of behaviour change trials might matter most to participants, and thus have potential to alter subsequent behaviours and bias trial outcomes Methods Twenty participants were opportunistically screened for a health compromising behaviour (unhealthy diet, lack of exercise, smoking or alcohol consumption and recruited if eligible. Semi structured face to face interviews were conducted, after going through the usual processes involved in trial recruitment, baseline assessment and randomisation. Participants were given information on the contents of an intervention or control condition in a behaviour change trial, which was not actually implemented. Three months later they returned to reflect on these experiences and whether they had any effect on their behaviour during the intervening period. Data from the latter interview were analysed thematically using a modified grounded theory approach. Results The early processes of trial participation raised awareness of unhealthy behaviours, although most reported having had only fleeting intentions to change their behaviour as a result of taking part in this study, in the absence of interventions. However, careful examination of the accounts revealed evidence of subtle research participation effects, which varied according to the health behaviour, and its perceived social acceptability. Participants’ relationships with the research study were viewed as somewhat important in stimulating thinking about whether and how to make lifestyle changes. Conclusion These

Reflexivity: The Creation of Liminal Spaces--Researchers, Participants, and Research Encounters.

Science.gov (United States)

Enosh, Guy; Ben-Ari, Adital

2016-03-01

Reflexivity is defined as the constant movement between being in the phenomenon and stepping outside of it. In this article, we specify three foci of reflexivity--the researcher, the participant, and the encounter--for exploring the interview process as a dialogic liminal space of mutual reflection between researcher and participant. Whereas researchers' reflexivity has been discussed extensively in the professional discourse, participants' reflexivity has not received adequate scholarly attention, nor has the promise inherent in reflective processes occurring within the encounter. © The Author(s) 2015.

Social Media Resources for Participative Design Research

OpenAIRE

Qaed, Fatema; Briggs, Jo; Cockton, Gilbert

2016-01-01

We present our experiences of novel value from online social media for Participative Design (PD) research. We describe how particular social media (e.g. Facebook, Pinterest, WhatsApp and Twitter) were used during a five-year project on learning space design by the researcher and interested teachers across all research phases (contextual review, user studies, PD action research). Social media were used to source and share comments, photographs and video documentation, supporting participation ...

Influences on decision-making for undergoing plastic surgery: a mental models and quantitative assessment.

Science.gov (United States)

Darisi, Tanya; Thorne, Sarah; Iacobelli, Carolyn

2005-09-01

Research was conducted to gain insight into potential clients' decisions to undergo plastic surgery, their perception of benefits and risks, their judgment of outcomes, and their selection of a plastic surgeon. Semistructured, open-ended interviews were conducted with 60 people who expressed interest in plastic surgery. Qualitative analysis revealed their "mental models" regarding influences on their decision to undergo plastic surgery and their choice of a surgeon. Interview results were used to design a Web-based survey in which 644 individuals considering plastic surgery responded. The desire for change was the most direct motivator to undergo plastic surgery. Improvements to physical well-being were related to emotional and social benefits. When prompted about risks, participants mentioned physical, emotional, and social risks. Surgeon selection was a critical influence on decisions to undergo plastic surgery. Participants gave considerable weight to personal consultation and believed that finding the "right" plastic surgeon would minimize potential risks. Findings from the Web-based survey were similar to the mental models interviews in terms of benefit ratings but differed in risk ratings and surgeon selection criteria. The mental models interviews revealed that interview participants were thoughtful about their decision to undergo plastic surgery and focused on finding the right plastic surgeon.

Genuine participation in participant-centred research initiatives: the rhetoric and the potential reality.

Science.gov (United States)

Feeney, Oliver; Borry, Pascal; Felzmann, Heike; Galvagni, Lucia; Haukkala, Ari; Loi, Michele; Nordal, Salvör; Rakic, Vojin; Riso, Brígida; Sterckx, Sigrid; Vears, Danya

2018-04-01

The introduction of Web 2.0 technology, along with a population increasingly proficient in Information and Communications Technology (ICT), coupled with the rapid advancements in genetic testing methods, has seen an increase in the presence of participant-centred research initiatives. Such initiatives, aided by the centrality of ICT interconnections, and the ethos they propound seem to further embody the ideal of increasing the participatory nature of research, beyond what might be possible in non-ICT contexts alone. However, the majority of such research seems to actualise a much narrower definition of 'participation'-where it is merely the case that such research initiatives have increased contact with participants through ICT but are otherwise non-participatory in any important normative sense. Furthermore, the rhetoric of participant-centred initiatives tends to inflate this minimalist form of participation into something that it is not, i.e. something genuinely participatory, with greater connections with both the ICT-facilitated political contexts and the largely non-ICT participatory initiatives that have expanded in contemporary health and research contexts. In this paper, we highlight that genuine (ICT-based) 'participation' should enable a reasonable minimum threshold of participatory engagement through, at least, three central participatory elements: educative, sense of being involved and degree of control. While we agree with criticisms that, at present, genuine participation seems more rhetoric than reality, we believe that there is clear potential for a greater ICT-facilitated participatory engagement on all three participatory elements. We outline some practical steps such initiatives could take to further develop these elements and thereby their level of ICT-facilitated participatory engagement.

Payment of research participants: current practice and policies of Irish research ethics committees.

Science.gov (United States)

Roche, Eric; King, Romaine; Mohan, Helen M; Gavin, Blanaid; McNicholas, Fiona

2013-09-01

Payment of research participants helps to increase recruitment for research studies, but can pose ethical dilemmas. Research ethics committees (RECs) have a centrally important role in guiding this practice, but standardisation of the ethical approval process in Ireland is lacking. Our aim was to examine REC policies, experiences and concerns with respect to the payment of participants in research projects in Ireland. Postal survey of all RECs in Ireland. Response rate was 62.5% (n=50). 80% of RECs reported not to have any established policy on the payment of research subjects while 20% had refused ethics approval to studies because the investigators proposed to pay research participants. The most commonly cited concerns were the potential for inducement and undermining of voluntary consent. There is considerable variability among RECs on the payment of research participants and a lack of clear consensus guidelines on the subject. The development of standardised guidelines on the payment of research subjects may enhance recruitment of research participants.

Researchers' perspectives on pediatric obesity research participant recruitment.

Science.gov (United States)

Parikh, Yasha; Mason, Maryann; Williams, Karen

2016-12-01

Childhood obesity prevalence has tripled over the last three decades. Pediatric obesity has important implications for both adult health as well as the United States economy. In order to combat pediatric obesity, exploratory studies are necessary to create effective interventions. Recruitment is an essential part of any study, and it has been challenging for all studies, especially pediatric obesity studies. The objective of this study was to understand barriers to pediatric obesity study recruitment and review facilitators to overcome recruitment difficulties. Twenty four childhood obesity researchers were contacted. Complete data for 11 researchers were obtained. Interviews were transcribed and analyzed using content analysis. Grounded Theory methodological approach was used, as this was an exploratory study. Investigators YP and MM coded the interviews using 28 codes. Barriers to recruitment included: family and study logistics, family economics, lack of provider interest, invasive protocols, stigma, time restraints of clinicians, lack of patient motivation/interest, groupthink of students in a classroom, and participants who do not accept his or her own weight status. Facilitators to enhance recruitment practices included accommodating participants outside of regular clinic hours, incentivizing participants, cultivating relationships with communities, schools and clinics prior to study recruitment, emphasizing benefits of a study for the patient, and shifting language to focus on health rather than obesity. Pediatric obesity researchers face many standard and some unique challenges to recruitment, reflecting challenges common to clinical research as well as some specific to pediatrics and some specific to obesity research. Both pediatric studies as well as obesity studies are an added challenge to the already-difficult task of general study recruitment. Our findings can be used to make researchers more aware of potential difficulties, approaches and on

Child Participant Roles in Applied Linguistics Research

Science.gov (United States)

Pinter, Annamaria

2014-01-01

Children's status as research participants in applied linguistics has been largely overlooked even though unique methodological and ethical concerns arise in projects where children, rather than adults, are involved. This article examines the role of children as research participants in applied linguistics and discusses the limitations of…

U.S. Department of Energy student research participation programs. Underrepresented minorities in U.S. Department of Energy student research participation programs

Energy Technology Data Exchange (ETDEWEB)

NONE

1996-03-01

The purpose of this study was to identify those particular aspects of US Department of Energy (DOE) research participation programs for undergraduate and graduate students that are most associated with attracting and benefiting underrepresented minority students and encouraging them to pursue careers in science, engineering, and technology. A survey of selected former underrepresented minority participants, focus group analysis, and critical incident analysis serve as the data sources for this report. Data collected from underrepresented minority participants indicate that concerns expressed and suggestions made for conducting student research programs at DOE contractor facilities are not remarkably different from those made by all participants involved in such student research participation programs. With the exception of specific suggestions regarding recruitment, the findings summarized in this report can be interpreted to apply to all student research participants in DOE national laboratories. Clearly defined assignments, a close mentor-student association, good communication, and an opportunity to interact with other participants and staff are those characteristics that enhance any educational program and have positive impacts on career development.

Cancer Research Participation Beliefs and Behaviors of a Southern Black Population: A Quantitative Analysis of the Role of Structural Factors in Cancer Research Participation.

Science.gov (United States)

Farr, Deeonna E; Brandt, Heather M; Comer, Kimberly D; Jackson, Dawnyéa D; Pandya, Kinjal; Friedman, Daniela B; Ureda, John R; Williams, Deloris G; Scott, Dolores B; Green, Wanda; Hébert, James R

2015-09-01

Increasing the participation of Blacks in cancer research is a vital component of a strategy to reduce racial inequities in cancer burden. Community-based participatory research (CBPR) is especially well-suited to advancing our knowledge of factors that influence research participation to ultimately address cancer-related health inequities. A paucity of literature focuses on the role of structural factors limiting participation in cancer research. As part of a larger CBPR project, we used survey data from a statewide cancer needs assessment of a Black faith community to examine the influence of structural factors on attitudes toward research and the contributions of both structural and attitudinal factors on whether individuals participate in research. Regression analyses and non-parametric statistics were conducted on data from 727 adult survey respondents. Structural factors, such as having health insurance coverage, experiencing discrimination during health care encounters, and locale, predicted belief in the benefits, but not the risks, of research participation. Positive attitudes toward research predicted intention to participate in cancer research. Significant differences in structural and attitudinal factors were found between cancer research participants and non-participants; however, directionality is confounded by the cross-sectional survey design and causality cannot be determined. This study points to complex interplay of structural and attitudinal factors on research participation as well as need for additional quantitative examinations of the various types of factors that influence research participation in Black communities.

Researchers' participation in and motivations for engaging with research information management systems.

Directory of Open Access Journals (Sweden)

Besiki Stvilia

Full Text Available This article examined how researchers participated in research information management systems (RIMSs, their motivations for participation, and their priorities for those motivations. Profile maintenance, question-answering, and endorsement activities were used to define three cumulatively increasing levels of participation: Readers, Record Managers, and Community Members. Junior researchers were more engaged in RIMSs than were senior researchers. Postdocs had significantly higher odds of endorsing other researchers for skills and being categorized as Community Members than did full and associate professors. Assistant professors were significantly more likely to be Record Managers than were members of any other seniority categories. Finally, researchers from the life sciences showed a significantly higher propensity for being Community Members than Readers and Record Managers when compared with researchers from engineering and the physical sciences, respectively.When performing activities, researchers were motivated by the desire to share scholarship, feel competent, experience a sense of enjoyment, improve their status, and build ties with other members of the community. Moreover, when researchers performed activities that directly benefited other members of a RIMS, they assigned higher priorities to intrinsic motivations, such as perceived self-efficacy, enjoyment, and building community ties. Researchers at different stages of their academic careers and disciplines ranked some of the motivations for engaging with RIMSs differently. The general model of research participation in RIMSs; the relationships among RIMS activities; the motivation scales for activities; and the activity, seniority, and discipline-specific priorities for the motivations developed by this study provide the foundation for a framework for researcher participation in RIMSs. This framework can be used by RIMSs and institutional repositories to develop tools and design

Researchers' participation in and motivations for engaging with research information management systems.

Science.gov (United States)

Stvilia, Besiki; Wu, Shuheng; Lee, Dong Joon

2018-01-01

This article examined how researchers participated in research information management systems (RIMSs), their motivations for participation, and their priorities for those motivations. Profile maintenance, question-answering, and endorsement activities were used to define three cumulatively increasing levels of participation: Readers, Record Managers, and Community Members. Junior researchers were more engaged in RIMSs than were senior researchers. Postdocs had significantly higher odds of endorsing other researchers for skills and being categorized as Community Members than did full and associate professors. Assistant professors were significantly more likely to be Record Managers than were members of any other seniority categories. Finally, researchers from the life sciences showed a significantly higher propensity for being Community Members than Readers and Record Managers when compared with researchers from engineering and the physical sciences, respectively. When performing activities, researchers were motivated by the desire to share scholarship, feel competent, experience a sense of enjoyment, improve their status, and build ties with other members of the community. Moreover, when researchers performed activities that directly benefited other members of a RIMS, they assigned higher priorities to intrinsic motivations, such as perceived self-efficacy, enjoyment, and building community ties. Researchers at different stages of their academic careers and disciplines ranked some of the motivations for engaging with RIMSs differently. The general model of research participation in RIMSs; the relationships among RIMS activities; the motivation scales for activities; and the activity, seniority, and discipline-specific priorities for the motivations developed by this study provide the foundation for a framework for researcher participation in RIMSs. This framework can be used by RIMSs and institutional repositories to develop tools and design mechanisms to increase

Paternalism and utilitarianism in research with human participants.

Science.gov (United States)

Resnik, David B

2015-03-01

In this article I defend a rule utilitarian approach to paternalistic policies in research with human participants. Some rules that restrict individual autonomy can be justified on the grounds that they help to maximize the overall balance of benefits over risks in research. The consequences that should be considered when formulating policy include not only likely impacts on research participants, but also impacts on investigators, institutions, sponsors, and the scientific community. The public reaction to adverse events in research (such as significant injury to participants or death) is a crucial concern that must be taken into account when assessing the consequences of different policy options, because public backlash can lead to outcomes that have a negative impact on science, such as cuts in funding, overly restrictive regulation and oversight, and reduced willingness of individuals to participate in research. I argue that concern about the public reaction to adverse events justifies some restrictions on the risks that competent, adult volunteers can face in research that offers them no significant benefits. The paternalism defended here is not pure, because it involves restrictions on the rights of investigators in order to protect participants. It also has a mixed rationale, because individual autonomy may be restricted not only to protect participants from harm but also to protect other stakeholders. Utility is not the sole justification for paternalistic research policies, since other considerations, such as justice and respect for individual rights/autonomy, must also be taken into account.

Participation in HIV research: the importance of clinic contact factors.

Science.gov (United States)

Worthington, Catherine A; Gill, M John

2008-08-01

Recruiting minority populations living with HIV to many types of clinic-based HIV research is a concern. This study examined an expanded range of predictors of HIV research participation (clinic contact, clinical, and personal characteristics) to investigate observed ethnocultural differences in HIV research participation. Research participation was defined as participation in any of diagnostic, pathogenesis, drug trial or survey research. Logistic regression modeling was used to predict research participation of 657 eligible patients (93% of the patient population) who began care between January 1997 and the end of September 2003 at a regional outpatient HIV care program in Calgary, Canada. Approximately one third (32%) were non-white, including 18% Aboriginal, 9% black, 4% Asian, and 1% Hispanic individuals. Twenty-nine percent (187/657) of the patients participated in at least one study of any kind. Multivariate analysis indicated that the strongest predictors of any research participation (including diagnostic, pathogenesis, drug trial, or survey studies) are clinical (including nadir CD4 count [odds ratio {OR} = 0.132, p percentage of appointments kept [OR = 1.022, p service use shown by these groups that may influence research participation. To attract under researched populations, attention should shift from the "who" of research participation to the "how" of clinical interactions.

Understanding participation by African Americans in cancer genetics research.

Science.gov (United States)

McDonald, Jasmine A; Barg, Frances K; Weathers, Benita; Guerra, Carmen E; Troxel, Andrea B; Domchek, Susan; Bowen, Deborah; Shea, Judy A; Halbert, Chanita Hughes

2012-01-01

Understanding genetic factors that contribute to racial differences in cancer outcomes may reduce racial disparities in cancer morbidity and mortality. Achieving this goal will be limited by low rates of African American participation in cancer genetics research. We conducted a qualitative study with African American adults (n = 91) to understand attitudes about participating in cancer genetics research and to identify factors that are considered when making a decision about participating in this type of research. Participants would consider the potential benefits to themselves, family members, and their community when making a decision to participate in cancer genetics research. However, concerns about exploitation, distrust of researchers, and investigators' motives were also important to participation decisions. Individuals would also consider who has access to their personal information and what would happen to these data. Side effects, logistical issues, and the potential to gain knowledge about health issues were also described as important factors in decision making. African Americans may consider a number of ethical, legal, and social issues when making a decision to participate in cancer genetics research. These issues should be addressed as part of recruitment efforts.

Participant views and experiences of participating in HIV research in sub-Saharan Africa: a qualitative systematic review.

Science.gov (United States)

Nalubega, Sylivia; Evans, Catrin

2015-06-12

Human immunodeficiency virus clinical trials are increasingly being conducted in sub-Saharan Africa. There is a tension between the pressure to increase levels of research participation and the need to ensure informed consent and protection of participants' rights. Researchers need to be aware of the particular ethical issues that underpin Human immunodeficiency virus research conduct in low income settings. This necessitates hearing from those who have participated in research and who have direct experience of the research process. This review aimed to synthesize and present the best available evidence in relation to Human immunodeficiency virus research participation in sub-Saharan Africa, based on the views and experiences of research participants. The review included studies whose participants were current or former adult Human immunodeficiency virus research participants from sub-Saharan African countries. Views, experiences, attitudes, understandings, perceptions and perspectives of Human immunodeficiency virus research participants in sub-Saharan Africa. Types of studies: This review considered studies that focused on qualitative data, including, but not limited to, designs such as phenomenology, ethnography, grounded theory, action research and feminist research. A three-step search strategy was utilized. Seven databases (CINAHL, Ovid MEDLINE (R) 1946, ASSIA, PsychInfo, Web of Science, EMBASE, and African Index Medicus) were searched with no limitation to years of publication, followed by hand searching of reference lists. Only studies published in the English language were considered. Methodological quality was assessed using the Qualitative Assessment and Review Instrument developed by the Joanna Briggs Institute. Qualitative findings were extracted using the Joanna Briggs Institute Qualitative Assessment and Review Instrument. Qualitative research findings were pooled using a pragmatic meta-aggregative approach and the Joanna Briggs Institute Qualitative

Genomic research and wide data sharing: views of prospective participants.

Science.gov (United States)

Trinidad, Susan Brown; Fullerton, Stephanie M; Bares, Julie M; Jarvik, Gail P; Larson, Eric B; Burke, Wylie

2010-08-01

Sharing study data within the research community generates tension between two important goods: promoting scientific goals and protecting the privacy interests of study participants. This study was designed to explore the perceptions, beliefs, and attitudes of research participants and possible future participants regarding genome-wide association studies and repository-based research. Focus group sessions with (1) current research participants, (2) surrogate decision-makers, and (3) three age-defined cohorts (18-34 years, 35-50, >50). Participants expressed a variety of opinions about the acceptability of wide sharing of genetic and phenotypic information for research purposes through large, publicly accessible data repositories. Most believed that making de-identified study data available to the research community is a social good that should be pursued. Privacy and confidentiality concerns were common, although they would not necessarily preclude participation. Many participants voiced reservations about sharing data with for-profit organizations. Trust is central in participants' views regarding data sharing. Further research is needed to develop governance models that enact the values of stewardship.

Encouraging Volunteer Participation in Health Research: The Role ...

African Journals Online (AJOL)

Health research mainly relies on volunteers to generate data. Volunteer participants not only help provide necessary information to solve problems but also contribute to free participation which in turn helps the research wheel to continue. People mainly contribute to different nonprofit organizations by giving money for ...

People's experiences of suffering a lower limb fracture and undergoing surgery.

Science.gov (United States)

Forsberg, Angelica; Söderberg, Siv; Engström, Åsa

2014-01-01

To describe people's experiences of suffering a lower limb fracture and undergoing surgery, from the time of injury through to the care given at the hospital and recovery following discharge. There is a lack of research on people's experiences of suffering a lower limb fracture and undergoing surgery - from injury to recovery. A qualitative approach was used. Interviews with nine participants were subjected to thematic content analysis. One theme was expressed: from realising the seriousness of the injury to regaining autonomy. Participants described feelings of frustration and helplessness when realising the seriousness of their injury. The wait prior to surgery was a strain and painful experience, and participants needed orientation for the future. They expressed feelings of vulnerability about being in the hands of staff during surgery. After surgery, in the postanaesthesia unit, participants expressed a need to have control and to feel safe in their new situation. To mobilise and regain their autonomy was a struggle, and participants stated that their recovery was extended. Participants found themselves in a new and unexpected situation and experienced pain, vulnerability and a striving for control during the process, that is, 'from realising the seriousness of the injury to regaining autonomy'. How this is managed depends on how the patient's needs are met by nurses. The nursing care received while suffering a lower limb fracture and undergoing surgery should be situation specific as well as individual specific. The safe performance of technical interventions and the nurse's comprehensive explanations of medical terms may help the patient to feel secure during the process. © 2013 John Wiley & Sons Ltd.

Emotion displays and participation in a research workshop

DEFF Research Database (Denmark)

Steensig, Jakob

2013-01-01

. The researchers were supposed to make observations and, simultaneously, build the same structure with the toys as they saw on the video. Research in the field of participatory innovation has suggested that the use of objects may facilitate emotional reactions and that these may enhance participation...... emotions and surprise, in order to see how this affects participation. The analyses confirm that objects provoke emotional reactions, but that this does not necessarily lead to enhanced participation or joint sense making....

Interview and recollection-based research with child disaster survivors: Participation-related changes in emotion and perceptions of participation

Science.gov (United States)

Hambrick, Erin P.; O’Connor, Bridget M.; Vernberg, Eric M.

2015-01-01

Objective Research suggests that some types of trauma research can be conducted safely with children ages 10 and older. The aim of this project was to learn more about potential risks or benefits of conducting research with younger children or with child disaster survivors, specifically about research that includes children providing trauma recollections. Method Fifty 8- to 12-year-old children who experienced a devastating tornado participated in an in-person interview that included both individual and joint (mother-child) recollections of their tornado experiences one year following exposure. These 50 children also rated three emotions at three timepoints and rated their perceptions (e.g., benefit and regret) of research post-participation. Children (N = 28) also participated in phone surveys three months later to assess persistent participation-related emotions and perceptions. Results Child reported emotions worsened from pre- to during participation; however, reports of emotions returned to pre-participation levels post-participation and remained so at the 3-month follow-up. Sixty-four percent of children reported at least some participation benefit and no participation regret immediately post-participation, as did 89.3% at the 3-month follow-up. Four percent of children reported some participation regret (no benefit) post-participation, and 0% three months later. No children requested to stop participating, and none required post-research connection with crisis services. Posttraumatic stress symptom severity, tornado exposure, and age were largely unrelated to child-reported emotions and perceptions of research. Conclusions Results indicate that carefully planned and executed disaster-related research that includes children providing recollections research can be conducted with preadolescents with little risk and some benefit. PMID:26390107

A novice researcher's reflection on recruiting participants for qualitative research.

Science.gov (United States)

Marks, Anne; Wilkes, Lesley; Blythe, Stacy; Griffiths, Rhonda

2017-09-19

This paper is a reflection by a PhD candidate on her qualitative study involving parents, diabetes educators and school teachers who were caring for a child with type 1 diabetes using intensive insulin therapy in primary school. To reflect on a novice researcher's experience of recruiting research participants from community, health and education settings in Australia. Participants were successfully recruited for the study using internet communication tools: Facebook support groups; the Australian Diabetes Educators Association (ADEA) e-newsletter; and emails sent to school principals. These methods were successful as Facebook and online support groups are popular, the study topic was of interest, the ADEA has many members, and numerous emails were sent to schools. Potential barriers to recruitment were a lack of access to those who did not use Facebook or the internet, gatekeepers, the high workloads of diabetes educators and teachers, and the time needed to obtain ethics approval and send a large number of emails to schools. Internet communication tools were successful in recruiting participants from community, health and education settings. However, different approaches were required for each type of participant. Lessons learned from this experience were: the importance of taking time to plan recruitment, including an in-depth understanding of potential participants and recruitment tools, the benefit of being an insider, and the need to work closely with gatekeepers. An understanding of recruitment is essential for ensuring access to appropriate participants and timely collection of data. The experience of the novice researcher may provide insight to others planning to use internet communication tools for recruitment. ©2012 RCN Publishing Company Ltd. All rights reserved. Not to be copied, transmitted or recorded in any way, in whole or part, without prior permission of the publishers.

Regional labour market research on participation rates

NARCIS (Netherlands)

Elhorst, J.P.

1996-01-01

This article reviews the methodology of 17 empirical studies in which the participation rate has been estimated with the help of regional data. After defining and pointing our the orientation of regional labour market research on participation rates, three methodological issues dominate the

Nurses as participants in research: an evaluation of recruitment techniques.

Science.gov (United States)

Luck, Lauretta; Chok, Harrison Ng; Wilkes, Lesley

2017-09-19

Recruitment and retention of participants, as well as response rates, can be challenging in nursing research. This can be because of the questions asked; the choice of methodology; the methods used to collect data; the characteristics of potential participants; the sample size required; and the duration of the study. Additionally, conducting research with nurses as participants presents several issues for them, including the time needed to participate in the research, the competing commitments for clinical practice, the political and environmental climate, and recruitment itself. To report on research studies conducted by the authors at a tertiary teaching hospital, to show the lessons learned when recruiting nurses to participate in nursing research. The authors discuss factors that supported recruitment of nurses in these studies, including the use of the personal touch and multiple recruitment strategies in a single study. Videos and photography facilitate interdisciplinary research and can be a valuable means of non-verbal data collection, especially with participants affected by disabilities, and can support research methods, such as the use of questionnaires. Recruiting nurses for research can be challenging. We suggest that researchers consider using more than one recruitment strategy when recruiting nurse participants. Recruitment is more successful if researchers align the aim(s) of the research with nurse's concerns and contexts. ©2012 RCN Publishing Company Ltd. All rights reserved. Not to be copied, transmitted or recorded in any way, in whole or part, without prior permission of the publishers.

Challenges of youth participation in participatory action research

DEFF Research Database (Denmark)

Wattar, Laila; Fanous, Sandrine; Berliner, Peter

2012-01-01

Paamiut Youth Voice (PYV) is a Participatory Action Research (PAR) project, exploring youth perceptions, experiences, and the promotion of well-being in Paamiut, Greenland. Active youth participation remained a key challenge in the development of the local community through the locally initiated...... community mobilisation programme Paamiut Asasara. The challenges of youth participation in PYV are investigated in order to explore the implications of youth participation in PAR projects. The discussion of challenges is based on a methodological account of experiences from the research process clarifying...

Recruiting Transcultural Qualitative Research Participants: A Conceptual Model

Directory of Open Access Journals (Sweden)

Phyllis Eide

2005-06-01

Full Text Available Working with diverse populations poses many challenges to the qualitative researcher who is a member of the dominant culture. Traditional methods of recruitment and selection (such as flyers and advertisements are often unproductive, leading to missed contributions from potential participants who were not recruited and researcher frustration. In this article, the authors explore recruitment issues related to the concept of personal knowing based on experiences with Aboriginal Hawai'ian and Micronesian populations, wherein knowing and being known are crucial to successful recruitment of participants. They present a conceptual model that incorporates key concepts of knowing the other, cultural context, and trust to guide other qualitative transcultural researchers. They also describe challenges, implications, and concrete suggestions for recruitment of participants.

Improving medical students’ participation in research

Directory of Open Access Journals (Sweden)

Menon R

2018-01-01

Full Text Available Rahul Menon, Vishnou Mourougavelou, Arjun MenonFaculty of Medicine, Imperial College London, London, UKWe read with great interest the review by Siddaiah-Subramanya et al1 regarding the difficulty for medical students to participate in research, in developing countries. From our own experience as medical students, we agree that organizational factors, adequacy of knowledge, and variability in “attitudes” may all contribute to difficulty in participating in research. Nevertheless, we propose that the introduction of research projects, which may be part of an intercalated degree, could help improve medical students’ involvement in research.Author's replyManjunath Siddaiah-Subramanya,1,2 Harveen Singh,3 Kor Woi Tiang1,21Department of Surgery, Logan Hospital, Meadowbrook, 2Department of Medicine, Griffith University, Nathan, 3Department of Gastroenterology, Lady Cilento Children’s Hospital, Brisbane, QLD, Australia We would like to thank Menon et al for the letter in response to our article.1 We note that an overarching theme in the letter is the situation in countries where research at medical school could be improved. In the letter, Menon et al have brought out a couple of important issues: one is that the problem is multifactorial, and the other is the fact that opportunities and encouragement need to be provided to the students so that they could get more involved in research.View the original paper by Siddaiah-Subramanya and colleagues.

Participation in environmental health research by placenta donation - a perception study.

Science.gov (United States)

Lind, Uffe; Mose, Tina; Knudsen, Lisbeth E

2007-11-22

Much environmental health research depends on human volunteers participating with biological samples. The perception study explores why and how people participate in a placenta perfusion study in Copenhagen. The participation implies donation of the placenta after birth and some background information but no follow up. Nineteen semi-structured qualitative interviews were conducted with participants in the placenta perfusion study after donation of placenta. Observation studies were made of recruitment sessions. The interviewed participants are generally in favour of medical research. They participated in the placenta perfusion study due to a belief that societal progress follows medical research. They also felt that participating was a way of giving something back to the Danish health care system. The participants have trust in medical science and scientists, but trust is something which needs to be created through "trust-work". Face-to-face interaction, written information material and informed consent forms play important parts in creating trusting relationships in medical research. Medical research ethics do not only amount to specific types of written information material but should also be seen as a number of trust making performances involving researchers as well as research participants.

Understanding Ethical Issues of Research Participation from the Perspective of Participating Children and Adolescents: A Systematic Review

Science.gov (United States)

Broome, Marion E.

2017-01-01

Background The past twenty years have seen distinct shifts in the way the participation of children and adolescents in research is viewed. This has been emphasized by the growing pediatric research enterprise. Additional information on children’s and adolescents’ experiences during research participation is needed to better inform researchers on the ethical conduct of research with this vulnerable population. Aims The objective of this analysis was to examine ethical issues in research with children and adolescents from their perspective as participants, including: assent, parental consent, risk perception, impact of research participation, and incentives. Methods This systematic review was conducted per the Long et al. framework by means of an iterative searching process. Using the key words ‘research ethics’ and ‘child or pediatric or adolescent’, PubMed, CINAHL, and EBSCOhost databases were searched to identify articles. Limitations placed on the original searches were: English language, year of publication between 2003–2014, humans, abstract available, and age birth–18 years. Findings Twenty-three empiric studies were identified and formed the sample. Included studies represented a diverse range of areas of research, methods, settings, sample demographics, authors, and journals. Discussion Even young children demonstrated the ability to understand essential elements of research, although there is variability in children’s level of understanding. Trust was a significant contributing factor to children’s and adolescents’ participation in research, and also shaped their assessments of risk. Research participation was mainly beneficial for children and adolescents. Incentives were mainly viewed positively, although concerns of possible undue influence were expressed. Linking Evidence to Action This systematic review highlights the importance of including the perspectives of children and adolescents and provides researchers and nurse clinicians

Participants' safety versus confidentiality: A case study of HIV research.

Science.gov (United States)

Leyva-Moral, Juan Manuel; Feijoo-Cid, Maria

2017-05-01

Background When conducting qualitative research, participants usually share lots of personal and private information with the researcher. As researchers, we must preserve participants' identity and confidentiality of the data. Objective To critically analyze an ethical conflict encountered regarding confidentiality when doing qualitative research. Research design Case study. Findings and discussion one of the participants in a study aiming to explain the meaning of living with HIV verbalized his imminent intention to commit suicide because of stigma of other social problems arising from living with HIV. Given the life-threatening situation, the commitment related to not disclosing the participant's identity and/or the content of the interview had to be broken. To avoid or prevent suicide, the therapist in charge of the case was properly informed about the participant's intentions. One important question arises from this case: was it ethically appropriate to break the confidentiality commitment? Conclusion confidentiality could be broken if a life-threatening event is identified during data collection and participants must know that. This has to be clearly stated in the informed consent form.

Nurses' experiences of participation in a research and development programme

DEFF Research Database (Denmark)

Jensen, Kirsten Pryds; Bäck-Pettersson, Siv; Kýlén, Sven

2013-01-01

To describe clinical nurses' experience of participating in a Research and Development (R&D) programme and its influence on their research interest and ability to conduct and apply nursing research......To describe clinical nurses' experience of participating in a Research and Development (R&D) programme and its influence on their research interest and ability to conduct and apply nursing research...

Heuristic decision-making about research participation in children with cystic fibrosis.

Science.gov (United States)

Christofides, Emily; Dobson, Jennifer A; Solomon, Melinda; Waters, Valerie; O'Doherty, Kieran C

2016-08-01

Traditional perspectives on informed consent assume that when faced with decisions about whether to participate in research, individuals behave according to principles of classical rationality, taking into account all available information to weigh risks and benefits to come to a decision that is optimal for them. However, theoretical and empirical research in psychology suggests that people may not make decisions in this way. Less is known about decision-making processes as they pertain to participating in biomedical research, particularly when the participants are children. We sought to better understand research decision processes especially in children who tend to participate extensively in research due to chronic illness. To learn more about children's decision-making in this context, we interviewed 19 young patients with cystic fibrosis (male n = 7; female n = 12) aged 8-18 years (M = 13 years) at a children's hospital in Canada between April and August 2013. We found that participants generally had a default approach to participation decisions, which they attributed to their parents' attitudes to research, experiences of having grown up participating in research, trusting the researchers, and wanting to help. Most of our participants made the decision to participate in research based on a heuristic with a baseline to say "yes", subject to change based on aspects of the research or particular preferences. In particular, concerns with the procedure, unwillingness to talk about cystic fibrosis, logistical challenges, and perceptions of risk all influenced the decision, as did the perceived importance or personal relevance of the research. Our study illustrates that rather than conducting risk/benefit analyses, participants tended to adopt a heuristic-like approach, consistent with decision theories that view heuristic decision-making as ecologically rational. Copyright © 2016 Elsevier Ltd. All rights reserved.

Applying Equity Theory to Students' Perceptions of Research Participation Requirements

Science.gov (United States)

Miles, Shannon R.; Cromer, Lisa DeMarni; Narayan, Anupama

2015-01-01

Human subject pools have been a valuable resource to universities conducting research with student participants. However, the costs and benefits to student participants must be carefully weighed by students, researchers, and institutional review board administrators in order to avoid coercion. Participant perceptions are pivotal in deciding…

Physician participation in clinical research and trials: issues and approaches

Directory of Open Access Journals (Sweden)

Sami F Shaban

2011-03-01

Full Text Available Sayeeda Rahman1, Md Anwarul Azim Majumder1, Sami F Shaban2, Nuzhat Rahman3, Moslehuddin Ahmed4, Khalid Bin Abdulrahman5, Urban JA D’Souza61Department of Clinical Sciences, School of Life Sciences, University of Bradford, West Yorkshire, Bradford, UK; 2Department of Medical Education, Faculty of Medicine and Health Sciences, UAE University, Al-Ain, United Arab Emirates; 3Department of Nutrition Sciences, University of Alabama at Birmingham, Birmingham, AL, USA; 4Department of Community Medicine, Uttara Adhunik Medical College, Dhaka, Bangladesh; 5Department of Family Medicine and Medical Education, College of Medicine, Al-Imam University, Riyadh, Saudi Arabia; 6Department of Post Graduate Studies, School of Medicine, University Malaysia Sabah, Kota Kinabalu, Sabah, MalaysiaAbstract: The rapid development of new drugs, therapies, and devices has created a dramatic increase in the number of clinical research studies that highlights the need for greater participation in research by physicians as well as patients. Furthermore, the potential of clinical research is unlikely to be reached without greater participation of physicians in research. Physicians face a variety of barriers with regard to participation in clinical research. These barriers are system- or organization-related as well as research- and physician-related. To encourage physician participation, appropriate organizational and operational infrastructures are needed in health care institutes to support research planning and management. All physicians should receive education and training in the fundamentals of research design and methodology, which need to be incorporated into undergraduate medical education and postgraduate training curricula and then reinforced through continuing medical education. Medical schools need to analyze current practices of teaching–learning and research, and reflect upon possible changes needed to develop a ‘student-focused teaching–learning and

Considering Actionability at the Participant's Research Setting Level for Anticipatable Incidental Findings from Clinical Research.

Science.gov (United States)

Ortiz-Osorno, Alberto Betto; Ehler, Linda A; Brooks, Judith

2015-01-01

Determining what constitutes an anticipatable incidental finding (IF) from clinical research and defining whether, and when, this IF should be returned to the participant have been topics of discussion in the field of human subject protections for the last 10 years. It has been debated that implementing a comprehensive IF-approach that addresses both the responsibility of researchers to return IFs and the expectation of participants to receive them can be logistically challenging. IFs have been debated at different levels, such as the ethical reasoning for considering their disclosure or the need for planning for them during the development of the research study. Some authors have discussed the methods for re-contacting participants for disclosing IFs, as well as the relevance of considering the clinical importance of the IFs. Similarly, other authors have debated about when IFs should be disclosed to participants. However, no author has addressed how the "actionability" of the IFs should be considered, evaluated, or characterized at the participant's research setting level. This paper defines the concept of "Actionability at the Participant's Research Setting Level" (APRSL) for anticipatable IFs from clinical research, discusses some related ethical concepts to justify the APRSL concept, proposes a strategy to incorporate APRSL into the planning and management of IFs, and suggests a strategy for integrating APRSL at each local research setting. © 2015 American Society of Law, Medicine & Ethics, Inc.

Cross-cultural perspectives on research participation and informed consent.

Science.gov (United States)

Barata, Paula C; Gucciardi, Enza; Ahmad, Farah; Stewart, Donna E

2006-01-01

This study examined Portuguese Canadian and Caribbean Canadian immigrants' perceptions of health research and informed consent procedures. Six focus groups (three in each cultural group) involving 42 participants and two individual interviews were conducted. The focus groups began with a general question about health research. This was followed by three short role-plays between the moderator and the assistant. The role-plays involved a fictional health research study in which a patient is approached for recruitment, is read a consent form, and is asked to sign. The role-plays stopped at key moments at which time focus group participants were asked questions about their understanding and their perceptions. Focus group transcripts were coded in QSR NUDIST software using open coding and then compared across cultural groups. Six overriding themes emerged: two were common in both the Portuguese and Caribbean transcripts, one emphasized the importance of trust and mistrust, and the other highlighted the need and desire for more information about health research. However, these themes were expressed somewhat differently in the two groups. In addition, there were four overriding themes that were specific to only one cultural group. In the Portuguese groups, there was an overwhelming positive regard for the research process and an emphasis on verbal as opposed to written information. The Caribbean participants qualified their participation in research studies and repeatedly raised images of invasive research.

Ethical issues in the qualitative researcher--participant relationship.

Science.gov (United States)

Eide, Phyllis; Kahn, David

2008-03-01

Qualitative research poses ethical issues and challenges unique to the study of human beings. In developing the interpersonal relationship that is critical to qualitative research, investigator and participant engage in a dialogic process that often evokes stories and memories that are remembered and reconstituted in ways that otherwise would not occur. Ethical issues are raised when this relationship not only provides qualitative research data, but also leads to some degree of therapeutic interaction for the participant. The purpose of this article is to examine some of the controversies inherent in the researcher's dilemma when this occurs, set within the context of a nursing caring theory (Swanson), and the International Council of Nurses Code of ethics for nurses, which provides guidance on global nursing practice.

Regaining a sense of agency and shared self-reliance: the experience of advanced disease cancer patients participating in a multidimensional exercise intervention while undergoing chemotherapy--analysis of patient diaries.

Science.gov (United States)

Midtgaard, Julie; Stelter, Reinhard; Rørth, Mikael; Adamsen, Lis

2007-04-01

Evidence is emerging that exercise can reduce psychological distress in cancer patients undergoing treatment. The present study aimed to (qualitatively) explore the experiences of advanced disease cancer patients participating in a 6-week, 9-hours weekly, structured, group-based multidimensional exercise intervention while undergoing chemotherapy. Unstructured diaries from a purposive sample of three females and two males (28-52 years old) who participated in the program served as the database. Data were analyzed using a phenomenological, narrative method. The analysis yielded three themes: shifting position, self-surveillance, and negotiated strength. The intervention highlighted situations making it possible for the participants to negate psychological and physical constraints. The concept of structured exercise contains viable psychotherapeutic potentials by allowing the development of alternative bodily and mental realities complying with cancer patients' demands and abilities to regain autonomy and commitment to discover and adopt a sense of agency and shared self-reliance.

Nurses’ experiences of working in organizations undergoing restructuring: A metasynthesis of qualitative research studies

DEFF Research Database (Denmark)

Sørensen, Dorthe; Jensen, Anne Sofie Bøtcher

2017-01-01

experience working in organizations undergoing structural changes. Design: The review is designed as a metasynthesis and follows the guidelines put forth by Sandelowski and Barroso for synthesizing qualitative research. Data sources: From January to April 2015, literature searches were conducted...... in the CINAHL, PubMed, ProQuest, and Web of Science databases for the period from 1994 to 2014. Review methods: A total of 762 articles were found and screened, 12 of which were included in the review after being appraised using a specially designed reading guide. The inclusion criteria were qualitative studies......Background: Health care organizations worldwide undergo continual reconfiguration and structural changes in order to optimize the use of resources, reduce costs, and improve the quality of treatment. Objective: The objective of this study was to synthesize qualitative studies of how nurses...

Convenient and Live Movement (CALM) for women undergoing breast cancer treatment: Challenges and recommendations for internet-based yoga research.

Science.gov (United States)

Addington, Elizabeth L; Sohl, Stephanie J; Tooze, Janet A; Danhauer, Suzanne C

2018-04-01

To conduct a pilot trial of internet-based, cancer-adapted yoga for women receiving breast cancer treatment. Women undergoing radiation or chemotherapy for breast cancer were recruited for 12, 75-min, biweekly, cancer-adapted yoga classes delivered via internet-based, multipoint videoconferencing. Data were collected on feasibility and acceptability, including qualitative feedback from participants and the yoga instructor. Among 42 women approached, 13 declined eligibility screening, and 23 were ineligible. All 6 women who were eligible provided consent, but 2 withdrew prior to beginning yoga classes. The remaining 4 participants attended 1-11 of 12 online yoga classes. In post-intervention interviews, participants and the instructor agreed that internet-based yoga classes hold great potential for increasing access and improving psychological outcomes in adults with cancer. Qualitative feedback from participants revealed suggestions for future trials of internet-based, cancer-adapted yoga classes, including: continued use of group format; offering more varied class times to accommodate patients' demanding schedules and fluctuating symptoms; enrolling patients after they have acclimated to or completed cancer treatment; streamlining the technology interface; and careful attention to participant burden when designing surveys/forms. The instructor recommended closed session courses, as opposed to rolling enrollment; teaching the same modified poses for all participants, rather than individual tailoring; and using a large screen to allow closer monitoring of students' class experience. Internet delivery may increase patients' access to cancer-adapted yoga classes, but cancer-related and technological barriers remain. This study informs how to optimally design yoga classes, technology, and research procedures to maximize feasibility and acceptability in future trials. Copyright © 2018 Elsevier Ltd. All rights reserved.

Moving beyond 'not enough time': factors influencing paediatric clinicians' participation in research.

Science.gov (United States)

Paget, Simon P; Caldwell, Patrina H Y; Murphy, Joyce; Lilischkis, Kimberley J; Morrow, Angie M

2017-03-01

Increasing the amount of clinical research that occurs in healthcare settings has been identified as an important mechanism to improve healthcare outcomes. While clinicians are key persons in achieving this aim, research participation amongst clinicians is generally limited. To identify the factors (barriers and facilitators) influencing clinician research participation and determine how professional culture impacts on these factors. Forty clinicians working at a tertiary children's hospital participated in six discipline-specific focus groups. Thematic analysis was performed using an inductive process based in grounded theory. Four major themes (cultural factors, personal factors, resources and solutions) and 16 subthemes were identified. Participants described how the current health system discourages clinician research. They reported that their research participation requires personal sacrifice of their own time; income or career progression. Research participation was seen to compete with other priorities in clinicians' workload and is disadvantaged because of the primacy of clinical work and the lack of immediate tangible benefit from research projects. Solutions suggested by our participants included better alignment of clinical and research goals, improved availability of research mentors and collaborative opportunities. Nurses and allied health professionals reported a changing professional culture that values research. Only doctors identified research participation to be important for career progression. For clinician research participation to flourish, significant changes in healthcare structure and priorities will be required that result in research becoming more embedded in healthcare delivery. Initiatives to improve collaboration between clinicians and universities may also support these aims. © 2016 Royal Australasian College of Physicians.

Demand artifact: objectively detecting biased participants in advertising research.

Science.gov (United States)

Miller, Felicia; Schertzer, Susan

2014-12-01

Detecting and reducing the effect of biased participants continues to be an important task for researchers. However, the lack of objective measures to assess demand artifact has made it difficult to effectively address this issue. This paper reports two experiments that apply a theory-based post-experimental inquiry that can systematically identify biased participants in consumer research. The results demonstrate how easily and effectively researchers can incorporate this tool into experimental studies of all types and reduce the likelihood of systematic error.

Increasing global participation in genetics research through DNA barcoding.

Science.gov (United States)

Adamowicz, Sarah J; Steinke, Dirk

2015-12-01

DNA barcoding--the sequencing of short, standardized DNA regions for specimen identification and species discovery--has promised to facilitate rapid access to biodiversity knowledge by diverse users. Here, we advance our opinion that increased global participation in genetics research is beneficial, both to scientists and for science, and explore the premise that DNA barcoding can help to democratize participation in genetics research. We examine publication patterns (2003-2014) in the DNA barcoding literature and compare trends with those in the broader, related domain of genomics. While genomics is the older and much larger field, the number of nations contributing to the published literature is similar between disciplines. Meanwhile, DNA barcoding exhibits a higher pace of growth in the number of publications as well as greater evenness among nations in their proportional contribution to total authorships. This exploration revealed DNA barcoding to be a highly international discipline, with growing participation by researchers in especially biodiverse nations. We briefly consider several of the challenges that may hinder further participation in genetics research, including access to training and molecular facilities as well as policy relating to the movement of genetic resources.

'What do I know? Should I participate?' Considerations on participation in HIV related research among HIV infected adults in Bangalore, South India.

Directory of Open Access Journals (Sweden)

Rashmi J Rodrigues

Full Text Available BACKGROUND: India has the highest number of HIV infected persons in the world after South Africa. Much HIV related behavioral, clinical and laboratory based research is ongoing in India. Yet little is known on Indian HIV patients' knowledge of research, their processes of decision making and motives for participation. We aimed to explore these areas among HIV infected individuals to understand their reasons for participating in research. METHODOLOGY/PRINCIPAL FINDINGS: This is a cross sectional survey among 173 HIV infected adults at a tertiary level hospital in Bangalore, India, done between October 2010 and January 2011. A pre-tested questionnaire was administered to the participants by trained research assistants to assess their knowledge regarding research, willingness to participate, decision making and determinants of participation. Participants were presented with five hypothetical HIV research studies. Each study had a different level of intervention and time commitment. Of respondents, 103(60%, said that research meant 'to discover something new' and 138(80% were willing to participate in research. A third of the respondents were unaware of their right to refuse participation. Willingness to participate in research varied with level of intervention. It was the lowest for the hypothetical study involving sensitive questions followed by the hypothetical drug trial; and was the highest for the hypothetical cross sectional questionnaire based study (p<0.0015. Individual health benefits and altruism were the primary motives for participation in research and indicate the presence of therapeutic misconception. Women were less likely to make autonomous decisions for participation in interventional studies. CONCLUSIONS/SIGNIFICANCE: Despite a majority willing to participate, over a third of respondents did not have any knowledge of research or the voluntary nature of participation. This has ethical implications. Researchers need to focus on

Why do pregnant women participate in research? A patient participation investigation using Q-Methodology.

Science.gov (United States)

Meshaka, Riwa; Jeffares, Stephen; Sadrudin, Farah; Huisman, Nicole; Saravanan, Ponnusamy

2017-04-01

Patient participation in study design is paramount to design studies that are acceptable to patients. Despite an increase in research involving pregnant women, relatively little is known about the motivational factors that govern their decision to be involved in a clinical trial, compared to other patient groups. To better understand the viewpoints of pregnant women who take part in clinical trials. We chose to use Q-Methodology, a method of exploring the structure of opinions surrounding a topic. We developed a set of 40 statements that encompassed the reasons why pregnant women might want to take part in research and 30 research participants from the PRiDE study (an observational trial investigating the role of micronutrients in gestational diabetes) were asked to rank them in order of agreement. The finished matrices from each participant were compared and analysed to produce capturing viewpoints. About 30 women aged 19-40 involved in the PRiDE study completed the questionnaire. There were two overarching motivators that emerged: a willingness to help medical research and improve our knowledge of medical science, and having a personal connection to the disease, therefore a potential fear of being affected by it. A third, less significant viewpoint, was that of a lack of inconvenience being a motivating factor. Understanding what motivates pregnant women to decide to take part in a research study is valuable and helps researchers maximize their uptake and retention rates when designing a trial involving pregnant women. © 2016 The Authors. Health Expectations Published by John Wiley & Sons Ltd.

'What do I know? Should I participate?' Considerations on participation in HIV related research among HIV infected adults in Bangalore, South India.

Science.gov (United States)

Rodrigues, Rashmi J; Antony, Jimmy; Krishnamurthy, Shubha; Shet, Anita; De Costa, Ayesha

2013-01-01

India has the highest number of HIV infected persons in the world after South Africa. Much HIV related behavioral, clinical and laboratory based research is ongoing in India. Yet little is known on Indian HIV patients' knowledge of research, their processes of decision making and motives for participation. We aimed to explore these areas among HIV infected individuals to understand their reasons for participating in research. This is a cross sectional survey among 173 HIV infected adults at a tertiary level hospital in Bangalore, India, done between October 2010 and January 2011. A pre-tested questionnaire was administered to the participants by trained research assistants to assess their knowledge regarding research, willingness to participate, decision making and determinants of participation. Participants were presented with five hypothetical HIV research studies. Each study had a different level of intervention and time commitment. Of respondents, 103(60%), said that research meant 'to discover something new' and 138(80%) were willing to participate in research. A third of the respondents were unaware of their right to refuse participation. Willingness to participate in research varied with level of intervention. It was the lowest for the hypothetical study involving sensitive questions followed by the hypothetical drug trial; and was the highest for the hypothetical cross sectional questionnaire based study (pWomen were less likely to make autonomous decisions for participation in interventional studies. Despite a majority willing to participate, over a third of respondents did not have any knowledge of research or the voluntary nature of participation. This has ethical implications. Researchers need to focus on enabling potential research participants understand the concepts of research, promote autonomous decisions, especially by women and restrict therapeutic misconception.

Factors associated with willingness to participate in biospecimen research among Chinese Americans.

Science.gov (United States)

Gao, Wanzhen; Ma, Grace X; Tan, Yin; Fang, Carolyn; Weaver, JoEllen; Jin, Ming; Lai, Philip

2014-04-01

A paucity of information exists on the recruitment of Asian Americans for biospecimen research. Although studies show that Chinese Americans are at high risk for hepatitis B virus (HBV) infection, little is known about their willingness to participate in HBV-related biospecimen research and how knowledge, attitudes, and cultural factors impact their willingness to participate. The study was guided by Community-Based Participatory Research principles. Data were derived from an assessment study on HBV-related biospecimen research participation among Chinese Americans in the Philadelphia region. The assessment was conducted with 415 Chinese Americans recruited from eight Chinese community-based organizations. Cultural beliefs, knowledge, and attitudes toward biospecimen research were examined for associations with their willingness to participate in biospecimen banking research. Overall, 192 (46.3%) of 415 participants who completed the assessment indicated they were willing to participate if they were invited to donate blood to be frozen and stored for future HBV biospecimen studies. Cultural variables significant in bivariate analysis included collectivism, knowledge about biospecimen research, and Yin-Yang beliefs. Fatalism and individualism were not associated with participation willingness. In multivariate analysis, age, health care attitudes, and trust were significantly associated with willingness to participate in biospecimen banking research. Asian American communities have little knowledge of biospecimen banking and will benefit from educational campaigns that emphasize collective benefits and attitudes towards and trust in the health care system. Understanding cultural factors is important for improving Chinese Americans' knowledge, awareness, and intentions of participation in biospecimen research. Similar efforts need to be undertaken to develop culturally appropriate educational intervention programs to increase participation in biospecimen research

Factors Associated with Willingness to Participate in Biospecimen Research Among Chinese Americans

Science.gov (United States)

Gao, Wanzhen; Tan, Yin; Fang, Carolyn; Weaver, JoEllen; Jin, Ming; Lai, Philip

2014-01-01

A paucity of information exists on the recruitment of Asian Americans for biospecimen research. Although studies show that Chinese Americans are at high risk for hepatitis B virus (HBV) infection, little is known about their willingness to participate in HBV-related biospecimen research and how knowledge, attitudes, and cultural factors impact their willingness to participate. The study was guided by Community-Based Participatory Research principles. Data were derived from an assessment study on HBV-related biospecimen research participation among Chinese Americans in the Philadelphia region. The assessment was conducted with 415 Chinese Americans recruited from eight Chinese community-based organizations. Cultural beliefs, knowledge, and attitudes toward biospecimen research were examined for associations with their willingness to participate in biospecimen banking research. Overall, 192 (46.3%) of 415 participants who completed the assessment indicated they were willing to participate if they were invited to donate blood to be frozen and stored for future HBV biospecimen studies. Cultural variables significant in bivariate analysis included collectivism, knowledge about biospecimen research, and Yin-Yang beliefs. Fatalism and individualism were not associated with participation willingness. In multivariate analysis, age, health care attitudes, and trust were significantly associated with willingness to participate in biospecimen banking research. Asian American communities have little knowledge of biospecimen banking and will benefit from educational campaigns that emphasize collective benefits and attitudes towards and trust in the health care system. Understanding cultural factors is important for improving Chinese Americans' knowledge, awareness, and intentions of participation in biospecimen research. Similar efforts need to be undertaken to develop culturally appropriate educational intervention programs to increase participation in biospecimen research

A partnership model for a reflective narrative for researcher and participant.

Science.gov (United States)

Murphy, Gill; Peters, Kath; Wilkes, Lesley; Jackson, Debra

2016-09-01

Background Conceptual frameworks are important to ensure a clear underpinning research philosophy. Further, the use of conceptual frameworks can support structured research processes. Aim To present a partnership model for a reflective narrative for researcher and participant. Discussion This paper positions the underpinning philosophical framework of the model in social constructionism (the idea that jointly constructed understandings form the basis for shared assumptions) and narrative enquiry. The model has five stages - study design, invitation to share a research space and partnership, a metaphorical research space, building a community story, and reading the community story to others. Core principles of the partnership model are continual reflection by the researcher, potential reflections by participants, reciprocal sharing, and partnership in research. Conclusion A 'trajectory of self' for both participants and researchers can be enhanced within reflective partnerships. Implications for practice This model can be applied to studies that use narrative enquiry and are seeking a humanistic approach with participant engagement.

Financial remuneration for clinical and behavioral research participation: ethical and practical considerations.

Science.gov (United States)

Permuth-Wey, Jennifer; Borenstein, Amy R

2009-04-01

Although the practice of providing payment to clinical research participants has been ongoing for more than a century, it remains an ethically controversial topic among members of the research community. The aims of this commentary are to summarize ethical and practical considerations regarding financial remuneration of research participants and to make recommendations for researchers contemplating this practice. A PubMed search was conducted to explore the ethical implications surrounding financial remuneration and review the body of empiric data on this topic. Financial remuneration is perceived to be ethically acceptable by many researchers and research participants and can be helpful in the recruitment process. It is recommended that when investigators are contemplating whether to offer payment to research participants, they should consider the nature of the study and the potential benefits and risks to the participants, institutional or organizational guidelines, and cultural and societal norms specific to the population being studied. Financial remuneration has the ability to serve as a sign of appreciation for the contributions of research participants and a way to facilitate clinical and behavioral research.

Participant Action Research in Political, Psychological, and Gender Studies

Directory of Open Access Journals (Sweden)

Olga Lucia Obando-Salazar

2006-09-01

Full Text Available Qualitative methodology is used in social and intervention research because it facilitates a deeper analysis of causal factors and development of alternative solutions to social problems. Based on the findings of three studies in the field of political and gender psychology, this article focuses on Participant Action Research (PAR as a useful qualitative approach to deal with social phenomena, such as racism, violence against women, and the problem of children and youth who have been dislocated as the result of armed conflict and sheltered by the Colombian government's program for persons relocated to civil society. This article is composed of three parts. The first part offers historical and theoretical background to the Action Research (AR paradigm, its validation criteria and their meaning for the development of the Latin American rendering of Participant Action Research (PAR. The second part synthesizes trends in the AR approach in the United States and Germany, discusses feminist research and compares these to trends in PAR in Latin America. The third part is a description of Participant Action Research as an intervention method, including features, models, goals, and concepts. URN: urn:nbn:de:0114-fqs060438

The Role of High School Research Experiences in Shaping Students' Research Self-Efficacy and Preparation for Undergraduate Research Participation

Science.gov (United States)

Swan, Amy K.; Inkelas, Karen Kurotsuchi; Jones, Jill N.; Pretlow, Joshua; Keller, Tierney F.

2018-01-01

The effects of undergraduate research participation are well documented, but less is known about students' pathways into undergraduate research participation. This mixed-methods study explored the role of an International Baccalaureate research project in students' development of research self-efficacy in high school, and how this development…

Payment of research participants: current practice and policies of Irish research ethics committees.

LENUS (Irish Health Repository)

Roche, Eric

2013-09-01

Payment of research participants helps to increase recruitment for research studies, but can pose ethical dilemmas. Research ethics committees (RECs) have a centrally important role in guiding this practice, but standardisation of the ethical approval process in Ireland is lacking.

Pharmacists' views on involvement in pharmacy practice research: Strategies for facilitating participation.

Science.gov (United States)

Armour, Carol; Brillant, Martha; Krass, Ines

2007-01-01

In order for community pharmacy practice to continue to evolve, pharmacy practice research on potential new services is essential. This requires the active participation of community pharmacists. At present the level of involvement of community pharmacists in pharmacy practice research is minimal. To ascertain the attitudes of a group of research-experienced community pharmacists towards participating in research; to investigate the barriers and facilitators to participation; to identify potential strategies to increase the involvement of community pharmacists in research. A focus group was conducted with a purposive sample of 11 research-experienced community pharmacists. A pharmacist academic moderated the focus group using a semi-structured interview guide. The participants were asked about their attitudes towards research, previous involvement in research, barriers to their involvement and strategies to overcome these barriers. The session was audio-taped and notes were taken by an observer. Thematic analysis of the notes and audio-tape transcripts was conducted. Three themes emerged around pharmacists' attitudes towards research: pharmacists' perception of the purpose of research, pharmacists' motivation for involvement in research, and pharmacists' desired role in research. Barriers to research participation were grouped into four themes: pharmacists' mindset, communication, infrastructure (time, money and staff), and skills/knowledge. Strategies to address each of these barriers were suggested. Participants recognised the importance of research towards advancing their profession and this was a motivating factor for involvement in research. They perceived their role in research primarily as data collection. A series of practical strategies to overcome the barriers to participation were offered that researchers may wish to consider when promoting research outcomes and designing research projects.

Pharmacists’ views on involvement in pharmacy practice research: Strategies for facilitating participation.

Directory of Open Access Journals (Sweden)

Armour C

2007-06-01

Full Text Available In order for community pharmacy practice to continue to evolve, pharmacy practice research on potential new services is essential. This requires the active participation of community pharmacists. At present the level of involvement of community pharmacists in pharmacy practice research is minimal. Objectives: To ascertain the attitudes of a group of research-experienced community pharmacists towards participating in research; to investigate the barriers and facilitators to participation; to identify potential strategies to increase the involvement of community pharmacists in research. Methods: A focus group was conducted with a purposive sample of 11 research-experienced community pharmacists. A pharmacist academic moderated the focus group using a semi-structured interview guide. The participants were asked about their attitudes towards research, previous involvement in research, barriers to their involvement and strategies to overcome these barriers. The session was audio-taped and notes were taken by an observer. Thematic analysis of the notes and audio-tape transcripts was conducted.Results: Three themes emerged around pharmacists’ attitudes towards research: pharmacists’ perception of the purpose of research, pharmacists’ motivation for involvement in research, and pharmacists’ desired role in research. Barriers to research participation were grouped into four themes: pharmacists’ mindset, communication, infrastructure (time, money and staff, and skills/knowledge. Strategies to address each of these barriers were suggested.Conclusions: Participants recognised the importance of research towards advancing their profession and this was a motivating factor for involvement in research. They perceived their role in research primarily as data collection. A series of practical strategies to overcome the barriers to participation were offered that researchers may wish to consider when promoting research outcomes and designing research

Community-Engaged Strategies to Increase Diversity of Participants in Health Education Research.

Science.gov (United States)

Khubchandani, Jagdish; Balls-Berry, Joyce; Price, James H; Webb, Fern J

2016-05-01

Minorities have historically been underrepresented in health-related research. Several strategies have been recommended to increase the participation of minorities in health-related research. However, most of the recommendations and guidelines apply to research in clinical or laboratory contexts. One of the more prominent methods to enhance minority participation in health-related research that has recently come to the fore is the use of community-engaged strategies. The purpose of this article is to summarize community-engaged outreach efforts that can be translated into useable strategies for health education research teams seeking to diversify the pool of research participants. Also, we provide a succinct overview of the various components of a research endeavor that may influence minority participation in health-related research. Finally, we analyze how health education specialists and SOPHE (Society of Public Health Education) can play a leading role in helping enhance minority participation in health-related research. © 2016 Society for Public Health Education.

Participants' perceptions of research benefits in an African genetic epidemiology study.

Science.gov (United States)

Appiah-Poku, John; Newton, Sam; Kass, Nancy

2011-12-01

  Both the Council for International Organization of Medical Sciences and the Helsinki Declaration emphasize that the potential benefits of research should outweigh potential harms; consequently, some work has been conducted on participants' perception of benefits in therapeutic research. However, there appears to be very little work conducted with participants who have joined non-therapeutic research. This work was done to evaluate participants' perception of benefits in a genetic epidemiological study by examining their perception of the potential benefits of enrollment.   In-depth interviews lasting between 45 and 60 minutes were conducted with a convenient sample of 25 ill patients and 25 healthy accompanying relatives enrolled in a genetic epidemiological study of tuberculosis. Recorded interviews were transcribed and analyzed using content analysis.   Participants perceived that research was beneficial and some of the benefits included the generation of new knowledge, finding the cause of diseases, as well as the control, eradication and prevention of disease. Some thought that research was risky whilst others thought that the benefits outweighed the risks.   Participants perceived research to be beneficial and most of them thought that, though it was risky, the benefits outweighed the risks. It is our view that researchers need to give serious consideration to participant's perception of benefits in designing their consent forms, to see to the fulfillment of achievable goals. © 2011 Blackwell Publishing Ltd.

Risk perception and decision processes underlying informed consent to research participation.

Science.gov (United States)

Reynolds, William W; Nelson, Robert M

2007-11-01

According to the rational choice model, informed consent should consist of a systematic, step-by-step evaluation of all information pertinent to the treatment or research participation decision. Research shows that people frequently deviate from this normative model, however, employing decision-making shortcuts, or heuristics. In this paper we report findings from a qualitative study of 32 adolescents and (their) 31 parents who were recruited from two Northeastern US hospitals and asked to consider the risks of and make hypothetical decisions about research participation. The purpose of this study was to increase our understanding of how diabetic and at-risk adolescents (i.e., those who are obese and/or have a family history of diabetes) and their parents perceive risks and make decisions about research participation. Using data collected from adolescents and parents, we identify heuristic decision processes in which participant perceptions of risk magnitude, which are formed quickly and intuitively and appear to be based on affective responses to information, are far more prominent and central to the participation decision than are perceptions of probability. We discuss participants' use of decision-making heuristics in the context of recent research on affect and decision processes, and we consider the implications of these findings for researchers.

Feasibility study of a randomized controlled trial of a telephone-delivered problem-solving-occupational therapy intervention to reduce participation restrictions in rural breast cancer survivors undergoing chemotherapy.

Science.gov (United States)

Hegel, Mark T; Lyons, Kathleen D; Hull, Jay G; Kaufman, Peter; Urquhart, Laura; Li, Zhongze; Ahles, Tim A

2011-10-01

Breast cancer patients receiving adjuvant chemotherapy often experience functional effects of treatment that limit participation in life activities. The purpose of this study was to examine the feasibility of conducting a randomized controlled trial (RCT) of a novel intervention for these restrictions, determine acceptability of the intervention, and preliminarily assess its effects. A pilot RCT of a telephone-delivered Problem-solving and Occupational Therapy intervention (PST-OT) to improve participation restrictions in rural breast cancer patients undergoing chemotherapy. Thirty-one participants with Stages 1-3 breast cancer were randomized to 6 weekly sessions of PST-OT (n = 15) and usual care (n = 16). The primary study outcome was the feasibility of conducting the trial. Secondary outcomes were functional, quality of life and emotional status as assessed at baseline, 6 and 12 weeks. Of 46 patients referred 31 were enrolled (67% recruitment rate), of which 6 participants withdrew (81% retention rate). Twenty-four participants completed all study-related assessments (77%). Ninety-two percent of PST-OT participants were highly satisfied with the intervention, and 92% reported PST-OT to be helpful/very helpful for overcoming participation restrictions. Ninety-seven percent of planned PST-OT treatment sessions were completed. Completion rates for PST-OT homework tasks were high. Measures of functioning, quality of life, and emotional state favored the PST-OT condition. This pilot study suggests that an RCT of the PST-OT intervention is feasible to conduct with rural breast cancer patients undergoing adjuvant chemotherapy and that PST-OT may have positive effects on function, quality of life, and emotional state. 2010 John Wiley & Sons, Ltd.

Access, entry and researcher-participant position

DEFF Research Database (Denmark)

Louw, Arnt Vestergaard

2015-01-01

This article reports on methodological experiences obtained in an anthropologically inspired qualitative study among students of carpentry in Denmark. On the one hand the article deals with methodological issues of doing anthropological research among students of carpentry, while on the other...... it deals with the research findings that such a research design produced. As well as the methodological issues of researcher access, entry and participant position in the field, this article reports on the following questions: What kinds of implicit expectations of the students are embedded in the way...... the school introduces and initiates the programme? What kinds of effects does this have on the motivation of the students? How do the terms and professional language of the profession work on the individual students in including and excluding ways? These specific descriptions of classroom pedagogy, inspired...

Predictors of seizure outcomes in children with tuberous sclerosis complex and intractable epilepsy undergoing resective epilepsy surgery: an individual participant data meta-analysis.

Directory of Open Access Journals (Sweden)

Aria Fallah

Full Text Available OBJECTIVE: To perform a systematic review and individual participant data meta-analysis to identify preoperative factors associated with a good seizure outcome in children with Tuberous Sclerosis Complex undergoing resective epilepsy surgery. DATA SOURCES: Electronic databases (MEDLINE, EMBASE, CINAHL and Web of Science, archives of major epilepsy and neurosurgery meetings, and bibliographies of relevant articles, with no language or date restrictions. STUDY SELECTION: We included case-control or cohort studies of consecutive participants undergoing resective epilepsy surgery that reported seizure outcomes. We performed title and abstract and full text screening independently and in duplicate. We resolved disagreements through discussion. DATA EXTRACTION: One author performed data extraction which was verified by a second author using predefined data fields including study quality assessment using a risk of bias instrument we developed. We recorded all preoperative factors that may plausibly predict seizure outcomes. DATA SYNTHESIS: To identify predictors of a good seizure outcome (i.e. Engel Class I or II we used logistic regression adjusting for length of follow-up for each preoperative variable. RESULTS: Of 9863 citations, 20 articles reporting on 181 participants were eligible. Good seizure outcomes were observed in 126 (69% participants (Engel Class I: 102(56%; Engel class II: 24(13%. In univariable analyses, absence of generalized seizure semiology (OR = 3.1, 95%CI = 1.2-8.2, p = 0.022, no or mild developmental delay (OR = 7.3, 95%CI = 2.1-24.7, p = 0.001, unifocal ictal scalp electroencephalographic (EEG abnormality (OR = 3.2, 95%CI = 1.4-7.6, p = 0.008 and EEG/Magnetic resonance imaging concordance (OR = 4.9, 95%CI = 1.8-13.5, p = 0.002 were associated with a good postoperative seizure outcome. CONCLUSIONS: Small retrospective cohort studies are inherently prone to bias, some of which are overcome using individual participant data. The

Political Ideology, Confidence in Science, and Participation in Alzheimer Disease Research Studies.

Science.gov (United States)

Gabel, Matthew; Gooblar, Jonathan; Roe, Catherine M; Selsor, Natalie J; Morris, John C

2018-01-18

Americans' confidence in science varies based on their political ideology. This ideological divide has potentially important effects on citizens' engagement with and participation in clinical studies of Alzheimer disease (AD). A probability sample of 1583 Americans was surveyed about their willingness to participate in longitudinal AD research and about their political attitudes. These survey results were compared with a survey of 382 participants in a longitudinal AD study at the Knight Alzheimer Disease Research Center. Among Americans, more conservative ideology decreases willingness to participate in a hypothetical longitudinal cohort study of AD both directly and through its negative effect on confidence in science. The Knight Alzheimer Disease Research Center study participants expressed more liberal ideology and greater confidence in science than Americans in general. Of the survey respondents opposed to participation, over a quarter changed to neutral or positive if the study returned their research results to them. Clinical studies of AD are likely biased toward participants who are more liberal and have higher confidence in science than the general population. This recruitment bias may be reduced by lowering the trust demanded of participants through measures such as returning research results to participants.

Worldwide Research, Worldwide Participation: Web-Based Test Logger

Science.gov (United States)

Clark, David A.

1998-01-01

Thanks to the World Wide Web, a new paradigm has been born. ESCORT (steady state data system) facilities can now be configured to use a Web-based test logger, enabling worldwide participation in tests. NASA Lewis Research Center's new Web-based test logger for ESCORT automatically writes selected test and facility parameters to a browser and allows researchers to insert comments. All data can be viewed in real time via Internet connections, so anyone with a Web browser and the correct URL (universal resource locator, or Web address) can interactively participate. As the test proceeds and ESCORT data are taken, Web browsers connected to the logger are updated automatically. The use of this logger has demonstrated several benefits. First, researchers are free from manual data entry and are able to focus more on the tests. Second, research logs can be printed in report format immediately after (or during) a test. And finally, all test information is readily available to an international public.

Participation in environmental health research by placenta donation - a perception study

DEFF Research Database (Denmark)

Lind, Uffe; Mose, Tina; Knudsen, Lisbeth E

2007-01-01

background information but no follow up. METHODS: Nineteen semi-structured qualitative interviews were conducted with participants in the placenta perfusion study after donation of placenta. Observation studies were made of recruitment sessions. RESULTS: The interviewed participants are generally in favour......, but trust is something which needs to be created through "trust-work". Face-to-face interaction, written information material and informed consent forms play important parts in creating trusting relationships in medical research. CONCLUSION: Medical research ethics do not only amount to specific types......BACKGROUND: Much environmental health research depends on human volunteers participating with biological samples. The perception study explores why and how people participate in a placenta perfusion study in Copenhagen. The participation implies donation of the placenta after birth and some...

Is a "wage-payment" model for research participation appropriate for children?

Science.gov (United States)

Bagley, Stephen J; Reynolds, William W; Nelson, Robert M

2007-01-01

Our goal was to evaluate the applicability of a "wage-payment" model to inducements for children to participate in research. We interviewed 42 children and adolescents between the ages of 4 and 16 years who had diabetes, asthma, seizures, or no chronic medical condition. The interview explored hypothetical participation decisions for up to 4 research scenarios. To evaluate factors that would influence children and adolescents' decision-making for research participation, we probed for the impact of monetary and other incentives. The interviews were transcribed and coded for specific themes related to money or other rewards and incentives. Older children, mainly those >9 years of age, showed an appreciation for the role and value of money through (a) an accurate concept of the material value of money in society or (b) asking for a realistic amount of money in exchange for their research participation. Younger children, primarily those payment model for compensating older children (>9 years of age) and adolescents for the time and effort of research participation is appropriate because they generally understand the meaning and value of a wage.

Decision-making and motivation to participate in biomedical research in southwest Nigeria.

Science.gov (United States)

Osamor, Pauline E; Kass, Nancy

2012-08-01

Motivations and decision-making styles that influence participation in biomedical research vary across study types, cultures, and countries. While there is a small amount of literature on informed consent in non-western cultures, few studies have examined how participants make the decision to join research. This study was designed to identify the factors motivating people to participate in biomedical research in a traditional Nigerian community, assess the degree to which participants involve others in the decision-making process, and examine issues of autonomy in decision-making for research. A descriptive cross-sectional study was conducted with 100 adults (50 men, 50 women) in an urban Nigerian community who had participated in a biomedical research study. Subjects were interviewed using a survey instrument. Two-thirds of the respondents reported participating in the biomedical study to learn more about their illness, while 30% hoped to get some medical care. Over three-quarters (78%) of participants discussed the enrollment decision with someone else and 39% reported obtaining permission from a spouse or family member to participate in the study. Women were more than twice as likely as men to report obtaining permission from someone else before participating. More specifically, half of the female participants reported seeking permission from a spouse before enrolling. The findings suggest that informed consent in this community is understood and practised as a relational activity that involves others in the decision making process. Further studies are needed in non-Western countries concerning autonomy, decision-making, and motivation to participate in research studies. © 2012 Blackwell Publishing Ltd.

Why female sex workers participate in HIV research: the illusion of voluntariness.

Science.gov (United States)

Reed, Elizabeth; Fisher, Celia B; Blankenship, Kim M; West, Brooke S; Khoshnood, Kaveh

2017-07-01

The purpose of this study was to examine factors influencing the motivation for and perceived voluntariness of participation in non-intervention HIV research among female sex workers (FSW) in India. FSW (n = 30) who participated in non-intervention HIV studies in the previous three years were recruited from a local community-based organization. Semi-structured qualitative interviews focused on women's personal and economic motivations for participation and their perceptions of the informed consent process. Interviews were audio-recorded, translated, transcribed, and reviewed for common themes. Content analysis indicated that while many women reported willing participation, reports of obligatory participation were also a common theme. Obligations included money-related pressures and coercion by other FSW, social pressures, not wanting to disappoint the researchers, and perceiving that they had a contractual agreement to complete participation as a result of signing the consent form. Findings suggest a need for additional efforts during and following informed consent to prevent obligatory participation in HIV research studies among FSW. Findings emphasize the importance of integrating ongoing participant feedback into research ethics practices to identify issues not well addressed via standard ethics protocols when conducting HIV research among vulnerable populations.

Ethical Considerations in Research Participation Virality.

Science.gov (United States)

Ellis-Barton, Carol

2016-07-01

This article seeks to commence and encourage discussion around the upcoming ethical challenges of virality in network structures. When the call for participation in a research project on lupus in Ireland went from an advertisement in a newsletter to a meme (unit of transmissible information) on a closed Facebook page, the ethical considerations of virality were raised. The article analyzes the Association of Internet Researchers guidelines, Facebook policies, and the context of privacy in relation to virality. Virality creates the leverage for methodological pluralism. The nature of the inquiry can determine the method rather than the other way around. Viral ethical considerations are evolving due to the cyber world becoming the primary meme of communication, with flexibility in the researcher's protocol providing opportunities for efficient, cost-effective, and diverse recruitment. © The Author(s) 2016.

Protecting vulnerable research participants: a Foucault-inspired analysis of ethics committees.

Science.gov (United States)

Juritzen, Truls I; Grimen, Harald; Heggen, Kristin

2011-09-01

History has demonstrated the necessity of protecting research participants. Research ethics are based on a concept of asymmetry of power, viewing the researcher as powerful and potentially dangerous and establishing ethics committees as external agencies in the field of research. We argue in favour of expanding this perspective on relationships of power to encompass the ethics committees as one among several actors that exert power and that act in a relational interplay with researchers and participants. We employ Michel Foucault's ideas of power as an omnipresent force which is dynamic and unstable, as well as the notion that knowledge and power are inextricably intertwined. The article discusses how research ethics committees may affect academic freedom. In addition it is pointed out that research participants could be harmed - not only by unfortunate research practices, but also by being subjected to the protective efforts of ethics monitoring bodies.

Regulating hematology/oncology research involving human participants.

Science.gov (United States)

Kapp, Marshall B

2002-12-01

The conduct of hematology/oncology research, particularly clinical trials involving human participants, is an extensively regulated enterprise. Professionals in the specialty of hematology/oncology have important stakes in the success of biomedical research endeavors. Knowledge about and compliance strategies regarding the pertinent regulatory parameters are essential for avoiding negative legal repercussions for involved professionals. At the same time, there is a need to be aware of and actively resist the danger that strong [legal] protectionism might inadvertently result in undermining physician investigators' sense of personal moral responsibility in the conduct of human experiments. For all the limitations of that virtue in the protection of human subjects, it is surely not one that we would want medical scientists to be without [47]. Members of the potential participant pool, financial sponsors, and the general public must be convinced that everyone involved in the research enterprise is committed to operating within acceptable legal and ethical boundaries if the atmosphere of confidence and trust that is indispensable to the continued process and progress of investigation aimed at extending and improving quality of life for all of us in the future is to continue and flourish [48].

Researchers’ participation in and motivations for engaging with research information management systems

Science.gov (United States)

Wu, Shuheng; Lee, Dong Joon

2018-01-01

Researchers’ participation in online RIMSs This article examined how researchers participated in research information management systems (RIMSs), their motivations for participation, and their priorities for those motivations. Profile maintenance, question-answering, and endorsement activities were used to define three cumulatively increasing levels of participation: Readers, Record Managers, and Community Members. Junior researchers were more engaged in RIMSs than were senior researchers. Postdocs had significantly higher odds of endorsing other researchers for skills and being categorized as Community Members than did full and associate professors. Assistant professors were significantly more likely to be Record Managers than were members of any other seniority categories. Finally, researchers from the life sciences showed a significantly higher propensity for being Community Members than Readers and Record Managers when compared with researchers from engineering and the physical sciences, respectively. Researchers’ motivations to participate in RIMSs When performing activities, researchers were motivated by the desire to share scholarship, feel competent, experience a sense of enjoyment, improve their status, and build ties with other members of the community. Moreover, when researchers performed activities that directly benefited other members of a RIMS, they assigned higher priorities to intrinsic motivations, such as perceived self-efficacy, enjoyment, and building community ties. Researchers at different stages of their academic careers and disciplines ranked some of the motivations for engaging with RIMSs differently. The general model of research participation in RIMSs; the relationships among RIMS activities; the motivation scales for activities; and the activity, seniority, and discipline-specific priorities for the motivations developed by this study provide the foundation for a framework for researcher participation in RIMSs. This framework can be

Let's Play it Safe: Ethical Considerations from Participants in a Photovoice Research Project

Directory of Open Access Journals (Sweden)

Karin Hannes PhD

2014-02-01

Full Text Available The use of images and other visual data in qualitative research projects poses new ethical challenges, particularly in the context of participatory research projects that engage research participants in conducting fieldwork. Little is known about how research participants deal with the ethical challenges involved in conducting fieldwork, or whether they succeed in making balanced ethical judgments in collecting images of identifiable people and places. This study aims to increase our understanding of these ethical challenges. From an inductive analysis of interview data generated from nine participants recently involved in a photovoice research project we conclude that raising awareness about ethical aspects of conducting visual research increases research participants' sensitivity toward ethical issues related to privacy, anonymity, and confidentiality of research subjects. However, personal reasons (e.g., cultural, emotional and cautions about potential ethical dilemmas also prompt avoidance behavior. While ethics sessions may empower participants by equipping them with the knowledge of research ethics, ethics sessions may also have an unintentional impact on research.

Clinical feasibility of pre-operative neurodevelopmental assessment of infants undergoing open heart surgery.

Science.gov (United States)

Campbell, Miranda; Rabbidge, Bridgette; Ziviani, Jenny; Sakzewski, Leanne

2017-08-01

Assessing the neurodevelopmental status of infants with congenital heart disease before surgery provides a means of identifying those at heightened risk of developmental delay. This study aimed to investigate factors impacting clinical feasibility of pre-operative neurodevelopmental assessment of infants undergoing early open heart surgery. Infants who underwent open heart surgery prior to 4 months of age participated in this cross-sectional study. The Test of Infant Motor Performance and Prechtl's Assessment of General Movements were undertaken on infants pre-operatively. When assessments could not be undertaken, reasons were ascribed to either infant or environmental circumstances. Demographic data and Aristotle scores were compared between groups of infants who did or did not undergo assessment. Binary logistic regression was used to explore associations. A total of 60 infants participated in the study. Median gestational age was 38.78 weeks (interquartile range: 36.93-39.72). Of these infants, 37 (62%) were unable to undergo pre-operative assessment. Twenty-four (40%) could not complete assessment due to infant-related factors and 13 (22%) due to environmental-related factors. For every point increase in the Aristotle Patient-Adjusted Complexity score, the infants likelihood of being unable to undergo assessment increased by 35% (odds ratio: 0.35; 95% confidence interval: 1.03-1.77, P = 0.03). Over half of the infants undergoing open heart surgery were unable to complete pre-operative neurodevelopmental assessment. The primary reason for this was infant-related medical instability. Findings suggest further research is warranted to investigate whether the Aristotle Patient-Adjusted Complexity score might serve as an indicator to inform developmental surveillance with this medically fragile cohort. © 2017 Paediatrics and Child Health Division (The Royal Australasian College of Physicians).

Low participation rates amongst Asian women: implications for research in reproductive medicine.

Science.gov (United States)

Talaulikar, V S; Hussain, S; Perera, A; Manyonda, I T

2014-03-01

The last two decades have witnessed tremendous advances in the field of reproductive medicine, especially assisted reproductive technology and stem cell research. As research continues in future, it is vital to ensure that individuals from all ethnic backgrounds are represented in the study populations so that the findings of the research can be generalised for the benefit of all. Many studies, however, have noted a trend of low participation rates amongst Asian women in reproductive research. Inequalities in the ethnicity of research participants can be a source of substantial bias, and have major ethical and scientific ramifications. Several factors such as educational status, fear of wrong-doing, communication barriers, and socio-cultural beliefs have been suggested to play a role. There is a need for further exploration of the factors influencing Asian women's decision to accept or decline participation in reproductive research and for development of effective targeted strategies for research recruitment with the aim of encouraging research participation as well as donation of cryopreserved embryos or other reproductive tissues. Copyright © 2013 Elsevier Ireland Ltd. All rights reserved.

Communication of Biobanks' Research Results : What Do (Potential) Participants Want?

NARCIS (Netherlands)

Meulenkamp, Tineke M.; Gevers, Sjef K.; Bovenberg, Jasper A.; Koppelman, Gerard H.; Vlieg, Astrid van Hylckama; Smets, Ellen M. A.

2010-01-01

The aim of this study was to investigate (potential) research participants' (a) information preferences with regard to receiving biobanks' genetic research results, and (b) attitudes towards the duties of researchers to communicate research results. A total group of 1,678 was analyzed, consisting of

Communication of Biobanks' Research Results: What Do (Potential) Participants Want?

NARCIS (Netherlands)

Meulenkamp, Tineke M.; Gevers, Sjef K.; Bovenberg, Jasper A.; Koppelman, Gerard H.; van Hylckama Vlieg, Astrid; Smets, Ellen M. A.

2010-01-01

The aim of this study was to investigate (potential) research participants' (a) information preferences with regard to receiving biobanks' genetic research results, and (b) attitudes towards the duties of researchers to communicate research results. A total group of 1,678 was analyzed, consisting of

Communication of biobanks’ research results: what do (potential) participants want?

NARCIS (Netherlands)

Meulenkamp, T.M.; Gevers, S.K.; Bovenberg, J.A.; Koppelman, G.H.; Hylckama Vlieg, A. van; Smets, E.M.A.

2010-01-01

The aim of this study was to investigate (potential) research participants' (a) information preferences with regard to receiving biobanks' genetic research results, and (b) attitudes towards the duties of researchers to communicate research results. A total group of 1,678 was analyzed, consisting of

Accessing Fellow Academics as Research Participants: Constraints, Collegiality, and “Academic Citizenship”

Directory of Open Access Journals (Sweden)

Yongyan Li

2015-06-01

Full Text Available In this paper I discuss some constraints and implications in accessing fellow academics as research participants, a topic that has rarely been addressed thus far in the literature. I will point out that a lack of cooperation from fellow academics may defeat our research purposes, and will survey some studies involving U.S., European, and Chinese academics as research participants to illustrate education researchers’ efforts to work with fellow academics against the odds. By referencing my personal experience of engaging with Chinese academics, I will then discuss the role of personal contacts in research and reflect upon various constraints in accessing fellow academics as research participants. I will suggest that, when we do participate in a fellow researcher’s project, the incentive is a desire to support our peers in the spirit of “academic citizenship.”

Participants' perception of pharmaceutical clinical research: a cross-sectional controlled study

Directory of Open Access Journals (Sweden)

González-Saldivar G

2016-04-01

Full Text Available Gerardo González-Saldivar,1 René Rodríguez-Gutiérrez,2 José Luis Viramontes-Madrid,3 Alejandro Salcido-Montenegro,2 Kevin Erick Gabriel Carlos-Reyna,2 Andrés Marcelo Treviño-Alvarez,2 Neri Alejandro Álvarez-Villalobos,4 José Gerardo González-González2 1Ophthalmology Department, 2Endocrinology Division, Hospital Universitario “Dr. José E. González”, Facultad de Medicina, Universidad Autónoma de Nuevo León, Monterrey, Nuevo León, 3Instituto Nacional de Salud Pública, Cuernavaca, Morelos, 4Medical Statistics Department, Hospital Universitario “Dr. José E. González”, Facultad de Medicina, Universidad Autónoma de Nuevo León, Monterrey, Nuevo León, Mexico Background: There is scarce scientific information assessing participants’ perception of pharmaceutical research in developed and developing countries concerning the risks, safety, and purpose of clinical trials.Methods: To assess the perception that 604 trial participants (cases and 604 nonparticipants (controls of pharmaceutical clinical trials have about pharmaceutical clinical research, we surveyed participants with one of four chronic diseases from 12 research sites throughout Mexico.Results: Participation in clinical trials positively influences the perception of pharmaceutical clinical research. More cases (65.4% than controls (50.7% perceived that the main purpose of pharmaceutical research is to cure more diseases and to do so more effectively. In addition, more cases considered that there are significant benefits when participating in a research study, such as excellent medical care and extra free services, with this being the most important motivation to participate for both groups (cases 52%, controls 54.5%. We also found a sense of trust in their physicians to deal with adverse events, and the perception that clinical research is a benefit to their health, rather than a risk. More controls believed that clinical trial participants’ health is put at risk

A Personal Touch: The Most Important Strategy for Recruiting Latino Research Participants.

Science.gov (United States)

García, Alexandra A; Zuñiga, Julie A; Lagon, Czarina

2017-07-01

People from non-White racial groups and other underserved populations, including Latinos, are frequently reluctant to participate in research. Yet their participation into research is foundational to producing information that researchers and health care providers need to address health disparities. The purpose of this article is to describe challenges we have encountered along with culturally relevant strategies we used in five research studies to recruit Mexican American participants from community settings, some of whom were also of low socioeconomic status. We found that the most effective recruitment strategies reflect the common cultural values of personalismo, simpátia, confianza, respeto, and familismo.

Protection of the human research participant: A structured review

African Journals Online (AJOL)

related or social-science research involves a human participant. This ... quantitative studies, as well as review articles, were included, to enhance ... In the study by Gremillion et al.,[7] comparison was made between .... research stakeholders, who took part in interviews and focus- .... Contact persons ... Face to face.

Interviewing Objects: Including Educational Technologies as Qualitative Research Participants

Science.gov (United States)

Adams, Catherine A.; Thompson, Terrie Lynn

2011-01-01

This article argues the importance of including significant technologies-in-use as key qualitative research participants when studying today's digitally enhanced learning environments. We gather a set of eight heuristics to assist qualitative researchers in "interviewing" technologies-in-use (or other relevant objects), drawing on concrete…

Understanding stakeholder participation in research as part of sustainable development.

Science.gov (United States)

Bell, Simon; Morse, Stephen; Shah, Rupesh A

2012-06-30

Participation is often presented as a 'good' thing and a fairer way to represent views and opinions outside narrow confines of interest and expertise. However, the roots of participatory approaches within research contexts are deep and numerous twists and turns demonstrate a confused and possibly confusing morphology with significant gaps and weaknesses. In this paper 'via the medium' of the POINT (Policy Influence of Indicators) research project we trace elements of the recent history of group participation in sustainable development and the emergence of focus on four areas, most significantly how participatory methods are used. In the absence of strong evidence to contrary we suggest that the issue of how participants engage in participation remains a significant weakness for the field. In order to counter the apparent gap we suggest that a certain degree of structure and process can provide the oeuvre of participatory approaches with a higher degree of transparency in the research process and, by focus on the use of a method called Triple Task, group participatory events can be encouraged to yield greater insights into the workings of groups of all kinds. Copyright © 2012 Elsevier Ltd. All rights reserved.

Ethics is for human subjects too: participant perspectives on responsibility in health research.

Science.gov (United States)

Cox, Susan M; McDonald, Michael

2013-12-01

Despite the significant literature as well as energy devoted to ethical review of research involving human subjects, little attention has been given to understanding the experiences of those who volunteer as human subjects. Why and how do they decide to participate in research? Is research participation viewed as a form of social responsibility or as a way of obtaining individual benefits? What if anything do research subjects feel they are owed for participation? And what do they feel that they owe the researcher? Drawing on in-depth individual interviews conducted in 2006 and 2007 with 41 subjects who participated in a variety of types of health research in Canada, this paper focuses on subject perspectives on responsibility in research. Highlighting the range of ways that subjects describe their involvement in research and commitments to being a 'good' subject, we present a typology of narratives that sheds new light on the diverse meanings of research participation. These narratives are not mutually exclusive or prescriptive but are presented as ideal types typifying a set of circumstances and values. As such, they collectively illuminate a range of motivations expressed by human subjects as well as potential sources of vulnerability. The typology adds a new dimension to the literature in this area and has significant implications for researchers seeking more human-subject centred approaches to research recruitment and retention, as well as research ethics boards trying to better anticipate the perspectives of prospective participants. Copyright © 2013 Elsevier Ltd. All rights reserved.

75 FR 6671 - Agency Forms Undergoing Paperwork Reduction Act Review

Science.gov (United States)

2010-02-10

... programs implemented a new consent form. This form asked participants for permission for CDC to contact...] Agency Forms Undergoing Paperwork Reduction Act Review The Centers for Disease Control and Prevention... prevention behaviors, CDC will conduct telephone interviews of 425 Matter of Balance program participants six...

Surrogate receptivity to participation in critical illness genetic research: aligning research oversight and stakeholder concerns.

Science.gov (United States)

Freeman, Bradley D; Butler, Kevin; Bolcic-Jankovic, Dragana; Clarridge, Brian R; Kennedy, Carie R; LeBlanc, Jessica; Chandros Hull, Sara

2015-04-01

Collection of genetic biospecimens as part of critical illness investigations is increasingly commonplace. Oversight bodies vary in restrictions imposed on genetic research, introducing inconsistencies in study design, potential for sampling bias, and the possibility of being overly prohibitive of this type of research altogether. We undertook this study to better understand whether restrictions on genetic data collection beyond those governing research on cognitively intact subjects reflect the concerns of surrogates for critically ill patients. We analyzed survey data collected from 1,176 patients in nonurgent settings and 437 surrogates representing critically ill adults. Attitudes pertaining to genetic data (familiarity, perceptions, interest in participation, concerns) and demographic information were examined using univariate and multivariate techniques. We explored differences among respondents who were receptive (1,333) and nonreceptive (280) to genetic sample collection. Whereas factors positively associated with receptivity to research participation were "complete trust" in health-care providers (OR, 2.091; 95% CI, 1.544-2.833), upper income strata (OR, 2.319; 95% CI, 1.308-4.114), viewing genetic research "very positively" (OR, 3.524; 95% CI, 2.122-5.852), and expressing "no worry at all" regarding disclosure of results (OR, 2.505; 95% CI, 1.436-4.369), black race was negatively associated with research participation (OR, 0.410; 95% CI, 0.288-0.585). We could detect no difference in receptivity to genetic sample collection comparing ambulatory patients and surrogates (OR, 0.738; 95% CI, 0.511-1.066). Expressing trust in health-care providers and viewing genetic research favorably were associated with increased willingness for study enrollment, while concern regarding breach of confidentiality and black race had the opposite effect. Study setting had no bearing on willingness to participate.

Public Libraries, Museums and User Participation - An outline of a research projeckt

DEFF Research Database (Denmark)

Jochumsen, Henrik; Rasmussen, Casper Hvenegaard

2013-01-01

The aim of this paper is to sketch a research project on user participation in public libraries and museums. For several years’ user participation, participatory culture and user driven innovation have been “buzzwords” in the ongoing development of cultural institutions in general and in museums...... of the research project. The case of Roskilde is particularly illustrative as it not only contains user participation, libraries and museums but also illustrate how the development of user participation actually blurs the borders of the two institutions. After a definition of the concept of user participation...... and a brief discussion of the institutional and political relevance of doing research into the field, we will pinpoint some challenges that both libraries and museums are facing so as to emphasize the importance of studying how the increasing focus on user development is expressed in both institutions...

“I Just Don't Think There's any other Image that Tells the Story like [This] Picture Does”: Researcher and Participant Reflections on the Use of Participant-Employed Photography in Social Research

Directory of Open Access Journals (Sweden)

Meridith Burles PhD

2014-02-01

Full Text Available The incorporation of visual forms of expression has become common in qualitative research over the past two decades, with participant-employed photography being most prevalent. Visual methods such as photovoice have been used in community-based studies and with individuals to explore their lived experiences, particularly because of their participatory nature. Despite widespread support for visual approaches in existing research, there has been insufficient attention paid to how photography can enhance understanding of the phenomenon under study. Additionally, the existing literature is somewhat bereft of discussion of what individuals think about their participation in studies that incorporate participant-employed photography, or researchers' perspectives of carrying out this type of research. In this article, we describe a photovoice study carried out with young adult women affected by serious illness and provide examples of participants' photographs to illustrate how participant-employed photography can enhance the depth of research data. Specifically, the examples highlight how the photographs enriched participants' verbal descriptions of their lived experiences, which generated a better understanding of their personal embodied realities. We also discuss the young adult women's inclusion of previously taken photographs and reflections on their participation in the study. Finally, we examine the need to consider the intended audience of photographs, and specific ethical and methodological considerations for researchers contemplating the incorporation of participant-employed photography. In doing so, we provide insight into the advantages and challenges of photo-methods, which can inform other researchers contemplating the incorporation of participant-employed photography into social research.

From Research to Policy: Roma Participation through Communicative Organization

Science.gov (United States)

Munte, Ariadna; Serradell, Olga; Sorde, Teresa

2011-01-01

For centuries, Roma people's social exclusion has been reinforced through research that has legitimized stereotypes rather than helping to overcome them. This has led Roma people to refuse to participate in the kind of research that has contributed to discrimination against them. We describe how the critical communicative methodology, used in the…

Developing Research-Ready Skills: Preparing Early Academic Students for Participation in Research Experiences

Science.gov (United States)

Charlevoix, D. J.; Morris, A. R.

2015-12-01

Engaging lower-division undergraduates in research experiences is a key but challenging aspect of guiding talented students into the geoscience research pipeline. UNAVCO conducted a summer internship program to prepare first and second year college students for participation in authentic, scientific research. Many students in their first two years of academic studies do not have the science content knowledge or sufficient math skills to conduct independent research. Students from groups historically underrepresented in the geosciences may face additional challenges in that they often have a less robust support structure to help them navigate the university environment and may be less aware of professional opportunities in the geosciences.UNAVCO, manager of NSF's geodetic facility, hosted four students during summer 2015 internship experience aimed to help them develop skills that will prepare them for research internships and skills that will help them advance professionally. Students spent eight weeks working with UNAVCO technical staff learning how to use equipment, prepare instrumentation for field campaigns, among other technical skills. Interns also participated in a suite of professional development activities including communications workshops, skills seminars, career circles, geology-focused field trips, and informal interactions with research interns and graduate student interns at UNAVCO. This presentation will outline the successes and challenges of engaging students early in their academic careers and outline the unique role such experiences can have in students' academic careers.

Key Stakeholders' Perceptions of Motivators for Research Participation Among Individuals Who Are Incarcerated.

Science.gov (United States)

Hanson, Bridget L; Faulkner, Sherilyn A; Brems, Christiane; Corey, Staci L; Eldridge, Gloria D; Johnson, Mark E

2015-10-01

Understanding motivations of research participants is crucial for developing ethical research protocols, especially for research with vulnerable populations. Through interviews with 92 institutional review board members, prison administrators, research ethicists, and researchers, we explored key stakeholders' perceptions of what motivates incarcerated individuals to participate in research. Primary motivators identified were a desire to contribute to society, gaining knowledge and health care, acquiring incentives, and obtaining social support. The potential for undue influence or coercion were also identified as motivators. These results highlight the need for careful analysis of what motivates incarcerated individuals to participate in research as part of developing or reviewing ethically permissible and responsible research protocols. Future research should expand this line of inquiry to directly include perspectives of incarcerated individuals. © The Author(s) 2015.

Disclosure of genetics research results after the death of the patient participant: a qualitative study of the impact on relatives.

Science.gov (United States)

Ormondroyd, E; Moynihan, C; Watson, M; Foster, C; Davolls, S; Ardern-Jones, A; Eeles, R

2007-08-01

When a gene mutation is identified in a research study following the death of the study participant, it is not clear whether such information should be made available to relatives. We report here an evaluation of the impact on relatives of being informed of study results that detected pathogenic BRCA2 mutations in a male relative, now deceased, who had early onset (under the age of 55) prostate cancer. The breast and ovarian cancer risk was unknown to the living relatives. Qualitative analysis of interviews with thirteen relatives indicated that those who had a higher risk perception, resulting from an awareness of cancer family history or experiential knowledge of cancer in their family, tended to adjust more easily to the results. All participants believed that genetics research results of clinical significance should be fed back to relatives. Those who were fully aware of the BRCA2 results and implications for themselves felt they had benefited from the information, irrespective of whether or not they had elected for genetic testing, because of the consequent availability of surveillance programs. Initial anxiety upon learning about the BRCA2 result was alleviated by genetic counselling. Factors influencing those who have not engaged with the information included scepticism related to the relative who attempted to inform them, young age and fear of cancer. Those who had not sought genetic counselling did not attempt further dissemination, and some were not undergoing regular screening. Implications for informed consent in genetics research programs, and the requirement for genetic counselling when research results are disclosed, are discussed.

Schools as Sites for Recruiting Participants and Implementing Research.

Science.gov (United States)

Bartlett, Robin; Wright, Tiffany; Olarinde, Tia; Holmes, Tara; Beamon, Emily R; Wallace, Debra

2017-01-01

Schools can be a valuable resource for recruitment of participants for research involving children, adolescents, and parents. Awareness of the benefits and challenges of working with schools can assist researchers in developing effective school partnerships. This article discusses the advantages of conducting research within the school system as well as the challenges that may also arise. Such challenges include developing key contacts, building relationships, logistical arrangements, and facilitating trust in the research topic and team. Suggestions for strategies to forge successful collaborative relationships with schools are provided.

Quantitative valuation placed by children and teenagers on participation in two hypothetical research scenarios.

Science.gov (United States)

Funnell, Dan; Fertleman, Caroline; Carrey, Liz; Brierley, Joe

2012-11-01

For paediatric medicine to advance, research must be conducted specifically with children. Concern about poor recruitment has led to debate about payments to child research participants. Although concerns about undue influence by such 'compensation' have been expressed, it is useful to determine whether children can relate the time and inconvenience associated with participation to the value of payment offered. This study explores children's ability to determine fair remuneration for research participation, and reviews payments to children participating in research. Forty children were interviewed before outpatient visits at two London Hospitals: Great Ormond Street Children's Hospital and the Whittington Hospital District General Hospital. Children were asked to value their involvement in two hypothetical research scenarios - the first an 'additional blood sample', the second also involving daily oral oil capsules taken for a fortnight before further venesection. Background knowledge about familiarity with money, and experience with hospitalisation was assessed. The mean valuation of involvement in the second scenario (£13.18) was higher than in the first (£2.84) (pfair valuation for participation in medical research. The monetary sums are influenced by the time and inconvenience involved in the research, and by the extent of recent experience with hospital procedures. The authors review current ethical thinking regarding payments to child research participants and suggest that a fair wage model might be an ethically acceptable way to increase participation of children in research.

Planning Today for Tomorrow’s Research: Analysis of Factors Influencing Participation in a Pediatric Cancer Research Biorepository

Directory of Open Access Journals (Sweden)

Rania M. Labib

2018-01-01

Full Text Available BackgroundBiobanks have become a powerful tool that fosters biomedical research. The success of biobanks depends upon people’s perception and willingness to donate their samples for research. This is the first biorepository in Egypt, hence, little is known about the beliefs and attitudes of parents toward participation.AimTo investigate the level of willingness of Egyptians to donate samples of their children and themselves for research and the different factors influencing participation.Materials and methodsA structured questionnaire was designed covering multiple items expected to affect the enrollment decision. This was conducted in-person, and data collected included demographic data, socioeconomic, and educational level. In addition, in the case of refusal, participants were asked about reasons behind their decision.ResultsOnly about 3.1% of patients have not been enrolled in the project, and 0.3% have withdrawn. Three demographic factors were found having disparate trends in the decision-making process to participate or not: father’s education (p = 0.0001, mother’s education (p = 0.0001, and father’s age (p = 0.034.ConclusionEgyptian parents were willing to donate their samples as well as their children’s samples in our research biorepository. The idea of participation was presented in an interview during which the consent form was explained in a comprehensive transparent way allowing participants the right to refuse or withdraw at any time. Still, different communication approaches are needed with older, more highly educated parents to encourage them to participate.

Initial experience with a group presentation of study results to research participants

Directory of Open Access Journals (Sweden)

Bent Stephen

2008-03-01

Full Text Available Abstract Background Despite ethical imperatives, informing research participants about the results of the studies in which they take part is not often performed. This is due, in part, to the costs and burdens of communicating with each participant after publication of the results. Methods Following the closeout and publication of a randomized clinical trial of saw palmetto for treatment of symptoms of benign prostatic hyperplasia, patients were invited back to the research center to participate in a group presentation of the study results. Results Approximately 10% of participants attended one of two presentation sessions. Reaction to the experience of the group presentation was very positive among the attendees. Conclusion A group presentation to research participants is an efficient method of communicating study results to those who desire to be informed and was highly valued by those who attended. Prospectively planning for such presentations and greater scheduling flexibility may result in higher attendance rates. Trial Registration Number Clinicaltrials.gov #NCT00037154

Recruitment and Participation of Older Lesbian and Bisexual Women in Intervention Research.

Science.gov (United States)

Wood, Susan F; Brooks, Jacquetta; Eliason, Michele J; Garbers, Samantha; McElroy, Jane A; Ingraham, Natalie; Haynes, Suzanne G

2016-07-07

Very little research has addressed issues of recruitment and participation of lesbian and bisexual (LB) women, aged 40 and older, into research studies. This study is based on a larger cross-site intervention study that recruited women from five geographic regions in the United States for culturally specific LB healthy weight programs, lasting 12 or 16 weeks. Principal investigators (PIs) of the five intervention programs completed a questionnaire on recruitment and participation strategies and barriers. Participant data on completion and sociodemographic variables were compiled and analyzed. The recruitment strategies the programs' PIs identified as most useful included word-of-mouth participant referrals, emails to LB participants' social networks, and use of electronic health records (at the two clinic-based programs) to identify eligible participants. Flyers and web postings were considered the least useful. Once in the program, participation and completion rates were fairly high (approximately 90%), although with varying levels of engagement in the different programs. Women who were younger or single were more likely to drop out. Women with disabilities had a lower participation/completion rate (82%) than women without any disability (93%). Dropouts were associated with challenges in scheduling (time of day, location) and changes in health status. Implementation of key strategies can improve both recruitment and participation, but there is a great need for further study of best practices to recruit and promote participation of LB women for health intervention research. Copyright © 2016 Jacobs Institute of Women's Health. All rights reserved.

Using Facebook and participant information clips to recruit emergency nurses for research.

Science.gov (United States)

Child, Rebekah Jay Howerton; Mentes, Janet C; Pavlish, Carol; Phillips, Linda R

2014-07-01

To examine the use of social networking sites in recruiting research participants. Workplace violence is an important issue for staff and patients. One workplace that reports the highest levels of violence is the emergency department. The ability to research issues such as workplace violence in real time is important in addressing them expeditiously, and social media can be used to advertise and recruit research subjects, implement studies and disseminate information. The experience of recruiting subjects through social networks, specifically Facebook, and the use of participant information clips (PICs) for advertising. A brief discussion of the history of advertising and communication using the internet is presented to provide an understanding of the trajectory of social media and implications for recruitment in general. The paper then focuses on the lead author's experience of recruiting subjects using Facebook, including its limitations and advantages, and her experience of using participant information clips. The low cost of advertising and recruiting participants this way, as well as the convenience provided to participants, resulted in almost half the study's total participants being obtained within 72 hours. Using Facebook to target a younger age range of nurses to participate in a study was successful and yielded a large number of completed responses in a short time period at little cost to the researcher. Recording the PIC was cheap, and posting it and a link to the site on pre-existing group pages was free, providing valuable viral marketing and snowball recruiting. Future researchers should not overlook using social network sites for recruitment if the demographics of the desired study population and subject matter permit it.

Teachers' participation in research programs improves their students' achievement in science.

Science.gov (United States)

Silverstein, Samuel C; Dubner, Jay; Miller, Jon; Glied, Sherry; Loike, John D

2009-10-16

Research experience programs engage teachers in the hands-on practice of science. Program advocates assert that program participation enhances teachers' skills in communicating science to students. We measured the impact of New York City public high-school science teachers' participation in Columbia University's Summer Research Program on their students' academic performance in science. In the year before program entry, students of participating and nonparticipating teachers passed a New York State Regents science examination at the same rate. In years three and four after program entry, participating teachers' students passed Regents science exams at a rate that was 10.1% higher (P = 0.049) than that of nonparticipating teachers' students. Other program benefits include decreased teacher attrition from classroom teaching and school cost savings of U.S. $1.14 per $1 invested in the program.

Ethical issues in identifying and recruiting participants for familial genetic research.

Science.gov (United States)

Beskow, Laura M; Botkin, Jeffrey R; Daly, Mary; Juengst, Eric T; Lehmann, Lisa Soleymani; Merz, Jon F; Pentz, Rebecca; Press, Nancy A; Ross, Lainie Friedman; Sugarman, Jeremy; Susswein, Lisa R; Terry, Sharon F; Austin, Melissa A; Burke, Wylie

2004-11-01

Family-based research is essential to understanding the genetic and environmental etiology of human disease. The success of family-based research often depends on investigators' ability to identify, recruit, and achieve a high participation rate among eligible family members. However, recruitment of family members raises ethical concerns due to the tension between protecting participants' privacy and promoting research quality, and guidelines for these activities are not well established. The Cancer Genetics Network Bioethics Committee assembled a multidisciplinary group to explore the scientific and ethical issues that arise in the process of family-based recruitment. The group used a literature review as well as expert opinion to develop recommendations about appropriate approaches to identifying, contacting, and recruiting family members. We conclude that there is no single correct approach, but recommend a balanced approach that takes into account the nature of the particular study as well as its recruitment goals. Recruitment of family members should be viewed as part of the research protocol and should require appropriate informed consent of the already-enrolled participant. Investigators should inform prospective participants why they are being contacted, how information about them was obtained, and what will happen to that information if they decide not to participate. The recruitment process should also be sensitive to the fact that some individuals from families at increased genetic risk will have no prior knowledge of their risk status. These recommendations are put forward to promote further discussion about the advantages and disadvantages of various approaches to family-based recruitment. They suggest a framework for considering alternative recruitment strategies and their implications, as well as highlight areas in need of further empirical research. (c) 2004 Wiley-Liss, Inc.

Experiences of the Breast Cancer Patients Undergoing Radiotherapy at a Public Hospital Peshawar Pakistan

Directory of Open Access Journals (Sweden)

Gulzar Habibullah

2018-01-01

Full Text Available Objective: This study aimed to explore the experiences of female breast cancer patients undergoing radiotherapy (RT in a public hospital in Peshawar, Pakistan. Methods: This study employed a descriptive exploratory method. A purposive sample of 14 breast cancer women undergoing RT was selected for this study. Data were collected over the period of 5 months, using a semi-structured interview guide and conducting in-depth face-to-face interviews. These interviews were audio taped and transcribed by a bilingual transcriber. The translated version of the interview was coded, and the analysis was done manually. Results: Four main categories emerged from data analysis, which were: feelings and perceptions of the patients, their challenges, coping strategies, and teaching and informational needs. Conclusions: Women undergoing RT in this culture experience more intense psychological effects, as compared to the physical effects. Keeping in mind, the magnitude of the emotional stress experienced by the participants, recommendations for policy reforms, and training for female RT staff are suggested based on findings of this research.

Sexuality educators: taking a stand by participating in research

African Journals Online (AJOL)

Sexuality educators: taking a stand by participating in research ... and Sexually Transmitted Infections (STIs) (United Nations Educational, Scientific, .... assimilates new ideas which could assist in keeping up with what learners need from.

Online Facebook Focus Group Research of Hard-to-Reach Participants

Directory of Open Access Journals (Sweden)

Anastasia Aldelina Lijadi

2015-12-01

Full Text Available Conducting discovery-oriented qualitative research about the life experiences of hard-to-reach individuals posed several challenges for recruiting participants and collecting rich textual data. In a study pertaining the experiences of Third Culture Kids (TCKs, we explored the benefits of the social media, such as Facebook as a platform to collect data. TCKs are individuals who define their sense of belonging to the third culture trailing their parents moving across borders during their developmental years. Adult TCKs live in many different countries, and accessing and interviewing respondents could be a difficult and costly endeavor. In this article, the authors share their experience conducting online, asynchronous focus groups using a Facebook platform. We reflect upon the process of setting up a secret Facebook focus group for research purposes, recruiting participants, rapport building between facilitator and participants, monitoring and keeping track of participants’ responses, and the dynamics emerging within an online focus group. We also discuss the novelty, limitations, and benefits of the Facebook focus group as an emerging mode for collecting qualitative data from hard-to-reach participants.

Why families choose not to participate in research: feedback from non-responders.

Science.gov (United States)

Levickis, Penny; Naughton, Geraldine; Gerner, Bibi; Gibbons, Kay

2013-01-01

Subjects who did not respond to an invitation to participate in a community-based randomised controlled trial for childhood obesity in Melbourne, Australia were approached to investigate reasons for non-participation. Between January and September 2007, 305 families were sent a brief questionnaire and invited to take part in the current study. Thirty-seven questionnaires were returned and 12 parents agreed to a follow-up interview. Questionnaire data were quantitatively analysed. The interviews were conducted via the telephone and provided detailed qualitative information on non-participation. Lack of time was cited as a main reason for non-participation. Different aspects of time were discussed including lack of time to dedicate to a topic seen as low priority, overestimated perception of time for study commitments and the inappropriate timing of the request. Other major reasons for non-participation included risk of negative experiences and the impact of the initial contact with the study. This study illustrates the experiences of potential participants during the recruitment process, their perceptions of study commitments and how their previous experiences impact on their decision to participate in research. These findings provide insight into the decision not to participate in health research and could be used to modify recruitment procedures for future health research as a way of improving the recruitment experience for potential participants as well as enhancing recruitment rates. © 2012 The Authors. Journal of Paediatrics and Child Health © 2012 Paediatrics and Child Health Division (Royal Australasian College of Physicians).

Family and physician influence on asthma research participation decisions for adolescents: the effects of adolescent gender and research risk.

Science.gov (United States)

Brody, Janet L; Scherer, David G; Annett, Robert D; Turner, Charles; Dalen, Jeanne

2006-08-01

There is considerable ethical and legal ambiguity surrounding the role of adolescents in the decision-making process for research participation. Depending on the nature of the study and the regulations involved, adolescents may have independent responsibility for providing informed consent, they may be asked to provide their assent, or they may be completely excluded from the decision-making process. This study examined parent and adolescent perceptions of decision-making authority and sources of influence on adolescent research participation decisions, and examined whether perceptions of influence differed based on adolescent gender and level of research risk. Adolescents (n = 36) with asthma and their parents reviewed 9 pediatric research protocols, decided whether they would choose to participate, rated the extent they would be responsible for the actual decision, and indicated the ability of family and physician to influence their decisions. Multivariate analyses of variance were used to evaluate differences in perceptions of decision-making authority and sources of influence on the decisions. Adolescents were less willing to cede decision making authority to parents than parents anticipated. Parents and adolescents acknowledged a greater openness to influence from physicians than from family for above minimal risk studies. Parents were more willing to consider opinions from male adolescents. Adolescents desire responsibility for research participation decisions, though parents may not share these views. Physicians' views on research participation are important to families, especially for above minimal risk studies. Parents may grant more decision-making autonomy to adolescent males than to females. Researchers, physicians, and institutions play a key role in facilitating the ethical enrollment of adolescents into biomedical research. Educational, policy, and oversight processes that support both adolescent autonomy and parental responsibility for research

Motivational assessment of non-treatment buprenorphine research participation in heroin dependent individuals.

Science.gov (United States)

Papke, Gina; Greenwald, Mark K

2012-06-01

Heroin abuse remains an important public health problem, particularly in economically disadvantaged areas. Insight into this problem is gained from interviewing addicted individuals. However, we lack systematic data on factors that motivate heroin users to participate in non-treatment research that offers both financial incentives (compensation) and non-financial incentives (e.g., short-term medication). To better understand the relative importance of several types of personal motivations to participate in non-treatment buprenorphine research, and to relate self-motivations to social, economic, demographic and drug use factors. Heroin dependent volunteers (N=235 total; 57 female and 178 male; 136 African American, 86 Caucasian, and 13 Other) applied for non-therapeutic buprenorphine research in an urban outpatient setting from 2004 to 2008. We conducted a semi-structured behavioral economic interview, after which participants ranked 11 possible motivations for research participation. Although the study was repeatedly described as non-treatment research involving buprenorphine, participants often ranked some treatment-related motivations as important (wanting to reduce/stop heroin use, needing a medication to get stabilized/detoxify). Some motivations correlated with income, heroin use, and years since marketing of buprenorphine. Two dimensions emerged from principal component analysis of motivation rankings: (1) treatment motivation vs. greater immediate needs and (2) commitment to trying alternatives vs. a more accepting attitude toward traditional interventions. In summary, heroin addicts' self-motivations to engage in non-therapeutic research are complex--they value economic gain but not exclusively or primarily--and relate to variables such as socioeconomic factors and drug use. Copyright © 2011 Elsevier Ireland Ltd. All rights reserved.

Employees' perspectives on ethically important aspects of genetic research participation: a pilot study.

Science.gov (United States)

Roberts, Laura Weiss; Warner, Teddy D; Geppert, Cynthia M A; Rogers, Melinda; Green Hammond, Katherine A

2005-01-01

Insights from genetic research may greatly improve our understanding of physical and mental illnesses and assist in the prevention of disease. Early experience with genetic information suggests that it may lead to stigma, discrimination, and other psychosocial harms, however, and this may be particularly salient in some settings, such as the workplace. Despite the importance of these issues, little is known about how healthy adults, including workers, perceive and understand ethically important issues in genetic research pertaining to physical and mental illness. We developed, pilot tested, and administered a written survey and structured interview to 63 healthy working adults in 2 settings. For this paper, we analyzed a subset of items that assessed attitudes toward ethically relevant issues related to participation in genetic research on physical and mental illness, such as its perceived importance, its acceptability for various populations, and appropriate motivations for participation. Our respondents strongly endorsed the importance of physical and mental illness genetic research. They viewed participation as somewhat to very acceptable for all 12 special population groups we asked about, including persons with mental illness. They perceived more positives than negatives in genetic research participation, giving neutral responses regarding potential risks. They affirmed many motivations for participation to varying degrees. Men tended to affirm genetic research participation importance, acceptability, and motivations more strongly than women. Healthy working persons may be willing partners in genetic research related to physical and mental illnesses in coming years. This project suggests the feasibility and value of evidence-based ethics inquiry, although further study is necessary. Evidence regarding stakeholders' perspectives on ethically important issues in science may help in the development of research practices and policy.

Children's participation in research

DEFF Research Database (Denmark)

Broström professor m.so., Stig

2012-01-01

In (post) modern society children are seen as active subjects and participants who have a legitimate basis in the United Nations Convention of the Rights of the Child. As a consequence of this, children are able to play an active role in the 10 planning of/and participation in both education...

Children's Decision-Making Involvement About Research Participation: Associations With Perceived Fairness and Self-Efficacy.

Science.gov (United States)

Miller, Victoria A; Feudtner, Chris; Jawad, Abbas F

2017-04-01

The primary objective of this study was to examine the associations of children's involvement in decisions about research participation with their perceptions of the decision-making process and self-efficacy. Participants were children (ages 8-17) who enrolled in research studies in the prior 2 months. Children completed a questionnaire that yielded three decision-making involvement subscales: Researcher Engages Child, Researcher Supports Autonomy, and Child Participates. Children reported on fairness of the decision-making process and health-related decision self-efficacy. After adjusting for age, higher scores on Researcher Engages Child were associated with greater self-efficacy, and higher scores on Researcher Supports Autonomy were associated with greater perceived fairness. These data underscore the potential importance of researcher-child interactions about research participation when assent is sought, including proactively involving children in the decision by asking for their opinions and communicating their central role in the decision, which are likely to be more meaningful to children than receiving information or signing a form.

The evolution of research participant protections in South Africa

African Journals Online (AJOL)

The legislative basis for scientific research was first promulgated in 1945. However, there was ... for participant protections, the protections in the Bill of Rights of the SA .... human beings;. • improved methods for the provision of health services;.

A 2-1-1 research collaboration: participant accrual and service quality indicators.

Science.gov (United States)

Eddens, Katherine S; Alcaraz, Kassandra I; Kreuter, Matthew W; Rath, Suchitra; Greer, Regina

2012-12-01

In times of crises, 2-1-1 serves as a lifeline in many ways. These crises often cause a spike in call volume that can challenge 2-1-1's ability to meet its service quality standards. For researchers gathering data through 2-1-1s, a sudden increase in call volume might reduce accrual as 2-1-1 has less time to administer study protocols. Research activities imbedded in 2-1-1 systems may affect directly 2-1-1 service quality indicators. Using data from a 2-1-1 research collaboration, this paper examines the impact of crises on call volume to 2-1-1, how call volume affects research participant accrual through 2-1-1, and how research recruitment efforts affect 2-1-1 service quality indicators. t-tests were used to examine the effect of call volume on research participant accrual. Linear and logistic regressions were used to examine the effect of research participant accrual on 2-1-1 service quality indicators. Data were collected June 2010-December 2011; data were analyzed in 2012. Findings from this collaboration suggest that crises causing spikes in call volume adversely affect 2-1-1 service quality indicators as well as accrual of research participants. Administering a brief (2-3 minute) health risk assessment did not affect service quality negatively, but administering a longer (15-18 minute) survey had a modest adverse effect on these indicators. In 2-1-1 research collaborations, both partners need to understand the dynamic relationship among call volume, research accrual, and service quality and adjust expectations accordingly. If research goals include administering a longer survey, increased staffing of 2-1-1 call centers may be needed to avoid compromising service quality. Copyright © 2012 American Journal of Preventive Medicine. Published by Elsevier Inc. All rights reserved.

Vulnerable participants in health research: methodological and ethical challenges

DEFF Research Database (Denmark)

Nordentoft, Helle Merete; Kappel, Nanna

2011-01-01

, leaving both professionals and researchers in ethical and moral dilemmas. In this article, we specifically focus on the methodological challenges of obtaining informed consent from drug users and terminally ill cancer patients in our PhD research. The question is how to illuminate the needs and problems......Ethical guidelines for conducting research are embedded in the Helsinki Declaration of 1964. We contend that these abstract and intentionally universal guidelines need to be appropriated for social and healthcare research, in which purpose and methods often deviate from medical research....... The guidelines appear to be instrumental and over-simplistic representations of the often ‘messy’ realities surrounding the research process that is often guided by relational and local negotiations of ethical solutions. Vulnerable participants, for instance, challenge both professional and research ethics...

Barriers to participation in mental health research: findings from the Genetics and Psychosis (GAP) Study.

Science.gov (United States)

Woodall, Anna; Howard, Louise; Morgan, Craig

2011-01-01

The aim of this study was to investigate why people with a first episode of psychosis choose or decline to participate in mental health research, using a qualitative study design. Participants were recruited via referrals from the Genetics and Psychosis (GAP) study. A total of 26 individuals with a first-episode of psychosis (nine of whom declined participation in the GAP study and 17 who participated) were individually interviewed and asked about their attitudes towards mental health research participation. Thematic analysis of interview transcripts was used to determine dominant themes and sub-themes on what constituted barriers and facilitators to participation. Reasons for research participation identified included a desire to help others, curiosity, and positive experiences with clinicians. Decisions to participate or not were also influenced by practical issues, including the timing of the approach, researchers' communication skills and whether individuals had concerns that it may be potentially harmful to their health. Other barriers to participation included patients' conceptualizations of mental health problems and the influence of other inpatients. Information on barriers and facilitators to recruitment in mental health research could inform recruitment strategies, thereby maximizing recruitment rates and minimizing the risk of selection biases.

[The health of adults undergoing an eviction process].

Science.gov (United States)

Bolívar Muñoz, Julia; Bernal Solano, Mariola; Mateo Rodríguez, Inmaculada; Daponte Codina, Antonio; Escudero Espinosa, Cecilia; Sánchez Cantalejo, Carmen; González Usera, Isis; Robles Ortega, Humbelina; Mata Martín, José Luis; Fernández Santaella, M Carmen; Vila Castellar, Jaime

2016-01-01

To analyze perceived health status and other health-related indicators in the adult population in Granada (Spain) undergoing an eviction process from their homes, whether rented or owned, in comparison with health indicators in the general adult population in Andalusia. A cross-sectional survey was administered by trained staff. The survey included instruments from the Andalusian Health Survey 2011 for measuring variables related to physical and mental health, as well as health-related habits. We compared the results with those obtained from the Andalusian general population through the Andalusian Health Survey. A bivariate analysis using the χ2 test and a multivariate logistic regression analysis were conducted. We obtained a total sample of 205 people in the process of eviction. A total of 59.5% (n=122) were women, and 40.5% (n=83) were men. Participants were more likely to have poor health (odds ratio [OR]: 12.63, 95% confidence interval [95%CI]: 8.74-18.27), have cardiovascular diseases (OR: 3.08; 95%CI: 1.54- 6.16), or to smoke (OR: 1.68; 95% CI: 1.21-2.33) compared with the Andalusian general population. Most of the health indicators analyzed showed a worse outcome for women undergoing an eviction process. Our results suggest that, in the current context of economic crisis, people undergoing a process of eviction in Granada and its metropolitan area show poorer health than the Andalusian general population. Further research is needed on health and evictions from different methodological approaches, for a better understanding of the topic. Copyright © 2015 SESPAS. Published by Elsevier Espana. All rights reserved.

The significant impact of education, poverty, and race on Internet-based research participant engagement.

Science.gov (United States)

Hartz, Sarah M; Quan, Tiffany; Ibiebele, Abiye; Fisher, Sherri L; Olfson, Emily; Salyer, Patricia; Bierut, Laura J

2017-02-01

Internet-based technologies are increasingly being used for research studies. However, it is not known whether Internet-based approaches will effectively engage participants from diverse racial and socioeconomic backgrounds. A total of 967 participants were recruited and offered genetic ancestry results. We evaluated viewing Internet-based genetic ancestry results among participants who expressed high interest in obtaining the results. Of the participants, 64% stated that they were very or extremely interested in their genetic ancestry results. Among interested participants, individuals with a high school diploma (n = 473) viewed their results 19% of the time relative to 4% of the 145 participants without a diploma (P Internet-based research was low despite high reported interest. This suggests that explicit strategies should be developed to increase diversity in Internet-based research.Genet Med 19 2, 240-243.

Protection of human research participants: accreditation of programmes in the Indian context.

Science.gov (United States)

Bhosale, Neelambari; Nigar, Shagoofa; Das, Soma; Divate, Uma; Divate, Pathik

2014-01-01

The recent negative media reports on the status of participants in clinical trials in India, together with the concerns expressed by the regulatory bodies, have raised questions regarding India's credibility in the conduct of clinical research. Even though the regulations require the registration of trials with the Clinical Trial Registry-India and despite the recently mandated registration of ethics committees (ECs) with the Drugs Controller General of India, the lack of governmental audit and accreditation procedures and bodies has resulted in inadequate protection of human participants in clinical research. Institutions and research sites would benefit by implementing a human research protection programme, which would safeguard the rights, safety and wellbeing of participants in clinical trials, in addition to improving the processes and procedures for the conduct of the trial. The Jehangir Clinical Development Centre, Pune has received accreditation from the Association for the Accreditation of Human Research Protection Programme (AAHRPP). A unique feature of the AAHRPP is the integrative nature of the programme, wherein the sponsors of the trial, investigators, EC members and institution work towards the common goal of protecting research participants. Here, we discuss the improvement needed in the quality standards of institutions for them to be able to meet the requirements of the AAHRPP. We also suggest the need for a governmental accreditation body, which will be required for the future promotion of and improvement in the standards for clinical practice in India.

A Framework for Clarifying "Participation" in Participatory Research to Prevent its Rejection for the Wrong Reasons

Directory of Open Access Journals (Sweden)

Olivier Barreteau

2010-06-01

Full Text Available Participatory research relies on stakeholder inputs to obtain its acclaimed benefits of improved social relevance, validity, and actionability of research outcomes. We focus here on participatory research in the context of natural resource management. Participants' acceptance of participatory research processes is key to their implementation. Our first assumption is that this positive view and acceptance of participation in research processes is a public good for the whole participatory research community. We also assume that the diversity of participatory forms of research is rarely considered by potential participants when they make their decisions about whether or not to participate in a proposed process. We specifically address how to avoid stakeholders' reluctance to be involved in participatory research projects based on disillusion with past experiences. We argue that the disappointment experienced by stakeholders and other participants (i.e., researchers and policy makers can be avoided by being upfront and precise about how "participation" will be implemented, and what kind of involvement is expected from participants. Such a collective effort from the research community can also clarify the variety of possible implementations for potential participants. Building on earlier efforts to characterize and categorize the diversity of participatory research approaches, we develop a conceptual analytic procedural framework to make participants' roles explicit in the implementation of different participatory research processes. This framework consists of three facets: (1 the flows of information among participants and the control over these flows for each step in a process, i.e., who will be expected to produce information, who will use this information, and who will receive the results; (2 the timing of the involvement of participants in the different steps of the research process, and the framing power that is associated with each process

[The system of protection of scientific biomedical research participants in France and in Poland].

Science.gov (United States)

Czarkowski, Marek; Sieczych, Alicja

2013-07-01

Realizing scientific biomedical research conducted on human-beings demands obeying ample ethical rules. However, states keep independence in the means of implementing deontological guidelines to legislative acts. The aim of the article is to compare rules of law relative to protection of scientific biomedical research participants in two European Union member states--France and Poland. French regulations cover more types of scientific biomedical research than those in Poland. In France almost all types of interventional scientific biomedical research including research on human biological samples and research on cosmetics are covered by the rules of law. Polish regulations are limited to interventional research conducted by doctors and dentists. In both states projects of clinical trials of medicinal products demands double acceptance - from bioethics committee and from competent state authority. In protection of scientific biomedical research participants the role of state authority competent for personal data is more vital in France than it is in Poland. In France there is also National Ethics Advisory Committee whereas in Poland there is no such institution. The systems protecting scientific biomedical research participants differs therefore in both states in many vital aspects and French measures cover more types of scientific biomedical research, hence the level of participants protection in various types of research is more equitable.

Decision-making by adolescents and parents of children with cancer regarding health research participation.

Science.gov (United States)

Read, Kate; Fernandez, Conrad Vincent; Gao, Jun; Strahlendorf, Caron; Moghrabi, Albert; Pentz, Rebecca Davis; Barfield, Raymond Carlton; Baker, Justin Nathaniel; Santor, Darcy; Weijer, Charles; Kodish, Eric

2009-09-01

Low rates of participation of adolescents and young adults (AYAs) in clinical oncology trials may contribute to poorer outcomes. Factors that influence the decision of AYAs to participate in health research and whether these factors are different from those that affect the participation of parents of children with cancer. This is a secondary analysis of data from validated questionnaires provided to adolescents (>12 years old) diagnosed with cancer and parents of children with cancer at 3 sites in Canada (Halifax, Vancouver, and Montreal) and 2 in the United States (Atlanta, GA, and Memphis, TN). Respondents reported their own research participation and cited factors that would influence their own decision to participate in, or to provide parental authorization for their child to participate in health research. Completed questionnaire rates for AYAs and parents were 86 (46.5%) of 185 and 409 (65.2%) of 627, respectively. AYAs (n = 86 [67%]) and parents (n = 409 [85%]) cited that they would participate in research because it would help others. AYAs perceived pressure by their family and friends (16%) and their physician (19%). Having too much to think about at the time of accrual was an impediment to both groups (36% AYAs and 47% parents). The main deterrent for AYAs was that research would take up too much time (45%). Nonwhite parents (7 of 56 [12.5%]) were more apt to decline than white parents (12 of 32 [3.7%]; P < .01). AYAs identified time commitment and having too much to think about as significant impediments to research participation. Addressing these barriers by minimizing time requirements and further supporting decision-making may improve informed consent and impact on enrollment in trials.

Strategies to successfully recruit and engage clinical nurses as participants in qualitative clinical research.

Science.gov (United States)

Coyne, Elisabeth; Grafton, Eileen; Reid, Alayne

2016-12-01

Research conducted in the clinical area promotes the delivery of evidence-based patient care. Involving nurses as participants in research is considered essential to link patient care with evidence-based interventions. However recruitment is influenced by nurses' competing demands and understanding engagement strategies may assist future research. This reflective analysis aimed to understand influencing factors and strategies that support successful recruitment nurses in clinical research. A reflective analysis of research notes and focus group data from research with oncology nurses was completed. This research identified that gaining support from key staff, understanding work constraints and developing a rapport with nurses is important. Establishing clear relevance and benefits of the research and being flexible with research requirements enabled nurses to participate in the research. Clear information and a willingness to accommodate the demands and dynamic nature of the environment, ensures ongoing support and engagement of nurses in the clinical setting as participants in research.

Lung Cancer Screening Participation: Developing a Conceptual Model to Guide Research.

Science.gov (United States)

Carter-Harris, Lisa; Davis, Lorie L; Rawl, Susan M

2016-11-01

To describe the development of a conceptual model to guide research focused on lung cancer screening participation from the perspective of the individual in the decision-making process. Based on a comprehensive review of empirical and theoretical literature, a conceptual model was developed linking key psychological variables (stigma, medical mistrust, fatalism, worry, and fear) to the health belief model and precaution adoption process model. Proposed model concepts have been examined in prior research of either lung or other cancer screening behavior. To date, a few studies have explored a limited number of variables that influence screening behavior in lung cancer specifically. Therefore, relationships among concepts in the model have been proposed and future research directions presented. This proposed model is an initial step to support theoretically based research. As lung cancer screening becomes more widely implemented, it is critical to theoretically guide research to understand variables that may be associated with lung cancer screening participation. Findings from future research guided by the proposed conceptual model can be used to refine the model and inform tailored intervention development.

Development and Pilot Testing of a Decision Aid for Genomic Research Participants Notified of Clinically Actionable Research Findings for Cancer Risk.

Science.gov (United States)

Willis, Amanda M; Smith, Sian K; Meiser, Bettina; Ballinger, Mandy L; Thomas, David M; Tattersall, Martin; Young, Mary-Anne

2018-02-17

Germline genomic testing is increasingly used in research to identify genetic causes of disease, including cancer. However, there is evidence that individuals who are notified of clinically actionable research findings have difficulty making informed decisions regarding uptake of genetic counseling for these findings. This study aimed to produce and pilot test a decision aid to assist participants in genomic research studies who are notified of clinically actionable research findings to make informed choices regarding uptake of genetic counseling. Development was guided by published literature, the International Patient Decision Aid Standards, and the expertise of a steering committee of clinicians, researchers, and consumers. Decision aid acceptability was assessed by self-report questionnaire. All 19 participants stated that the decision aid was easy to read, clearly presented, increased their understanding of the implications of taking up research findings, and would be helpful in decision-making. While low to moderate levels of distress/worry were reported after reading the booklet, a majority of participants also reported feeling reassured. All participants would recommend the booklet to others considering uptake of clinically actionable research findings. Results indicate the decision aid is acceptable to the target audience, with potential as a useful decision support tool for genomic research participants.

Language translation challenges with Arabic speakers participating in qualitative research studies.

Science.gov (United States)

Al-Amer, Rasmieh; Ramjan, Lucie; Glew, Paul; Darwish, Maram; Salamonson, Yenna

2016-02-01

This paper discusses how a research team negotiated the challenges of language differences in a qualitative study that involved two languages. The lead researcher shared the participants' language and culture, and the interviews were conducted using the Arabic language as a source language, which was then translated and disseminated in the English language (target language). The challenges in relation to translation in cross-cultural research were highlighted from a perspective of establishing meaning as a vital issue in qualitative research. The paper draws on insights gained from a study undertaken among Arabic-speaking participants involving the use of in-depth semi-structured interviews. The study was undertaken using a purposive sample of 15 participants with Type 2 Diabetes Mellitus and co-existing depression and explored their perception of self-care management behaviours. Data analysis was performed in two phases. The first phase entailed translation and transcription of the data, and the second phase entailed thematic analysis of the data to develop categories and themes. In this paper there is discussion on the translation process and its inherent challenges. As translation is an interpretive process and not merely a direct message transfer from a source language to a target language, translators need to systematically and accurately capture the full meaning of the spoken language. This discussion paper highlights difficulties in the translation process, specifically in managing data in relation to metaphors, medical terminology and connotation of the text, and importantly, preserving the meaning between the original and translated data. Recommendations for future qualitative studies involving interviews with non-English speaking participants are outlined, which may assist researchers maintain the integrity of the data throughout the translation process. Copyright © 2015 Elsevier Ltd. All rights reserved.

Speech profile of patients undergoing primary palatoplasty.

Science.gov (United States)

Menegueti, Katia Ignacio; Mangilli, Laura Davison; Alonso, Nivaldo; Andrade, Claudia Regina Furquim de

2017-10-26

To characterize the profile and speech characteristics of patients undergoing primary palatoplasty in a Brazilian university hospital, considering the time of intervention (early, before two years of age; late, after two years of age). Participants were 97 patients of both genders with cleft palate and/or cleft and lip palate, assigned to the Speech-language Pathology Department, who had been submitted to primary palatoplasty and presented no prior history of speech-language therapy. Patients were divided into two groups: early intervention group (EIG) - 43 patients undergoing primary palatoplasty before 2 years of age and late intervention group (LIG) - 54 patients undergoing primary palatoplasty after 2 years of age. All patients underwent speech-language pathology assessment. The following parameters were assessed: resonance classification, presence of nasal turbulence, presence of weak intraoral air pressure, presence of audible nasal air emission, speech understandability, and compensatory articulation disorder (CAD). At statistical significance level of 5% (p≤0.05), no significant difference was observed between the groups in the following parameters: resonance classification (p=0.067); level of hypernasality (p=0.113), presence of nasal turbulence (p=0.179); presence of weak intraoral air pressure (p=0.152); presence of nasal air emission (p=0.369), and speech understandability (p=0.113). The groups differed with respect to presence of compensatory articulation disorders (p=0.020), with the LIG presenting higher occurrence of altered phonemes. It was possible to assess the general profile and speech characteristics of the study participants. Patients submitted to early primary palatoplasty present better speech profile.

Academic research as human activity: Occupational Therapy contributions for consumer participation

Directory of Open Access Journals (Sweden)

Tatiana Dimov

2016-07-01

Full Text Available The involvement of consumers in research is a recent trend in the world. Involving consumers in researches on health services, therapeutic approaches, effectiveness of support groups, mutual help groups, and even on medication is crucial for obtaining academic results that are representative of the group of consumers, and influence public policies that are effective and functional for consumers. This paper presents an analysis of how consumers can get involved in a research and what can be the role of an occupational therapist in such activity. When governed by the principles of autonomy, empowerment, and recovery, researches with consumer participation promote the principles of equality and recognition, allowing inclusion in the research process, and promoting the recognition of consumer knowledge. As an activity, research can be a motivator, mobilizing wills and desires. It can also be a possibility of leaving stagnation and making decisions. The occupational therapist can help this process. Occupational therapy focus on activities that are significant to the life of individuals. Participation in research becomes a focus for the therapeutic process to the extent that it presents itself as a demand for the client.

High hospital research participation and improved colorectal cancer survival outcomes: a population-based study.

Science.gov (United States)

Downing, Amy; Morris, Eva Ja; Corrigan, Neil; Sebag-Montefiore, David; Finan, Paul J; Thomas, James D; Chapman, Michael; Hamilton, Russell; Campbell, Helen; Cameron, David; Kaplan, Richard; Parmar, Mahesh; Stephens, Richard; Seymour, Matt; Gregory, Walter; Selby, Peter

2017-01-01

In 2001, the National Institute for Health Research Cancer Research Network (NCRN) was established, leading to a rapid increase in clinical research activity across the English NHS. Using colorectal cancer (CRC) as an example, we test the hypothesis that high, sustained hospital-level participation in interventional clinical trials improves outcomes for all patients with CRC managed in those research-intensive hospitals. Data for patients diagnosed with CRC in England in 2001-2008 (n=209 968) were linked with data on accrual to NCRN CRC studies (n=30 998). Hospital Trusts were categorised by the proportion of patients accrued to interventional studies annually. Multivariable models investigated the relationship between 30-day postoperative mortality and 5-year survival and the level and duration of study participation. Most of the Trusts achieving high participation were district general hospitals and the effects were not limited to cancer 'centres of excellence', although such centres do make substantial contributions. Patients treated in Trusts with high research participation (≥16%) in their year of diagnosis had lower postoperative mortality (presearch participation, with a reduction in postoperative mortality of 1.5% (6.5%-5%, pstudies for all patients with CRC treated in the hospital study participants. Improvement precedes and increases with the level and years of sustained participation. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/.

Schizophrenia research participants' responses to protocol safeguards: recruitment, consent, and debriefing.

Science.gov (United States)

Roberts, Laura Weiss; Warner, Teddy D; Anderson, Charles T; Smithpeter, Megan V; Rogers, Melinda K

2004-04-01

To examine the perspectives and preferences regarding ethically important aspects of recruitment, consent, and debriefing of people with schizophrenia who volunteered for research protocols. A structured interview to assess research-related views of people with schizophrenia was developed and piloted. Data collection occurred at three sites. For this analysis, we examined the subset of responses from schizophrenia patients currently enrolled in a protocol. Data from 28 schizophrenia research volunteers were analyzed. Of these, 22 were men and 11 were voluntary inpatients. Most (n=23) recalled speaking with someone before enrolling in the protocol, and most (n=26) reported trusting the person who told them about it. Participants reported a moderate understanding of their protocols. All but one person (n=27) remembered signing a consent form. Twenty-one volunteers indicated that consent forms are meant to help both the patient and the researcher. Most (n=23) reported making the enrollment decision alone, with 22 making this decision prior to reviewing the consent form. The decision was described as relatively easy. Respondents felt some pressure to enroll, with women experiencing more pressure. Debriefing practices were strongly endorsed by participants. All 28 of the volunteers wished to be informed if a health problem (i.e., "something wrong") was discovered during the protocol. The persons living with schizophrenia who were interviewed for this project expressed interesting perspectives and preferences regarding ethically important aspects of recruitment, consent, and debriefing in clinical research that may help guide efforts to make research processes more attuned to participants and merit further inquiry.

Beliefs and attitudes towards participating in genetic research – a population based cross-sectional study

Directory of Open Access Journals (Sweden)

Kerath Samantha M

2013-02-01

Full Text Available Abstract Background Biobanks have the potential to offer a venue for chronic disease biomarker discovery, which would allow for disease early detection and for identification of carriers of a certain predictor biomarker. To assess the general attitudes towards genetic research and participation in biobanks in the Long Island/Queens area of New York, and what factors would predict a positive view of such research, participants from the NSLIJ hospital system were surveyed. Methods Participants were recruited at six hospital centers in the NSLIJ system during the summers of 2009 and again in 2011 (n = 1,041. Those who opted to participate were given a questionnaire containing 22 questions assessing demographics, lifestyle and attitudes towards genetic research. These questions addressed individual participant’s beliefs about the importance of genetic research, willingness to participate in genetic research themselves, and their views on informed consent issues. Results Respondents took a generally positive view of genetic research in general, as well as their own participation in such research. Those with reservations were most likely to cite concerns over the privacy of their medical and genetic information. Those who were married tended to view genetic research as important, while those in the younger age group viewed it as less important. Prior blood donation of respondents was found to be a predictor of their approval for genetic research. Demographic factors were not found to be predictive of personal willingness to participate in genetic research, or of approval for the opt-out approach to consent. Conclusions While respondents were generally inclined to approve of genetic research, and those who disapproved did not do so based on an underlying moral objection to such research, there is a disconnect between the belief in the importance of genetic research and the willingness of individuals to participate themselves. This indicates a

Women's experiences of participating in a prospective, longitudinal postpartum depression study: insights for perinatal mental health researchers.

Science.gov (United States)

Andrighetti, Heather J; Semaka, Alicia; Austin, Jehannine C

2017-08-01

Barriers to recruitment for research on mental illness include participant distrust of researchers and social stigma. Though these issues may be acutely important in perinatal mental health research, they remain unexplored in this context. In order to inform strategies to more fully engage women in perinatal mental health research, we explored the motivations and experiences of women with a history of major depressive disorder who participated in a prospective longitudinal research study on postpartum depression (PPD). Sixteen women with a history of depression who had either completed or recently made a decision about participation in a longitudinal research study about PPD were interviewed by telephone. Qualitative, semi-structured interviews explored participants' decision-making about, and experiences of, participation. Interviews were audio-recorded, transcribed, and qualitatively analyzed using elements of grounded theory methodology. Follow-up interviews were conducted with four participants to refine and clarify preliminary results. Foundational elements necessary for women to consider participating in PPD research included personal acceptance of illness and trust in the research team/institution. Other main motivators included perceived personal relevance, anticipated benefits (including access to support/resources, learning opportunities, and improved self-worth), altruism, and accessible study procedures. Our data suggest that participating in perinatal mental health research may help women make meaning of their mental illness experience and is perceived as providing support. The findings-particularly around the importance of participant-researcher rapport and accessibility of study design-may inform strategies that improve participation rates, decrease attrition, and maximize participant benefits in perinatal mental health research.

Do East Asian and Euro-Canadian women differ in sexual psychophysiology research participation?

Science.gov (United States)

Woo, Jane S T; Brotto, Lori A; Yule, Morag A

2010-07-01

Evidence from studies of ethnic differences in sexual conservativeness and Papanicolaou (Pap) testing behaviors suggests that there may be culture-linked differences in rates of participation in physically invasive sexuality studies, resulting in volunteer bias. The effects of ethnicity and acculturation on participation in female psychophysiological sexual arousal research were investigated in a sample of Euro-Canadian (n = 50) and East Asian (n = 58) women. Participants completed a battery of questionnaires and were given either course credits or $10 for their participation. Participants were then informed about the opportunity to participate in a second phase of the study, which involved psychophysiological sexual arousal testing and which was completely optional. Contrary to expectations, the results showed that the East Asian women were more likely to participate in Phase 2 than the Euro-Canadian women. Among the East Asian women, greater heritage acculturation and lower mainstream acculturation predicted a lower likelihood of Phase 2 participation. The findings suggest the need to be wary of overgeneralizing female psychophysiological sexual arousal research results and may have implications for improving Pap testing behaviors in East Asian women.

RUPS: Research Utilizing Problem Solving. Administrators Version. Participant Materials.

Science.gov (United States)

Jung, Charles; And Others

These materials are the handouts for school administrators participating in RUPS (Research Utilizing Problem Solving) workshops. The purposes of the workshops are to develop skills for improving schools and to increase teamwork skills. The handouts correspond to the 16 subsets that make up the five-day workshop: (1) orientation; (2) identifying…

Informed consent needed for sterilization or research.

Science.gov (United States)

Barnett, B

1998-01-01

Informed choice involves enabling family planning clients to base their decisions about contraceptive use upon adequate information. It is a process in which clients give their permission to undergo a procedure, take a medication, or participate in a study after being fully informed. Informed consent protects an individual's freedom of choice, respects his or her autonomy, is important in both family planning programs and reproductive health research, and should always be available to clients seeking health services. Although written informed consent is not needed for most reproductive health services, it should be obtained from men and women who undergo sterilization, since that involves surgery and is considered permanent. In addition, people who volunteer to participate in contraceptive studies need to be fully informed of the risks and benefits of any new drugs or devices they receive. Volunteers should understand the potential effects of methods upon their physical health and other aspects of their lives. Ethical reviews need to be conducted before research begins.

Cultivating Research Pedagogies with Adolescents: Created Spaces, Engaged Participation, and Embodied Inquiry

Science.gov (United States)

Wissman, Kelly K.; Staples, Jeanine M.; Vasudevan, Lalitha; Nichols, Rachel E.

2015-01-01

This paper conceptualizes an approach to adolescent literacies research we call "research pedagogies." This approach recognizes the pedagogical features of the research process and includes three dimensions: created spaces, engaged participation, and embodied inquiry. By drawing upon and sometimes recasting foundational anthropological…

Factors Influencing the Research Participation of Adults with Autism Spectrum Disorders

Science.gov (United States)

Haas, Kaaren; Costley, Debra; Falkmer, Marita; Richdale, Amanda; Sofronoff, Kate; Falkmer, Torbjörn

2016-01-01

Recruiting adults with autism spectrum disorders (ASD) into research poses particular difficulties; longitudinal studies face additional challenges. This paper reports on a mixed methods study to identify factors influencing the participation in longitudinal autism research of adults with ASD, including those with an intellectual disability, and…

Strategies to address participant misrepresentation for eligibility in Web-based research.

Science.gov (United States)

Kramer, Jessica; Rubin, Amy; Coster, Wendy; Helmuth, Eric; Hermos, John; Rosenbloom, David; Moed, Rich; Dooley, Meghan; Kao, Ying-Chia; Liljenquist, Kendra; Brief, Deborah; Enggasser, Justin; Keane, Terence; Roy, Monica; Lachowicz, Mark

2014-03-01

Emerging methodological research suggests that the World Wide Web ("Web") is an appropriate venue for survey data collection, and a promising area for delivering behavioral intervention. However, the use of the Web for research raises concerns regarding sample validity, particularly when the Web is used for recruitment and enrollment. The purpose of this paper is to describe the challenges experienced in two different Web-based studies in which participant misrepresentation threatened sample validity: a survey study and an online intervention study. The lessons learned from these experiences generated three types of strategies researchers can use to reduce the likelihood of participant misrepresentation for eligibility in Web-based research. Examples of procedural/design strategies, technical/software strategies and data analytic strategies are provided along with the methodological strengths and limitations of specific strategies. The discussion includes a series of considerations to guide researchers in the selection of strategies that may be most appropriate given the aims, resources and target population of their studies. Copyright © 2014 John Wiley & Sons, Ltd.

Social participation: redesign of education, research, and practice in occupational therapy*.

Science.gov (United States)

Piškur, Barbara

2013-01-01

There is growing attention to participation and social participation in literature and policy reports. Occupational therapists strongly believe that creating coherence between the person's occupations and environment will facilitate participation of each individual. Nowadays, societal developments such as "health literacy and self-management", "Web 2.0 social media", "empowering communities", and "Nothing About Us Without Us" increase opportunities for people to interact on different levels of social participation. Social participation can be used as an outcome, though it can also be seen as a means to change society and to develop solutions for barriers experienced by people with chronic diseases or disabilities. Societal developments will have an impact on social participation in terms of supporting each other and contributing to society. Additionally, these changes will have a major influence on the way we educate, conduct research, and deliver occupational therapy practice.

Sense and readability: participant information sheets for research studies.

Science.gov (United States)

Ennis, Liam; Wykes, Til

2016-02-01

Informed consent in research is partly achieved through the use of information sheets. There is a perception however that these information sheets are long and complex. The recommended reading level for patient information is grade 6, or 11-12 years old. To investigate whether the readability of participant information sheets has changed over time, whether particular study characteristics are related to poorer readability and whether readability and other study characteristics are related to successful study recruitment. Method: We obtained 522 information sheets from the UK National Institute for Health Research Clinical Research Network: Mental Health portfolio database and study principal investigators. Readability was assessed with the Flesch reading index and the Grade level test. Information sheets increased in length over the study period. The mean grade level across all information sheets was 9.8, or 15-16 years old. A high level of patient involvement was associated with more recruitment success and studies involving pharmaceutical or device interventions were the least successful. The complexity of information sheets had little bearing on successful recruitment. Information sheets are far more complex than the recommended reading level of grade 6 for patient information. The disparity may be exacerbated by an increasing focus on legal content. Researchers would benefit from clear guidance from ethics committees on writing succinctly and accessibly and how to balance the competing legal issues with the ability of participants to understand what a study entails. © The Royal College of Psychiatrists 2016.

ASPIRE: Active Societal Participation in Research and Education

Science.gov (United States)

Garza, C.; Parrish, J.; Harris, L.; Posselt, J.; Hatch, M.

2017-12-01

Active Societal Participation In Research and Education (ASPIRE) aims to cultivate a generation of geoscientists with the leadership knowledge and skills, scholarship, and material support to reframe and rebrand the geosciences as socially relevant and, thereby, to broaden participation in these fields. This generation of geoscientists will do so by bridging longstanding divides that impede access to and inclusion in the geosciences: between basic and applied science, between scholars in the academy and members of historically marginalized communities, and between the places where science is needed and the places where it is typically conducted. To bring about these types of change, we draw upon, refine, and institutionalize the working group model as the Mobile Working Group (MWG), directly referencing the need to move outside of the "ivory tower" and into the community. Led by a geoscientist with one foot in the academy and the other in the community - the Boundary Spanner - each MWG will focus on a single issue linked to a single community. ASPIRE supports multiple MWGs working across the geographic, ethnographic and "in practice" community space, as well as across the body of geoscience research and application. We hypothesize that in institutionalizing a new mode of geoscience research (MWG), learning from Boundary Spanners experiences with MWG, and refining a leadership development program from our findings, that we will have a scalable leadership tool and organizational structure that will rebrand the geosciences as socially relevant and inclusive of geoscientists from diverse backgrounds even as the "science space" of geoscience expands to incorporate in-community work.

Informing potential participants about research: observational study with an embedded randomized controlled trial.

Directory of Open Access Journals (Sweden)

Helen M Kirkby

Full Text Available OBJECTIVES: To assess: 1 the feasibility of electronic information provision; 2 gather evidence on the topics and level of detail of information potential research participant's accessed; 3 to assess satisfaction and understanding. DESIGN: Observational study with an embedded randomised controlled trial. SETTING: Low risk intervention study based in primary care. PARTICIPANTS: White British & Irish, South Asian and African-Caribbean subjects aged between 40-74 years eligible for a blood pressure monitoring study. INTERVENTIONS: PDF copy of the standard paper participant information sheet (PDF-PIS and an electronic Interactive Information Sheet (IIS where participants could choose both the type and level of detail accessed. MAIN OUTCOME MEASURES: 1 Proportion of participants providing an email address and accessing electronic information 2 Willingness to participate in a recruitment clinic. 3 Type and depth of information accessed on the IIS. 4 Participant satisfaction and understanding. RESULTS: 1160 participants were eligible for the study. Of these, 276 (24% provided an active email address, of whom 84 did not respond to the email. 106 responded to the email but chose not to access any electronic information and were therefore ineligible for randomisation. 42 were randomised to receive the PDF-PIS and 44 to receive the IIS (with consent rates of 48% and 36%, respectively; odds ratio 0.6, 95% confidence interval 0.25 to 1.4. Electronic observation of information accessed by potential participants showed 41% chose to access no information and only 9% accessed the detail presented on the Research Ethics Committee approved participant information sheet before booking to attend a recruitment clinic for the intervention study. 63 of the 106 participants (59% who chose not to access any electronic information also booked an appointment. CONCLUSIONS: Current written information about research may not be read, emphasising the importance of the consent

Comparisons of the utility of researcher-defined and participant-defined successful ageing.

Science.gov (United States)

Brown, Lynsey J; Bond, Malcolm J

2016-03-01

To investigate the impact of different approaches for measuring 'successful ageing', four alternative researcher and participant definitions were compared, including a novel measure informed by cluster analysis. Rates of successful ageing were explored, as were their relative associations with age and measures of successful adaptation, to assess construct validity. Participants, aged over 65, were recruited from community-based organisations. Questionnaires (assessing successful ageing, lifestyle activities and selective optimisation with compensation) were completed by 317 individuals. Successful ageing ranged from 11.4% to 87.4%, with higher rates evident from participant definitions. Though dependent upon the definition, successful agers were typically younger, reported greater engagement with lifestyle activities and more frequent optimisation. While the current study suggested an improved classification algorithm using a common research definition, future research should explore how subjective and objective aspects of successful ageing may be combined to derive a measure relevant to policy and practice. © 2016 AJA Inc.

Human Participants in Engineering Research: Notes from a Fledgling Ethics Committee.

Science.gov (United States)

Koepsell, David; Brinkman, Willem-Paul; Pont, Sylvia

2015-08-01

For the past half-century, issues relating to the ethical conduct of human research have focused largely on the domain of medical, and more recently social-psychological research. The modern regime of applied ethics, emerging as it has from the Nuremberg trials and certain other historical antecedents, applies the key principles of: autonomy, respect for persons, beneficence, non-maleficence, and justice to human beings who enter trials of experimental drugs and devices (Martensen in J Hist Med Allied Sci 56(2):168-175, 2001). Institutions such as Institutional Review Boards (in the U.S.) and Ethics Committees (in Europe and elsewhere) oversee most governmentally-funded medical research around the world, in more than a hundred nations that are signers of the Declaration of Helsinki (World Medical Association 2008). Increasingly, research outside of medicine has been recognized to pose potential risks to human subjects of experiments. Ethics committees now operate in the US, Canada, the U.K. and Australia to oversee all governmental-funded research, and in other jurisdictions, the range of research covered by such committees is expanding. Social science, anthropology, and other fields are falling under more clear directives to conduct a formal ethical review for basic research involving human participants (Federman et al. in Responsible research: a systems approach to protecting research participants. National Academies Press, Washington, 2003, p. 36). The legal and institutional response for protecting human subjects in the course of developing non-medical technologies, engineering, and design is currently vague, but some universities are establishing ethics committees to oversee their human subjects research even where the experiments involved are non-medical and not technically covered by the Declaration of Helsinki. In The Netherlands, as in most of Europe, Asia, Latin America, or Africa, no laws mandate an ethical review of non-medical research. Yet, nearly 2

The limitations of language: male participants, stoicism, and the qualitative research interview.

Science.gov (United States)

Affleck, William; Glass, Kc; Macdonald, Mary Ellen

2013-03-01

The semistructured, open-ended interview has become the gold standard for qualitative health research. Despite its strengths, the long interview is not well suited for studying topics that participants find difficult to discuss, or for working with those who have limited verbal communication skills. A lack of emotional expression among male research participants has repeatedly been described as a significant and pervasive challenge by health researchers in a variety of different fields. This article explores several prominent theories for men's emotional inexpression and relates them to qualitative health research. The authors argue that investigators studying emotionally sensitive topics with men should look beyond the long interview to methods that incorporate other modes of emotional expression. This article concludes with a discussion of several such photo-based methods, namely, Photovoice, Photo Elicitation, and Visual Storytelling.

Promoting the legitimacy and agency of new graduate nurses' participation in nursing research.

Science.gov (United States)

Matikainen, Mary Ann

2017-06-01

This paper explores the legitimacy and agency of new graduate mental health nurses to participate in research activities as a regular part of their professional nursing role. There is a wealth of literature describing personal and organisational factors that act as barriers to nurses' engagement in research and overcoming these barriers remains a challenge for health organisations. Some new graduate nurses are well positioned to contribute to research and yet the literature has given little attention to this specific cohort. This paper will show how facilitating new graduates' participation in research benefits the new graduate and the health service. New graduates learn research skills from experienced researchers and this ensures a sustainable future workforce of researchers. Employers who support staff to pursue professional challenges such as research are more likely to generate organisational commitment and loyalty amongst staff.

Strategies for Enhancing Family Participation in Research in the ICU: Findings From a Qualitative Study.

Science.gov (United States)

Dotolo, Danae; Nielsen, Elizabeth L; Curtis, J Randall; Engelberg, Ruth A

2017-08-01

Family members of critically ill patients who participate in research focused on palliative care issues have been found to be systematically different from those who do not. These differences threaten the validity of research and raise ethical questions about worsening disparities in care by failing to represent diverse perspectives. This study's aims were to explore: 1) barriers and facilitators influencing family members' decisions to participate in palliative care research; and 2) potential methods to enhance research participation. Family members who were asked to participate in a randomized trial testing the efficacy of a facilitator to improve clinician-family communication in the intensive care unit (ICU). Family members who participated (n = 17) and those who declined participation (n = 7) in Family Communication Study were interviewed about their recruitment experiences. We also included family members of currently critically ill patients to assess current experiences (n = 4). Interviews were audio-recorded and transcribed. Investigators used thematic analysis to identify factors influencing family members' decisions. Transcripts were co-reviewed to synthesize codes and themes. Three factors influencing participants' decisions were identified: Altruism, Research Experience, and Enhanced Resources. Altruism and Research Experience described intrinsic characteristics that are less amenable to strategies for improving participation rates. Enhanced Resources reflects families' desires for increased access to information and logistical and emotional support. Family members found their recruitment experiences to be positive when staff were knowledgeable about the ICU, sensitive to the stressful circumstances, and conveyed a caring attitude. By training research staff to be supportive of families' emotional needs and need for logistical knowledge about the ICU, recruitment of a potentially more diverse sample of families may be enhanced. Copyright © 2017

Facebook: an effective tool for participant retention in longitudinal research.

Science.gov (United States)

Mychasiuk, R; Benzies, K

2012-09-01

Facebook is currently one of the world's most visited websites, and home to millions of users who access their accounts on a regular basis. Owing to the website's ease of accessibility and free service, demographic characteristics of users span all domains. As such, Facebook may be a valuable tool for locating and communicating with participants in longitudinal research studies. This article outlines the benefit gained in a longitudinal follow-up study, of an intervention programme for at-risk families, through the use of Facebook as a search engine. Using Facebook as a resource, we were able to locate 19 participants that were otherwise 'lost' to follow-up, decreasing attrition in our study by 16%. Additionally, analysis indicated that hard-to-reach participants located with Facebook differed significantly on measures of receptive language and self-esteem when compared to their easier-to-locate counterparts. These results suggest that Facebook is an effective means of improving participant retention in a longitudinal intervention study and may help improve study validity by reaching participants that contribute differing results. © 2011 Blackwell Publishing Ltd.

A participatory study of teenagers and young adults views on access and participation in cancer research.

Science.gov (United States)

Taylor, Rachel M; Solanki, Anita; Aslam, Natasha; Whelan, Jeremy S; Fern, Lorna A

2016-02-01

The purpose of this study was to elicit young people's views on access and participation in cancer research. Eight young people aged 18-25 years with a previous cancer diagnosis aged 15-24 participated in a one day workshop utilising participatory methodology. The workshop consisted of four exercises: role play/scene setting; focus group examining thoughts and opinions of research access and participation; individual reflection on access to different types of research; and creative interpretation of the workshop. Further consultation with 222 young people with cancer was conducted using an electronic survey. Three themes emerged: • Patient choice: Young people thought it was their right to know all options about available research. Without knowledge of all available studies they would be unable to make an informed choice about participation. • Role of healthcare professionals as facilitators/barriers: Young people suggested non-clinical healthcare professionals such as social workers and youth support coordinators may be more suited to approaching young people about participation in psychosocial and health services research. • Value of the research: The what, when and how information was delivered was key in relaying the value of the study and assisting young people in their decision to participate. Further consultation showed approximately 70% wanted to find out about all available research. However, one third trusted healthcare professionals to decide which research studies to inform them of. Effective ways to support healthcare professionals approaching vulnerable populations about research are needed to ensure young people are empowered to make informed choices about research participation. Copyright © 2015 Elsevier Ltd. All rights reserved.

Researcher-driven Campaigns Engage Nature's Notebook Participants in Scientific Data Collection

Science.gov (United States)

Crimmins, Theresa M.; Elmore, Andrew J.; Huete, Alfredo; Keller, Stephen; Levetin, Estelle; Luvall, Jeffrey; Meyers, Orrin; Stylinski, Cathlyn D.; Van De Water, Peter K.; Vukovic, Ana

2013-01-01

One of the many benefits of citizen science projects is the capacity they hold for facilitating data collection on a grand scale and thereby enabling scientists to answer questions they would otherwise not been able to address. Nature's Notebook, the plant and animal phenology observing program of the USA National Phenology Network (USA-NPN) suitable for scientists and non-scientists alike, offers scientifically-vetted data collection protocols and infrastructure and mechanisms to quickly reach out to hundreds to thousands of potential contributors. The USA-NPN has recently partnered with several research teams to engage participants in contributing to specific studies. In one example, a team of scientists from NASA, the New Mexico Department of Health, and universities in Arizona, New Mexico, Oklahoma, and California are using juniper phenology observations submitted by Nature's Notebookparticipants to improve predictions of pollen release and inform asthma and allergy alerts. In a second effort, researchers from the University of Maryland Center for Environmental Science are engaging Nature's Notebookparticipants in tracking leafing phenophases of poplars across the U.S. These observations will be compared to information acquired via satellite imagery and used to determine geographic areas where the tree species are most and least adapted to predicted climate change. Researchers in these partnerships receive benefits primarily in the form of ground observations. Launched in 2010, the juniper pollen effort has engaged participants in several western states and has yielded thousands of observations that can play a role in model ground validation. Periodic evaluation of these observations has prompted the team to improve and enhance the materials that participants receive, in an effort to boost data quality. The poplar project is formally launching in spring of 2013 and will run for three years; preliminary findings from 2013 will be presented. Participants in these

Multiple Comorbidities and Interest in Research Participation Among Clients of a Nonprofit Food Distribution Site.

Science.gov (United States)

Higashi, Robin T; Craddock Lee, Simon J; Leonard, Tammy; Cuate, Erica L; Cole, Jay; Pruitt, Sandi L

2015-10-01

Persons accessing food from nonprofit distribution sites face numerous challenges and typically have significant unmet health needs. However, given limited and intermittent healthcare system engagement, this vulnerable population is underrepresented in clinical research. We sought to better understand the health needs of a nonclinical population to inform future research and interventions. Focus groups were conducted in English (n = 4) and Spanish (n = 4) with clients of Crossroads Community Services (CCS), the largest distributor of North Texas Food Bank. Discussions probed participants' health status, healthcare utilization, understanding and utilization of mammography, and attitudes toward participation in research. Participants included 42 CCS clients, primarily Hispanic or African American women. Participants reported multiple comorbid conditions among household members, yet utilization of health services was often limited by cost. The majority expressed interest in participating in research to communicate their health concerns and obtain emotional support. CCS clients represent a high-need, under-reached population willing to engage in health-related research that affords them opportunity to connect with peers in group settings and obtain information to improve management of daily life challenges. The Community Assistance Research (CARe) Initiative, a community-academic collaboration, establishes a much-needed opportunity for ongoing clinical research and intervention among this underserved population. © 2015 Wiley Periodicals, Inc.

Red blood cell transfusion for people undergoing hip fracture surgery.

Science.gov (United States)

Brunskill, Susan J; Millette, Sarah L; Shokoohi, Ali; Pulford, E C; Doree, Carolyn; Murphy, Michael F; Stanworth, Simon

2015-04-21

transfusion thresholds in postoperative morbidity for the following complications: thromboembolism (RR 1.15 favouring a restrictive threshold, 95% CI 0.56 to 2.37; four trials; 2416 participants), stroke (RR 2.40 favouring a restrictive threshold, 95% CI 0.85 to 6.79; four trials; 2416 participants), wound infection (RR 1.61 favouring a restrictive threshold, 95% CI 0.77 to 3.35; three trials; 2332 participants), respiratory infection (pneumonia) (RR 1.35 favouring a restrictive threshold, 95% CI 0.95 to 1.92; four trials; 2416 participants) and new diagnosis of congestive heart failure (RR 0.77 favouring a liberal threshold, 95% CI 0.48 to 1.23; three trials; 2332 participants). There was very low quality evidence of a lower risk of myocardial infarction in the liberal compared with the restrictive transfusion threshold group (RR 0.59, 95% CI 0.36 to 0.96; three trials; 2217 participants). Assuming an illustrative baseline risk of myocardial infarction of 24 per 1000 participants in the restricted threshold group, this result was compatible with between one and 15 fewer myocardial infarctions in the liberal threshold group. We found low quality evidence of no difference in mortality, functional recovery or postoperative morbidity between 'liberal' versus 'restrictive' thresholds for red blood cell transfusion in people undergoing surgery for hip fracture. Although further research may change the estimates of effect, the currently available evidence does not support the use of liberal red blood cell transfusion thresholds based on a 10 g/dL haemoglobin trigger in preference to more restrictive transfusion thresholds based on lower haemoglobin levels or symptoms of anaemia in these people. Future research needs to address the effectiveness of red blood cell transfusions at different time points in the surgical pathway, whether pre-operative, peri-operative or postoperative. In particular, such research would need to consider people who are symptomatic or haemodynamically

75 FR 68360 - Agency Forms Undergoing Paperwork Reduction Act Review

Science.gov (United States)

2010-11-05

...] Agency Forms Undergoing Paperwork Reduction Act Review The Centers for Disease Control and Prevention... screener questionnaire will be used to determine participation eligibility and obtain oral consent. Approximately 7,000 individuals will be approached and screened (through a 2-minute interview) for eligibility...

Procedures of recruiting, obtaining informed consent, and compensating research participants in Qatar: findings from a qualitative investigation.

Science.gov (United States)

Killawi, Amal; Khidir, Amal; Elnashar, Maha; Abdelrahim, Huda; Hammoud, Maya; Elliott, Heather; Thurston, Michelle; Asad, Humna; Al-Khal, Abdul Latif; Fetters, Michael D

2014-02-04

Very few researchers have reported on procedures of recruiting, obtaining informed consent, and compensating participants in health research in the Arabian Gulf Region. Empirical research can inform the debate about whether to adjust these procedures for culturally diverse settings. Our objective was to delineate procedures related to recruiting, obtaining informed consent, and compensating health research participants in the extremely high-density multicultural setting of Qatar. During a multistage mixed methods project, field observations and qualitative interviews were conducted in a general medicine clinic of a major medical center in Qatar. Participants were chosen based on gender, age, literacy, and preferred language, i.e., Arabic, English, Hindi and Urdu. Qualitative analysis identified themes about recruitment, informed consent, compensation, and other research procedures. A total of 153 individuals were approached and 84 enrolled; the latter showed a diverse age range (18 to 75 years); varied language representation: Arabic (n = 24), English (n = 20), Hindi (n = 20), and Urdu (n = 20); and balanced gender distribution: women (n = 43) and men (n = 41). Primary reasons for 30 declinations included concern about interview length and recording. The study achieved a 74% participation rate. Qualitative analytics revealed key themes about hesitation to participate, decisions about participation with family members as well as discussions with them as "incidental research participants", the informed consent process, privacy and gender rules of the interview environment, reactions to member checking and compensation, and motivation for participating. Vulnerability emerged as a recurring issue throughout the process among a minority of participants. This study from Qatar is the first to provide empirical data on recruitment, informed consent, compensation and other research procedures in a general adult population in the Middle East and Arabian Gulf. This

Views of potential research participants on financial conflicts of interest: barriers and opportunities for effective disclosure.

Science.gov (United States)

Weinfurt, Kevin P; Friedman, Joëlle Y; Allsbrook, Jennifer S; Dinan, Michaela A; Hall, Mark A; Sugarman, Jeremy

2006-09-01

There is little guidance regarding how to disclose researchers' financial interests to potential research participants. To determine what potential research participants want to know about financial interests, their capacity to understand disclosed information and its implications, and the reactions of potential research participants to a proposed disclosure statement. Sixteen focus groups in 3 cities, including 6 groups of healthy adults, 6 groups of adults with mild chronic illness, 1 group of parents of healthy children, 1 group of parents of children with leukemia or brain tumor, 1 group of adults with heart failure, and 1 group of adults with cancer. Focus group discussions covered a range of topics including financial relationships in clinical research, whether people should be told about them, and how they should be told. Audio-recordings of focus groups were transcribed, verified, and coded for analysis. Participants wanted to know about financial interests, whether or not those interests would affect their participation. However, they varied in their desire and ability to understand the nature and implications of financial interests. Whether disclosure was deemed important depended upon the risk of the research. Trust in clinicians was also related to views regarding disclosure. If given the opportunity to ask questions during the consent process, some participants would not have known what to ask; however, after the focus group sessions, participants could identify information they would want to know. Financial interests are important to potential research participants, but obstacles to effective disclosure exist.

Balancing the risks and benefits of genomic data sharing: genome research participants' perspectives.

Science.gov (United States)

Oliver, J M; Slashinski, M J; Wang, T; Kelly, P A; Hilsenbeck, S G; McGuire, A L

2012-01-01

Technological advancements are rapidly propelling the field of genome research forward, while lawmakers attempt to keep apace with the risks these advances bear. Balancing normative concerns of maximizing data utility and protecting human subjects, whose privacy is at risk due to the identifiability of DNA data, are central to policy decisions. Research on genome research participants making real-time data sharing decisions is limited; yet, these perspectives could provide critical information to ongoing deliberations. We conducted a randomized trial of 3 consent types affording varying levels of control over data release decisions. After debriefing participants about the randomization process, we invited them to a follow-up interview to assess their attitudes toward genetic research, privacy and data sharing. Participants were more restrictive in their reported data sharing preferences than in their actual data sharing decisions. They saw both benefits and risks associated with sharing their genomic data, but risks were seen as less concrete or happening in the future, and were largely outweighed by purported benefits. Policymakers must respect that participants' assessment of the risks and benefits of data sharing and their privacy-utility determinations, which are associated with their final data release decisions, vary. In order to advance the ethical conduct of genome research, proposed policy changes should carefully consider these stakeholder perspectives. Copyright © 2011 S. Karger AG, Basel.

Participation in medical research as a resource-seeking strategy in socio-economically vulnerable communities: call for research and action.

Science.gov (United States)

Ravinetto, Raffaella M; Afolabi, Muhammed O; Okebe, Joseph; Van Nuil, Jennifer Ilo; Lutumba, Pascal; Mavoko, Hypolite Muhindo; Nahum, Alain; Tinto, Halidou; Addissie, Adamu; D'Alessandro, Umberto; Grietens, Koen Peeters

2015-01-01

The freedom to consent to participate in medical research is a complex subject, particularly in socio-economically vulnerable communities, where numerous factors may limit the efficacy of the informed consent process. Informal consultation among members of the Switching the Poles Clinical Research Network coming from various sub-Saharan African countries, that is Burkina Faso, The Gambia, Rwanda, Ethiopia, the Democratic Republic of Congo (DRC) and Benin, seems to support the hypothesis that in socio-economical vulnerable communities with inadequate access to health care, the decision to participate in research is often taken irrespectively of the contents of the informed consent interview, and it is largely driven by the opportunity to access free or better quality care and other indirect benefits. Populations' vulnerability due to poverty and/or social exclusion should obviously not lead to exclusion from medical research, which is most often crucially needed to address their health problems. Nonetheless, to reduce the possibility of exploitation, there is the need to further investigate the complex links between socio-economical vulnerability, access to health care and individual freedom to decide on participation in medical research. This needs bringing together clinical researchers, social scientists and bioethicists in transdisciplinary collaborative research efforts that require the collective input from researchers, research sponsors and funders. © 2014 John Wiley & Sons Ltd.

The influence of race and ethnicity on becoming a human subject: Factors associated with participation in research

Directory of Open Access Journals (Sweden)

Mary A. Garza, PhD

2017-09-01

Full Text Available Inroduction: The purpose of this study was to explore factors associated with willingness of African Americans and Latinos to participate in biomedical and public health research and to delineate factors that influence the decision to become a human subject. Methods: We present results from a 2010 random digit-dial telephone survey of 2,455 African American (N = 1191 and Latino (N = 1264 adults. We used standard measures to assess knowledge of research, terminology, informed consent procedures, previous participation in research, health care experiences, social support, risk perception, religiousness, and trust. Results: Over 60% of both African Americans and Latinos reported they believed people in medical research are pressured into participating. Over 50% said that it was not at all important to have someone of the same race/ethnicity ask them to participate. In a sub-sample of 322 African Americans and 190 Latinos who had previously been asked to participate in a research study, 63% of African Americans and 65% of Latinos consented to participate in a study. Finally, both African Americans (57% and Latinos (68% reported willingness to participate in future research. Overall, the multivariate analysis explained 29% of the variability in willingness to participate in future research. Conclusions: Results suggest that African Americans and Latinos have no automatic predisposition to decline participation in research studies. These results can inform culturally tailored interventions for ethical recruitment of minorities into research and clinical trials.

Clinical verification of genetic results returned to research participants: findings from a Colon Cancer Family Registry.

Science.gov (United States)

Laurino, Mercy Y; Truitt, Anjali R; Tenney, Lederle; Fisher, Douglass; Lindor, Noralane M; Veenstra, David; Jarvik, Gail P; Newcomb, Polly A; Fullerton, Stephanie M

2017-11-01

The extent to which participants act to clinically verify research results is largely unknown. This study examined whether participants who received Lynch syndrome (LS)-related findings pursued researchers' recommendation to clinically verify results with testing performed by a CLIA-certified laboratory. The Fred Hutchinson Cancer Research Center site of the multinational Colon Cancer Family Registry offered non-CLIA individual genetic research results to select registry participants (cases and their enrolled relatives) from 2011 to 2013. Participants who elected to receive results were counseled on the importance of verifying results at a CLIA-certified laboratory. Twenty-six (76.5%) of the 34 participants who received genetic results completed 2- and 12-month postdisclosure surveys; 42.3% of these (11/26) participated in a semistructured follow-up interview. Within 12 months of result disclosure, only 4 (15.4%) of 26 participants reported having verified their results in a CLIA-certified laboratory; of these four cases, all research and clinical results were concordant. Reasons for pursuing clinical verification included acting on the recommendation of the research team and informing future clinical care. Those who did not verify results cited lack of insurance coverage and limited perceived personal benefit of clinical verification as reasons for inaction. These findings suggest researchers will need to address barriers to seeking clinical verification in order to ensure that the intended benefits of returning genetic research results are realized. © 2017 The Authors. Molecular Genetics & Genomic Medicine published by Wiley Periodicals, Inc.

Redes En Acción. Increasing Hispanic participation in cancer research, training, and awareness.

Science.gov (United States)

Ramirez, Amelie G; Talavera, Gregory A; Marti, Jose; Penedo, Frank J; Medrano, Martha A; Giachello, Aida L; Pérez-Stable, Eliseo J

2006-10-15

Hispanics are affected by many health care disparities. The National Cancer Institute (NCI), through its Special Populations Branch, is supporting networking and capacity-building activities designed to increase Hispanic participation and leadership in cancer research. Redes En Acción established a national network of cancer research centers, community-based organizations, and federal partners to facilitate opportunities for junior Hispanic scientists to participate in training and research projects on cancer control. Since 2000, Redes En Acción has established a network of more than 1800 Hispanic leaders involved in cancer research and education. The project has sustained 131 training positions and submitted 29 pilot projects to NCI for review, with 16 awards for a total of $800,000, plus an additional $8.8 million in competing grant funding based on pilot study results to date. Independent research has leveraged an additional $32 million in non-Redes funding, and together the national and regional network sites have participated in more than 1400 community and professional awareness events. In addition, the program conducted extensive national survey research that provided the basis for the Redes En Acción Latino Cancer Report, a national agenda on Hispanic cancer issues. Redes En Acción has increased participation in cancer control research, training, and awareness among Hispanic scientists and within Hispanic communities. Cancer 2006. (c) 2006 American Cancer Society.

Diagnostic Labels, Stigma, and Participation in Research Related to Dementia and Mild Cognitive Impairment

Science.gov (United States)

Garand, Linda; Lingler, Jennifer H.; Conner, Kyaien O.; Dew, Mary Amanda

2010-01-01

Health care professionals use diagnostic labels to classify individuals for both treatment and research purposes. Despite their clear benefits, diagnostic labels also serve as cues that activate stigma and stereotypes. Stigma associated with the diagnostic labels of dementia and mild cognitive impairment (MCI) can have a significant and negative impact on interpersonal relationships, interactions with the health care community, attitudes about service utilization, and participation in clinical research. The impact of stigma also extends to the family caregivers of individuals bearing such labels. In this article, we use examples from our investigations of individuals with dementia or MCI and their family caregivers to examine the impact of labeling and stigma on clinical research participation. We also discuss how stigma can affect numerous aspects of the nursing research process. Strategies are presented for addressing stigma-related barriers to participation in clinical research on dementia and MCI. PMID:20077972

Community pharmacist participation in a practice-based research network: a report from the Medication Safety Research Network of Indiana (Rx-SafeNet).

Science.gov (United States)

Patel, Puja; Hemmeger, Heather; Kozak, Mary Ann; Gernant, Stephanie A; Snyder, Margie E

2015-01-01

To describe the experiences and opinions of pharmacists serving as site coordinators for the Medication Safety Research Network of Indiana (Rx-SafeNet). Retail chain, independent, and hospital/health system outpatient community pharmacies throughout Indiana, with a total of 127 pharmacy members represented by 26 site coordinators. Rx-SafeNet, a statewide practice-based research network (PBRN) formed in 2010 and administered by the Purdue University College of Pharmacy. Barriers and facilitators to participation in available research studies, confidence participating in research, and satisfaction with overall network communication. 22 of 26 site coordinators participated, resulting in an 85% response rate. Most (72.2%) of the respondents had received a doctor of pharmacy degree, and 13.6% had postgraduate year (PGY)1 residency training. The highest reported benefits of PBRN membership were an enhanced relationship with the Purdue University College of Pharmacy (81% agreed or strongly agreed) and enhanced professional development (80% agreed or strongly agreed). Time constraints were identified as the greatest potential barrier to network participation, reported by 62% of respondents. In addition, the majority (59%) of survey respondents identified no prior research experience. Last, respondents' confidence in performing research appeared to increase substantially after becoming network members, with 43% reporting a lack of confidence in engaging in research before joining the network compared with 90% reporting confidence after joining the network. In general, Rx-SafeNet site coordinators appeared to experience increased confidence in research engagement after joining the network. While respondents identified a number of benefits associated with network participation, concerns about potential time constraints remained a key barrier to participation. These findings will assist network leadership in identifying opportunities to positively increase member participation

Adapting an evidence-based model to retain adolescent study participants in longitudinal research.

Science.gov (United States)

Davis, Erin; Demby, Hilary; Jenner, Lynne Woodward; Gregory, Alethia; Broussard, Marsha

2016-02-01

Maintaining contact with and collecting outcome data from adolescent study participants can present a significant challenge for researchers conducting longitudinal studies. Establishing an organized and effective protocol for participant follow-up is crucial to reduce attrition and maintain high retention rates. This paper describes our methods in using and adapting the evidence-based Engagement, Verification, Maintenance, and Confirmation (EVMC) model to follow up with adolescents 6 and 12 months after implementation of a health program. It extends previous research by focusing on two key modifications to the model: (1) the central role of cell phones and texting to maintain contact with study participants throughout the EVMC process and, (2) use of responsive two-way communication between staff and participants and flexible administration modes and methods in the confirmation phase to ensure that busy teens not only respond to contacts, but also complete data collection. These strategies have resulted in high overall retention rates (87-91%) with adolescent study participants at each follow-up data collection point without the utilization of other, more involved tracking measures. The methods and findings presented may be valuable for other researchers with limited resources planning for or engaged in collecting follow-up outcome data from adolescents enrolled in longitudinal studies. Copyright © 2015. Published by Elsevier Ltd.

Participant dropout as a function of survey length in internet-mediated university studies: implications for study design and voluntary participation in psychological research.

Science.gov (United States)

Hoerger, Michael

2010-12-01

Internet-mediated research has offered substantial advantages over traditional laboratory-based research in terms of efficiently and affordably allowing for the recruitment of large samples of participants for psychology studies. Core technical, ethical, and methodological issues have been addressed in recent years, but the important issue of participant dropout has received surprisingly little attention. Specifically, web-based psychology studies often involve undergraduates completing lengthy and time-consuming batteries of online personality questionnaires, but no known published studies to date have closely examined the natural course of participant dropout during attempted completion of these studies. The present investigation examined participant dropout among 1,963 undergraduates completing one of six web-based survey studies relatively representative of those conducted in university settings. Results indicated that 10% of participants could be expected to drop out of these studies nearly instantaneously, with an additional 2% dropping out per 100 survey items included in the study. For individual project investigators, these findings hold ramifications for study design considerations, such as conducting a priori power analyses. The present results also have broader ethical implications for understanding and improving voluntary participation in research involving human subjects. Nonetheless, the generalizability of these conclusions may be limited to studies involving similar design or survey content.

Financial disclosure and clinical research: what is important to participants?

Science.gov (United States)

Hutchinson, Anastasia; Rubinfeld, Abe R

2008-08-18

To assess what participants in company-sponsored clinical trials wish to know about financial aspects of the study. Cross-sectional questionnaire administered to 324 participants in six clinical trials conducted at the Royal Melbourne Hospital in 1999-2000 and 2006 for non-acute conditions (asthma, chronic obstructive pulmonary disease, osteoporosis, rheumatoid arthritis, diabetes and influenza vaccine efficacy). Participants' desire for information on study funding, investigators' conflicts of interest, and use of accrued funds. 259 participants (80%) completed the survey. Participants wanted to be informed about the identity of the project sponsor (148 participants; 57%), whether the investigators owned shares in the company (105; 41%) or received travel grants (83; 32%), how much funding was accrued at study completion (88; 34%), how accrued funds were used (98; 38%), and who approved their use (91; 35%). After adjusting for year of survey and level of education, younger subjects (aged informed more often than older participants of who sponsored the project (odds ratio [OR], 2.35 [95% CI, 1.21-4.55]; P=0.012), whether the investigators owned shares in the company (OR, 2.41 [95% CI, 1.27-4.60]; P=0.007) and how much funding was available for other uses (OR, 1.79 [95% CI, 0.94-3.41]; P=0.078). While most participants indicated that they would take part in clinical research again regardless of whether they received financial information, providing information on the sponsor, the investigators' financial interest in the company, whether accrual of funds is expected, and how these funds will be spent should satisfy the interests of participants in company-sponsored clinical trials.

Participant observation, anthropology methodology and design anthropology research inquiry

DEFF Research Database (Denmark)

Gunn, Wendy; Buch Løgstrup, Louise

2014-01-01

of practice. They do so by combining participant observation, anthropology methodology and design anthropology research inquiry engaging with practice based explorations to understand if methods and methodologies, understood as being central to anthropological inquiry, can be taught to interaction design...... engineering students studying in an engineering faculty and engineers working in an energy company. They ask how do you generate anthropological capacities with interaction design engineering students engaged in engineering design processes and employees of an energy company setting out to reframe...... their relation with the private end user? What kind of ways can engaging within collaborative processes of designing offer opportunities for both designing and anthropological research inquiry simultaneously?...

Strategies for moving towards equity in recruitment of rural and Aboriginal research participants.

Science.gov (United States)

Wong, Sabrina T; Wu, Leena; Boswell, Brooke; Housden, Laura; Lavoie, Josee

2013-01-01

Equitable recruitment strategies, designed to ensure improved opportunities to participate in the research, are needed to include First Nations (FN) communities. The purpose of this article is to report on a set of successful strategies trialed with rural and FN communities in Canada. The strategies discussed were designed as part of a larger mixed-method study examining the effectiveness of Group Medical Visits (GMVs) on the quality of primary healthcare (PHC) in both FN reserve and northern communities in British Columbia (BC). Community partners and the study's decision-maker partners helped to identify and recruit primary care practices and reserve communities who were offering GMVs. Eleven communities (6 rural and 5 FN reserve) within the Northern Health Authority, BC participated in the study. Participants completed a survey either in person or via telephone. Content analysis was conducted on team meeting and field notes, focusing on issues related to the data collection process. Financial analysis was conducted on monetary resources spent on recruitment efforts in the various communities. Data were recorded regarding the number of times potential participants were contacted and mode of interview. Descriptive statistics were used to examine whether there were differences by mode of data collection, gender, and FN status. Logistic regression was used to examine whether FN status remained statistically significant after controlling for sex, education, employment status, age and health status. Once people were contacted, participation rate was 68% with 269 (n=90 men, n=179 women) people. Of those who participated in the survey, 42% were from FN communities. Content analysis revealed two overarching categories: (1) communication and coordination of the geographically dispersed research team and participating communities was maintained using synchronous and asynchronous methods; and (2) flexibility was needed to tailor recruitment strategies. Financial resources

On the utility of within-participant research design when working with patients with neurocognitive disorders.

Science.gov (United States)

Steingrimsdottir, Hanna Steinunn; Arntzen, Erik

2015-01-01

Within-participant research designs are frequently used within the field of behavior analysis to document changes in behavior before, during, and after treatment. The purpose of the present article is to show the utility of within-participant research designs when working with older adults with neurocognitive disorders. The reason for advocating for these types of experimental designs is that they provide valid information about whether the changes that are observed in the dependent variable are caused by manipulations of the independent variable, or whether the change may be due to other variables. We provide examples from published papers where within-participant research design has been used with patients with neurocognitive disorders. The examples vary somewhat, demonstrating possible applications. It is our suggestion that the within-participant research design may be used more often with the targeted client group than is documented in the literature at the current date.

“Research participants want to feel they are better off than they were before research was introduced to them”: engaging cameroonian rural plantation populations in HIV research

Directory of Open Access Journals (Sweden)

Kiawi Emmanuel

2012-06-01

Full Text Available Abstract Background During a period of evolving international consensus on how to engage communities in research, facilitators and barriers to participation in HIV prevention research were explored in a rural plantation community in the coastal region of Cameroon. Methods A formative rapid assessment using structured observations, focus group discussions (FGD, and key informant interviews (KIIs was conducted with a purposive non-probabilistic sample of plantation workers and their household members. Eligibility criteria included living or working >1 year within the plantation community and age >18 years. Both rapid and in-depth techniques were used to complete thematic analysis. Results Sixty-five persons participated in the study (6 FGDs and 12 KIIs. Participants viewed malaria and gastrointestinal conditions as more common health concerns than HIV. They identified three factors as contributing to HIV risk: concurrent sexual relationships, sex work, and infrequent condom use. Interviewees perceived that the community would participate in HIV research if it is designed to: (1 improve community welfare, (2 provide comprehensive health services and treatment for illnesses, (3 protect the personal information of participants, especially those who test positive for HIV, (4 provide participant incentives, (5 incorporate community input, and (6 minimize disruptions to “everyday life”. Barriers to participation included: (1 fear of HIV testing, (2 mistrust of researchers given possible disrespect or intolerance of plantation community life and lack of concern for communication, (3 time commitment demands, (3 medical care and treatment that would be difficult or costly to access, and (4 life disruptions along with potential requirements for changes in behaviour (i.e., engage in or abstain from alcohol use and sex activities. Conclusions Consistent with UNAIDS guidelines for good participatory practice in HIV prevention research, study

Doing more good than harm? The effects of participation in sex research on young people in the Netherlands.

Science.gov (United States)

Kuyper, Lisette; de Wit, John; Adam, Philippe; Woertman, Liesbeth

2012-04-01

Ethical guidelines for research with human participants stress the importance of minimizing risks and maximizing benefits. In order to assist Institutional Review Boards (IRBs) and researchers to make more informed risk/benefit analyses with regard to sex research among adolescents, the current study examined the effects of participation in sex research among 899 young people (15-25 years old). Participants completed three questionnaires on a wide range of sexuality-related measures. They also completed scales measuring their levels of distress, need for help, and positive feelings due to their research participation. In general, negative effects of research participation seemed limited, while benefits of participation appeared substantial. Several differences with regard to sociodemographic characteristics were found (e.g., females experienced more distress then males and younger or lower educated participants experienced more positive feelings). In addition, victims of sexual coercion reported more distress and need for help due to their participation, but also experienced more positive feelings. No significant differences were found in relation to experience with sexual risk behaviors (e.g., experience with one-night-stands). Several limitations of the study were discussed, as were implications for future research. Overall, the findings caution IRBs and researchers against being overly protective regarding the inclusion of young people in sex research.

Ethics review of health research on human participants in South Africa.

Science.gov (United States)

van Wyk, Christa

2010-06-01

In terms of South African legislation, all health research on human participants must be submitted to an accredited research ethics committee for independent ethics review. Health research covers a broad spectrum of research, including clinical trials. This article sets out the ethical-legal framework for the functioning and composition of such committees. It also deals with the newly created National Health Research Ethics Council, which registers and audits health research ethics committees. Special attention is given to the conduct of clinical trials. In conclusion, it is submitted that the National Health Act, the Draft Regulations Relating to Research on Human Subjects, and two sets of ethical guidelines adopted by the Department of Health provide a much needed and coherent ethical-legal framework for research in South Africa.

Factors Affecting Women's Autonomous Decision Making In Research Participation Amongst Yoruba Women Of Western Nigeria.

Science.gov (United States)

Princewill, Chitu Womehoma; Jegede, Ayodele S; Nordström, Karin; Lanre-Abass, Bolatito; Elger, Bernice Simone

2017-04-01

Research is a global enterprise requiring participation of both genders for generalizable knowledge; advancement of science and evidence based medical treatment. Participation of women in research is necessary to reduce the current bias that most empirical evidence is obtained from studies with men to inform health care and related policy interventions. Various factors are assumed to limit autonomy amongst the Yoruba women of western Nigeria. This paper seeks to explore the experience and understanding of autonomy by the Yoruba women in relation to research participation. Focus is on factors that affect women's autonomous decision making in research participation. An exploratory qualitative approach comprising four focus group discussions, 42 in-depth interviews and 14 key informant interviews was used. The study permits a significant amount of triangulation, as opinions of husbands and religious leaders are also explored. Interviews and discussions were audiotaped and transcribed verbatim. Content analysis was employed for data analysis. Findings show that concepts of autonomy varied amongst the Yoruba women. Patriarchy, religion and culture are conceived to have negative impact on the autonomy of women in respect to research participation. Among the important findings are: 1) male dominance is strongly emphasized by religious leaders who should teach equality, 2) while men feel that by making decisions for women, they are protecting them, the women on the other hand see this protection as a way of limiting their autonomy. We recommend further studies to develop culturally appropriate and workable recruitment methods to increase women's participation in research. © 2016 John Wiley & Sons Ltd.

Efficacy of Progressive Muscle Relaxation Training on Anxiety, Depression and Quality of Life in Cancer Patients Undergoing Chemotherapy at Tabriz Hematology and Oncology Research Center, Iran in 2010

Directory of Open Access Journals (Sweden)

Reza Shabanlui

2012-01-01

Full Text Available Background: Chemotherapy is an important treatment for cancer, yet some of its side effects are serious and painful. Many patients with cancer suffer from psychiatric disorders that most likely result from therapeutic drugs or mental strategies to cope with their illness. Progressive muscle relaxation is one of the cost effective, self-help methods that promotes mental health in healthy participants. Thisstudy aims to determine the effect of progressive muscle relaxation training on anxiety and depression in cancer patients undergoing chemotherapy.Methods: This was a randomized, clinical study that enrolled 60 patients who received inpatient chemotherapy in the Tabriz Hematology and Oncology Research Center in 2010. We divided patients into two groups, intervention and control. All participants signed written formal consents and completed the Hospital Anxiety & Depression Scale questionnaires. Intervention group participants were trained inprogressive muscle relaxation in groups of 3-6 to enable participants to perform this technique when they were alone in the hospital and after discharge, two to three times each day. After one and three months, questionnaires were completed again by both groups and the results compared. 17th version of SPSS software was used fordata analysis.Results: After data analysis, most participants were satisfied with learning and experiencing this technique. There was no significant difference between scales in the case and control groups after one month (P>0.05. However after three months, anxiety and depression considerably improved in patients who underwent progressive muscle relaxation training (P<0.05.Conclusion: Progressive muscle relaxation training can improve anxietyand depression in cancer patients.

Participant recruitment and motivation for participation in optical technology for cervical cancer screening research trials.

Science.gov (United States)

Shuhatovich, Olga M; Sharman, Mathilde P; Mirabal, Yvette N; Earle, Nan R; Follen, Michele; Basen-Engquist, Karen

2005-12-01

In order to improve recruitment for cervical cancer screening trials, it is necessary to analyze the effectiveness of recruitment strategies used in current trials. A trial to test optical spectroscopy for the diagnosis of cervical neoplasia recruited 1000 women from the community; the trial evaluated the emerging technology against Pap smears and colposcopically directed biopsies for cervical dysplasia. We have examined women's reasons for participating as well as the effectiveness and efficiency for each recruitment strategy. Reasons for participation were identified and compared between trials. The recruitment method that resulted in the most contacts was newspaper reportorial coverage and advertising, followed by family and friends, then television news coverage. The most cost-effective method for finding eligible women who attend the research appointment is word of mouth from a family member or friend. Recommendations are given for maximizing the efficiency of recruitment for cervical cancer screening trials.

Reciprocity-based reasons for benefiting research participants: most fail, the most plausible is problematic.

Science.gov (United States)

Sofaer, Neema

2014-11-01

A common reason for giving research participants post-trial access (PTA) to the trial intervention appeals to reciprocity, the principle, stated most generally, that if one person benefits a second, the second should reciprocate: benefit the first in return. Many authors consider it obvious that reciprocity supports PTA. Yet their reciprocity principles differ, with many authors apparently unaware of alternative versions. This article is the first to gather the range of reciprocity principles. It finds that: (1) most are false. (2) The most plausible principle, which is also problematic, applies only when participants experience significant net risks or burdens. (3) Seldom does reciprocity support PTA for participants or give researchers stronger reason to benefit participants than equally needy non-participants. (4) Reciprocity fails to explain the common view that it is bad when participants in a successful trial have benefited from the trial intervention but lack PTA to it. © 2013 John Wiley & Sons Ltd.

Note On Research Design For The Study Of Community Participation In Health Care Programmes

Directory of Open Access Journals (Sweden)

Rifkin Susan B

1986-01-01

Full Text Available After describing types of research designs for the study of community participation in health care programmes, this paper examines one methodology, the quantitative methodology, the quantitative methodology, in detail. It presents some of the major attractions and limitations of this approach. The attractions include the need for evaluation of success and failure and of cost effectiveness of programmes. The limitations include the inability of the approach to deal with definitions and interventions that cannot be quantitified and the difficulty of identifying casual relationship between interventions and outcomes. These characteristics are illustrated by a case by a medical school in Asia. Research design, research developments and research outcomes are described and analysed. The paper concludes that an alternative analysis which examines the linkages between participation and health improvements would be more useful as it would allow the political, social and economic dimensions of community participation to be examined.

Improving subject recruitment, retention, and participation in research through Peplau's theory of interpersonal relations.

Science.gov (United States)

Penckofer, Sue; Byrn, Mary; Mumby, Patricia; Ferrans, Carol Estwing

2011-04-01

Recruitment and retention of persons participating in research is one of the most significant challenges faced by investigators. Although incentives are often used to improve recruitment and retention, evidence suggests that the relationship of the patient to study personnel may be the single, most important factor in subject accrual and continued participation. Peplau's theory of interpersonal relations provides a framework to study the nurse-patient relationship during the research process. In this paper the authors provide a brief summary of research strategies that have been used for the recruitment and retention of subjects and an overview of Peplau's theory of interpersonal relations including its use in research studies. In addition, a discussion of how this theory was used for the successful recruitment and retention of women with type 2 diabetes who participated in a clinical trial using a nurse-delivered psychoeducational intervention for depression is addressed.

Early symptoms in the prodromal phase of delirium: a prospective cohort study in elderly patients undergoing hip surgery

NARCIS (Netherlands)

de Jonghe, Jos F. M.; Kalisvaart, Kees J.; Dijkstra, Marty; van Dis, Huib; Vreeswijk, Ralph; Kat, Martin G.; Eikelenboom, Piet; van der Ploeg, Tjeerd; van Goo, Willem A.

2007-01-01

OBJECTIVES: The authors investigated prodromal delirium symptoms in elderly patients undergoing hip surgery. METHODS: This was a prospective cohort study in the setting of a large medical school-affiliated general hospital in Alkmaar, The Netherlands. Participants were patients undergoing hip

Infusing Participants' Voices into Grounded Theory Research: A Poetic Anthology

Science.gov (United States)

Kennedy, Brianna L.

2009-01-01

This article augments the author's grounded theory study of student and teacher interactions in alternative education classrooms by presenting poetic transcription as a way to portray the essences and experiences of the participants. The author builds on the experimental writing traditions of other researchers to embrace her own experiences as a…

Perspectives on Research Participation and Facilitation Among Dialysis Patients, Clinic Personnel, and Medical Providers: A Focus Group Study.

Science.gov (United States)

Flythe, Jennifer E; Narendra, Julia H; Dorough, Adeline; Oberlander, Jonathan; Ordish, Antoinette; Wilkie, Caroline; Dember, Laura M

2017-12-19

Most prospective studies involving individuals receiving maintenance dialysis have been small, and many have had poor clinical translatability. Research relevance can be enhanced through stakeholder engagement. However, little is known about dialysis clinic stakeholders' perceptions of research participation and facilitation. The objective of this study was to characterize the perspectives of dialysis clinic stakeholders (patients, clinic personnel, and medical providers) on: (1) research participation by patients and (2) research facilitation by clinic personnel and medical providers. We also sought to elucidate stakeholder preferences for research communication. Qualitative study. 7 focus groups (59 participants: 8 clinic managers, 14 nurses/patient care technicians, 8 social workers/dietitians, 11 nephrologists/advanced practice providers, and 18 patients/care partners) from 7 North Carolina dialysis clinics. Clinics and participants were purposively sampled. Focus groups were recorded and transcribed. Thematic analysis. We identified 11 themes that captured barriers to and facilitators of research participation by patients and research facilitation by clinic personnel and medical providers. We collapsed these themes into 4 categories to create an organizational framework for considering stakeholder (narrow research understanding, competing personal priorities, and low patient literacy and education levels), relationship (trust, buy-in, and altruistic motivations), research design (convenience, follow-up, and patient incentives), and dialysis clinic (professional demands, teamwork, and communication) aspects that may affect stakeholder interest in participating in or facilitating research. These themes appear to shape the degree of research readiness of a dialysis clinic environment. Participants preferred short research communications delivered in multiple formats. Potential selection bias and inclusion of English-speaking participants only. Our findings

Research Participants' Understanding of and Reactions to Certificates of Confidentiality.

Science.gov (United States)

Beskow, Laura M; Check, Devon K; Ammarell, Natalie

2014-01-01

Certificates of Confidentiality are intended to facilitate participation in critical public health research by protecting against forced disclosure of identifying data in legal proceedings, but little is known about the effect of Certificate descriptions in consent forms. To gain preliminary insights, we conducted qualitative interviews with 50 HIV-positive individuals in Durham, North Carolina to explore their subjective understanding of Certificate descriptions and whether their reactions differed based on receiving a standard versus simplified description. Most interviewees were neither reassured nor alarmed by Certificate information, and most said it would not influence their willingness to participate or provide truthful information. However, compared with those receiving the simplified description, more who read the standard description said it raised new concerns, that their likelihood of participating would be lower, and that they might be less forthcoming. Most interviewees said they found the Certificate description clear, but standard-group participants often found particular words and phrases confusing, while simplified-group participants more often questioned the information's substance. Valid informed consent requires comprehension and voluntariness. Our findings highlight the importance of developing consent descriptions of Certificates and other confidentiality protections that are simple and accurate. These qualitative results provide rich detail to inform a larger, quantitative study that would permit further rigorous comparisons.

Cost-effectiveness of health research study participant recruitment strategies: a systematic review.

Science.gov (United States)

Huynh, Lynn; Johns, Benjamin; Liu, Su-Hsun; Vedula, S Swaroop; Li, Tianjing; Puhan, Milo A

2014-10-01

A large fraction of the cost of conducting clinical trials is allocated to recruitment of participants. A synthesis of findings from studies that evaluate the cost and effectiveness of different recruitment strategies will inform investigators in designing cost-efficient clinical trials. To systematically identify, assess, and synthesize evidence from published comparisons of the cost and yield of strategies for recruitment of participants to health research studies. We included randomized studies in which two or more strategies for recruitment of participants had been compared. We focused our economic evaluation on studies that randomized participants to different recruitment strategies. We identified 10 randomized studies that compared recruitment strategies, including monetary incentives (cash or prize), direct contact (letters or telephone call), and medical referral strategies. Only two of the 10 studies compared strategies for recruiting participants to clinical trials. We found that allocating additional resources to recruit participants using monetary incentives or direct contact yielded between 4% and 23% additional participants compared to using neither strategy. For medical referral, recruitment of prostate cancer patients by nurses was cost-saving compared to recruitment by consultant urologists. For all underlying study designs, monetary incentives cost more than direct contact with potential participants, with a median incremental cost per recruitment ratio of Int$72 (Int$-International dollar, a theoretical unit of currency) for monetary incentive strategy compared to Int$28 for direct contact strategy. Only monetary incentives and source of referral were evaluated for recruiting participants into clinical trials. We did not review studies that presented non-monetary cost or lost opportunity cost. We did not adjust for the number of study recruitment sites or the study duration in our economic evaluation analysis. Systematic and explicit reporting of

Ethical perspectives of children's assent for research participation: deontology and on utilitarianism.

Science.gov (United States)

Pieper, Pam

2008-01-01

Is a child's assent to participate in research that does not have the potential to directly benefit the child ethically mandated? Analysis of this particular dilemma of health care research in children using two competing theories results in different answers. Deontology (principle-based ethics) will be contrasted with utilitarianism (consequentialism). Historical cases of research with children will be used as exemplars of these two theoretical positions.

The potential therapeutic value for bereaved relatives participating in research: An exploratory study.

Science.gov (United States)

Germain, Alison; Mayland, Catriona R; Jack, Barbara A

2016-10-01

Conducting research with the bereaved presents an immediate ethical challenge, as they are undoubtedly a vulnerable group, associated with high levels of distress and susceptible to both physical and mental health issues. A comprehensive understanding of the potential therapeutic benefits for bereaved relatives participating in palliative care research is limited, and therefore the ethics of engaging this group remain questionable. This paper describes a secondary analysis of qualitative data collected in the Care of the Dying Evaluation (CODE) project, examining the experiences of patients who died at home. It explores the motivations and potential benefits for bereaved relatives participating in research with reference to the recently developed concepts in bereavement theory. Cognitive interviews were conducted with 15 bereaved relatives and secondary analysis using a content analysis framework was employed to classify the data. The results center around six recurring concepts identified as adaptive in current bereavement theory: an opportunity to share the narrative accounts of the final hours of their relative's life; a search for sense and meaning in loss; an ongoing bond/attachment with the deceased; altruistic motivations; oscillation between loss and restorative orientations; and a sense of resilience. Overall, the participants found that taking part in the research was valuable and that it could be described as offering therapeutic benefits. The need for bereaved relatives to take part in research studies should be encouraged, as they provide an accurate proxy for the patient's experience of end-of-life care while also providing a valuable account of their own perspective as family member and carer. In addition, we highlight the need for ethics committees to be aware of the potential benefits for bereaved relatives participating in research of this kind.

Research priorities in health communication and participation: international survey of consumers and other stakeholders

Science.gov (United States)

Bragge, Peter; Lowe, Dianne; Nunn, Jack S; O’Sullivan, Molly; Horvat, Lidia; Tong, Allison; Kay, Debra; Ghersi, Davina; McDonald, Steve; Poole, Naomi; Bourke, Noni; Lannin, Natasha; Vadasz, Danny; Oliver, Sandy; Carey, Karen; Hill, Sophie J

2018-01-01

Objective To identify research priorities of consumers and other stakeholders to inform Cochrane Reviews in ‘health communication and participation’ (including such concepts as patient experience, shared decision-making and health literacy). Setting International. Participants We included anyone with an interest in health communication and participation. Up to 151 participants (18–80 years; 117 female) across 12 countries took part, including 48 consumers (patients, carers, consumer representatives) and 75 professionals (health professionals, policymakers, researchers) (plus 25 people who identified as both). Design Survey. Methods We invited people to submit their research ideas via an online survey open for 4 weeks. Using inductive thematic analysis, we generated priority research topics, then classified these into broader themes. Results Participants submitted 200 research ideas, which we grouped into 21 priority topics. Key research priorities included: insufficient consumer involvement in research (19 responses), ‘official’ health information is contradictory and hard to understand (18 responses), communication/coordination breakdowns in health services (15 responses), health information provision a low priority for health professionals (15 responses), insufficient eliciting of patient preferences (14 responses), health services poorly understand/implement patient-centred care (14 responses), lack of holistic care impacting healthcare quality and safety (13 responses) and inadequate consumer involvement in service design (11 responses). These priorities encompassed acute and community health settings, with implications for policy and research. Priority populations of interest included people from diverse cultural and linguistic backgrounds, carers, and people with low educational attainment, or mental illness. Most frequently suggested interventions focused on training and cultural change activities for health services and health professionals

Occupational therapy practice community: process evaluation by the participants and researchers

Directory of Open Access Journals (Sweden)

Sandra Maria Galheigo

2015-09-01

Full Text Available This article presents the results of a participatory action research with occupational therapists in a community of practice which purpose was to discuss the care production provided by occupational therapy to hospitalized children and adolescents. The participants were nine occupational therapists from hospitals of the city of São Paulo. Ten face-to-face meetings were conducted and a Web-mediated environment was created for conducting virtual activities. The face meetings were recorded and tapped. This article aims to present the evaluation made by the participants and researchers about the process experienced in the community. Through content analysis, seventeen reporting units were identified and grouped into four main themes: the dialogic process; theoretical and practical implications; reflective process; participatory process and its barriers. The process evaluation showed that dialogue during the meetings contributed to a sense of belonging, integration, and awareness/group cohesion and made possible discussing and reflecting on topics relevant to the practice of occupational therapist. Direct communication proved to be the main form of exchange among the professionals in the group. The participants working conditions, the computers and virtual environments access issues, the surplus work generated by meetings and the displacement in urban centers were complicating factors for the participant’s greater adhesion. Evaluation showed that this strategy favored the construction of shared knowledge, and its implementation can foster reflection, research development and knowledge production, as well as contribute to the occupational therapist professional practice improvement.

Public Engagement Through Shared Immersion: Participating in the Processes of Research.

Science.gov (United States)

Tang, Jessica Janice; Maroothynaden, Jason; Bello, Fernando; Kneebone, Roger

2013-10-01

Recently, the literature has emphasized the aims and logistics of public engagement, rather than its epistemic and cultural processes. In this conceptual article, we use our work on surgical simulation to describe a process that has moved from the classroom and the research laboratory into the public sphere. We propose an innovative shared immersion model for framing the relationship between engagement activities and research. Our model thus frames the public engagement experience as a participative encounter, which brings visitor and researcher together in a shared (surgical) experience mediated by experts from a range of domains.

Bridging the Gap: Racial concordance as a strategy to increase African American participation in breast cancer research.

Science.gov (United States)

Frierson, Georita M; Pinto, Bernardine M; Denman, Deanna C; Leon, Pierre A; Jaffe, Alex D

2017-11-01

Lack of African American females in breast cancer research has been receiving substantial attention. This study seeks to identify research perceptions and motivating factors needed to increase racial/ethnic minority participation in breast cancer research. A total of 57 African American women (Σ = 47.8 years), from Rhode Island and Texas, completed a questionnaire and focus group. While many participants were not breast cancer survivors, they reported knowledge of their racial group's risk for breast cancer. One major finding that could be seen as both a facilitator and barrier is racial concordance between participant and researcher. Cultural sensitivity and trust building is recommended to increase minority participation.

A quantitative study of attitudes toward the research participation of adults with intellectual disability: Do stakeholders agree?

Science.gov (United States)

McDonald, Katherine E; Conroy, Nicole E; Olick, Robert S

2017-12-13

Attitudes toward the research participation of adults with intellectual disability inform research policy and practice, impact interest in and support for research participation, and promote or discourage the generation of new knowledge to promote health among adults with intellectual disability. Yet we know little about these beliefs among the public and the scientific community. We quantitatively studied attitudes among adults with intellectual disability, family and friends, disability service providers, researchers, and Institutional Review Board (IRB) members. We predicted that adults with intellectual disability, and researchers would espouse views most consistent with disability rights, whereas IRB members, and to a lesser degree family, friends, and service providers, would espouse more protective views. We surveyed five hundred and twelve members of the five participant stakeholder groups on their attitudes toward the research participation of adults with intellectual disability. We found broad support for research about people with intellectual disability, though slightly more tempered support for their direct participation therein. In general, IRB members and to some extent adults with intellectual disability endorsed direct participation less than others. We also found that adults with intellectual disability strongly believed in their consent capacity. Resources should be directed toward health-related research with adults with intellectual disability, and interventions should be pursued to address ethical challenges and promote beliefs consistent with human rights. Copyright © 2017 Elsevier Inc. All rights reserved.

Participation in college laboratory research apprenticeships among students considering careers in medicine

Directory of Open Access Journals (Sweden)

Dorothy A. Andriole

2015-06-01

Full Text Available Objective: We sought to determine the prevalence of college laboratory research apprenticeship (CLRA participation among students considering medical careers and to examine the relationship between CLRA participation and medical-school acceptance among students who applied to medical school. Methods: We used multivariate logistic regression to identify predictors of: 1 CLRA participation in a national cohort of 2001–2006 Pre-Medical College Admission Test (MCAT Questionnaire (PMQ respondents and 2 among those PMQ respondents who subsequently applied to medical school, medical-school acceptance by June 2013, reporting adjusted odds ratios (aOR and 95% confidence intervals (95% CI. Results: Of 213,497 PMQ respondents in the study sample (81.2% of all 262,813 PMQ respondents in 2001–2006, 72,797 (34.1% reported CLRA participation. Each of under-represented minorities in medicine (URM race/ethnicity (vs. white, aOR: 1.04; 95% CI: 1.01–1.06, Asian/Pacific Islander race/ethnicity (vs. white, aOR: 1.20; 95% CI: 1.17–1.22, and high school summer laboratory research apprenticeship (HSLRA participation (aOR: 3.95; 95% CI: 3.84–4.07 predicted a greater likelihood of CLRA participation. Of the 213,497 PMQ respondents in the study sample, 144,473 (67.7% had applied to medical school and 87,368 (60.5% of 144,473 medical-school applicants had been accepted to medical school. Each of female gender (vs. male, aOR: 1.19; 95% CI: 1.16–1.22, URM race/ethnicity (vs. white, aOR: 3.91; 95% CI: 3.75–4.08, HSLRA participation (aOR: 1.11; 95% CI: 1.03–1.19, CLRA participation (aOR: 1.12; 95% CI: 1.09–1.15, college summer academic enrichment program participation (aOR: 1.26; 95% CI: 1.21–1.31, and higher MCAT score (per point increase, aOR: 1.31; 95% CI: 1.30–1.31 predicted a greater likelihood of medical-school acceptance. Conclusions: About one-third of all PMQ respondents had participated in CLRAs prior to taking the MCAT, and such participation

Understandings of Participation in Behavioural Research: A Qualitative Study of Gay and Bisexual Men in Scotland.

Directory of Open Access Journals (Sweden)

Nicola Boydell

Full Text Available An array of empirical research has emerged related to public participation in health research. To date, few studies have explored the particular perspectives of gay and bisexual men taking part in behavioural surveillance research, which includes the donation of saliva swabs to investigate HIV prevalence and rates of undiagnosed HIV. Semi-structured interviews were conducted with twenty-nine gay and bisexual men in Scotland who had participated in a bar-based survey. Thematic analysis of men's accounts of their motives for participation and their perceptions of not receiving individual feedback on HIV status suggested a shared understanding of participation in research as a means of contributing to 'community' efforts to prevent the spread of HIV. Most men expressed sophisticated understandings of the purpose of behavioural research and distinguished between this and individual diagnostic testing. Despite calls for feedback on HIV results broadly, for these men feedback on HIV status was not deemed crucial.

Understandings of Participation in Behavioural Research: A Qualitative Study of Gay and Bisexual Men in Scotland.

Science.gov (United States)

Boydell, Nicola; Fergie, Gillian May; McDaid, Lisa Margaret; Hilton, Shona

2015-01-01

An array of empirical research has emerged related to public participation in health research. To date, few studies have explored the particular perspectives of gay and bisexual men taking part in behavioural surveillance research, which includes the donation of saliva swabs to investigate HIV prevalence and rates of undiagnosed HIV. Semi-structured interviews were conducted with twenty-nine gay and bisexual men in Scotland who had participated in a bar-based survey. Thematic analysis of men's accounts of their motives for participation and their perceptions of not receiving individual feedback on HIV status suggested a shared understanding of participation in research as a means of contributing to 'community' efforts to prevent the spread of HIV. Most men expressed sophisticated understandings of the purpose of behavioural research and distinguished between this and individual diagnostic testing. Despite calls for feedback on HIV results broadly, for these men feedback on HIV status was not deemed crucial.

Medical Research Participation as "Ethical Intercorporeality": Caring for Bio-Social Bodies in a Mexican Human Papillomavirus (HPV) Study.

Science.gov (United States)

Wentzell, Emily

2017-03-01

While medical research ethics guidelines frame participants as individual and autonomous, anthropologists emphasize the relational nature of health research participation. I analyze interviews with Mexican male HPV study participants and their wives to examine how research participants themselves focus on relationships when imagining research-related benefits. I argue that couples incorporated the local trope of the Mexican citizenry as a biologically homogeneous national body, which individual members help or harm through their gendered health behavior to understand these benefits. I use the concept of "ethical intercorporeality" to discuss spouses' understandings of themselves as parts of bio-social wholes-the couple, family, and society-that they believed men's research participation could aid both physically and socially. This finding extends the insight that focusing on relationships rather than individuals is necessary for understanding the consequences of medical research by showing how participants themselves might apply this perspective in context-specific ways. © 2016 by the American Anthropological Association.

Formal education of patients about to undergo laparoscopic cholecystectomy.

Science.gov (United States)

Gurusamy, Kurinchi Selvan; Vaughan, Jessica; Davidson, Brian R

2014-02-28

Generally, before being operated on, patients will be given informal information by the healthcare providers involved in the care of the patients (doctors, nurses, ward clerks, or healthcare assistants). This information can also be provided formally in different formats including written information, formal lectures, or audio-visual recorded information. To compare the benefits and harms of formal preoperative patient education for patients undergoing laparoscopic cholecystectomy. We searched the Cochrane Central Register of Controlled Trials (CENTRAL) (Issue 2, 2013), MEDLINE, EMBASE, and Science Citation Index Expanded to March 2013. We included only randomised clinical trials irrespective of language and publication status. Two review authors independently extracted the data. We planned to calculate the risk ratio with 95% confidence intervals (CI) for dichotomous outcomes, and mean difference (MD) or standardised mean difference (SMD) with 95% CI for continuous outcomes based on intention-to-treat analyses when data were available. A total of 431 participants undergoing elective laparoscopic cholecystectomy were randomised to formal patient education (215 participants) versus standard care (216 participants) in four trials. The patient education included verbal education, multimedia DVD programme, computer-based multimedia programme, and Power Point presentation in the four trials. All the trials were of high risk of bias. One trial including 212 patients reported mortality. There was no mortality in either group in this trial. None of the trials reported surgery-related morbidity, quality of life, proportion of patients discharged as day-procedure laparoscopic cholecystectomy, the length of hospital stay, return to work, or the number of unplanned visits to the doctor. There were insufficient details to calculate the mean difference and 95% CI for the difference in pain scores at 9 to 24 hours (1 trial; 93 patients); and we did not identify clear evidence of

Pediatric oncologists' attitudes towards involving adolescents in decision-making concerning research participation.

Science.gov (United States)

de Vries, Martine C; Wit, Jan M; Engberts, Dirk P; Kaspers, Gertjan J L; van Leeuwen, Evert

2010-07-15

Various regulations and guidelines stipulate the importance of involving adolescents in decision-making concerning research participation. Several studies have shown that in the context of pediatric oncology this involvement is difficult to achieve due to emotional stress, the complexity of research protocols and limited time. Still, up to 80% of adolescents with cancer enter onto a trial during their illness. The aim of this study was to determine clinicians' views and attitudes towards enrolling adolescents in research, considering the difficulties surrounding their involvement in decision-making. A qualitative multicenter study was performed, using in-depth semi-structured interviews on the informed consent process with 15 pediatric hemato-oncologists. Four central themes emerged that characterize clinicians' attitudes towards involving adolescents in the decision-making process: (1) clinicians regard most adolescents as not capable of participating meaningfully in discussions regarding research; (2) clinicians do not always provide adolescents with all information; (3) proxy consent from parents is obtained and is deemed sufficient; (4) clinician-investigator integrity: clinicians judge research protocols as not being harmful and even in the best interest of the adolescent. Clinicians justify not involving adolescents in research discussions by referring to best interest arguments (adolescents' incompetence, proxy consent, and investigator integrity), although this is not in line with legal regulations and ethical guidelines.

Nitrates for the prevention of cardiac morbidity and mortality in patients undergoing non-cardiac surgery.

Science.gov (United States)

Zhao, Na; Xu, Jin; Singh, Balwinder; Yu, Xuerong; Wu, Taixiang; Huang, Yuguang

2016-08-04

Cardiac complications are not uncommon in patients undergoing non-cardiac surgery, especially in patients with coronary artery disease (CAD) or at high risk of CAD. Perioperative cardiac complications can lead to mortality and morbidity, as well as higher costs for patient care. Nitrates, which are among the most commonly used cardiovascular drugs, perform the function of decreasing cardiac preload while improving cardiac blood perfusion. Sometimes, nitrates are administered to patients undergoing non-cardiac surgery to reduce the incidence of cardiac complications, especially for patients with CAD. However, their effects on patients' relevant outcomes remain controversial. • To assess effects of nitrates as compared with other interventions or placebo in reducing cardiac risk (such as death caused by cardiac factors, angina pectoris, acute myocardial infarction, acute heart failure and cardiac arrhythmia) in patients undergoing non-cardiac surgery.• To identify the influence of different routes and dosages of nitrates on patient outcomes. We searched the Cochrane Central Register of Controlled Trials (CENTRAL), MEDLINE, EMBASE and the Chinese BioMedical Database until June 2014. We also searched relevant conference abstracts of important anaesthesiology or cardiology scientific meetings, the database of ongoing trials and Google Scholar.We reran the search in January 2016. We added three potential new studies of interest to the list of 'Studies awaiting classification' and will incorporate them into our formal review findings for the review update. We included randomized controlled trials (RCTs) comparing nitrates versus no treatment, placebo or other pharmacological interventions in participants (15 years of age and older) undergoing non-cardiac surgery under any type of anaesthesia. We used standard methodological procedures as expected by Cochrane. Two review authors selected trials, extracted data from included studies and assessed risk of bias. We

Susceptibility of elderly Asian immigrants to persuasion with respect to participation in research.

Science.gov (United States)

Brugge, Doug; Kole, Alison; Lu, Weibo; Must, Aviva

2005-04-01

Familism, respect for authority, and a sense of shame/pride are cultural characteristics that might influence research participation of Asian Americans. We compared 79 elderly Asian immigrants, most of whom immigrated from China or Hong Kong, with 58 elders who were not Asian and mostly not immigrants. Responding to hypothetical situations presented on a self-administered questionnaire, the Asian group professed to be more likely to be influenced by a request from a son/daughter, landlord, physician, or advertisement (p<0.001) and by a monetary incentive (p=0.05). Multivariate adjustment for potential confounders attenuated the strength of these relations, but except in the case of the monetary offer, differences remained statistically significant. Within the Asian group, multivariate logistic regression modeling indicated that years lived in the US was associated with more likelihood of refusing requests to participate in research. We conclude that acculturation or assimilation into American society may build resistance to pressure to participate in research. Our findings also suggest that elderly Asian immigrants may need additional protections to achieve truly informed consent.

Perception of control, coping and psychological stress of infertile women undergoing IVF

DEFF Research Database (Denmark)

Gourounti, Kleanthi; Anagnostopoulos, Fotios; Potamianos, Grigoris

2012-01-01

to control for the effects of demographic variables. This cross-sectional study included 137 women with fertility problems undergoing IVF in a public hospital. All participants completed questionnaires that measured fertility-related stress, state anxiety, depressive symptomatology, perception of control...

Disclosure of individual genetic data to research participants: the debate reconsidered

NARCIS (Netherlands)

Bredenoord, A.L.; Kroes, H.Y.; Cuppen, E.; Parker, M.; van Delden, J.J.M.

2010-01-01

Despite extensive debate, there is no consensus on whether individual genetic data should be disclosed to research participants. The emergence of whole-genome sequencing methods is increasingly generating unequalled amounts of genetic data, making the need for a clear feedback policy even more

Barriers and Motivators to Participating in mHealth Research Among African American Men.

Science.gov (United States)

James, Delores C S; Harville, Cedric

2017-11-01

Most African American (AA) men own a smartphone, which positions them to be targeted for a variety of programs, services, and health interventions using mobile devices (mHealth). The goal of this study was to assess AA men's use of technology and the barriers and motivators to participating in mHealth research. A self-administered survey was completed by 311 men. Multinomial logistic regression examined associations between three age groups (18-29 years, 30-50 years, and 51+ years), technology access, and motivators and barriers to participating in mHealth research. Sixty-five percent of men owned a smartphone and a laptop. Men aged 18 to 29 years were more likely willing to use a health app and smartwatch/wristband monitor than older men ( p motivated to participate for a free cell phone/upgraded data plan and contribution to the greater good ( p motivated to become more educated about the topic ( p < .05). Younger men were more likely than older ones to report lack of interest in the topic as a barrier to participating ( p < .01), while older men were more likely than younger ones to cite lack of research targeted to minority communities as a barrier ( p < .05). This study suggests that culturally tailored mHealth research using smartphones may be of interest to AA men interested in risk reduction and chronic disease self-management. Opportunities also exist to educate AA men about the topic at hand and why minority men are being targeted for the programs and interventions.

Recruiting Adolescent Research Participants: In-Person Compared to Social Media Approaches.

Science.gov (United States)

Moreno, Megan A; Waite, Alan; Pumper, Megan; Colburn, Trina; Holm, Matt; Mendoza, Jason

2017-01-01

Recruiting adolescent participants for research is challenging. The purpose of this study was to compare traditional in-person recruitment methods to social media recruitment. We recruited adolescents aged 14-18 years for a pilot physical activity intervention study, including a wearable physical activity tracking device and a Facebook group. Participants were recruited (a) in person from a local high school and an adolescent medicine clinic and (b) through social media, including Facebook targeted ads, sponsored tweets on Twitter, and a blog post. Data collected included total exposure (i.e., reach), engagement (i.e., interaction), and effectiveness. Effectiveness included screening and enrollment for each recruitment method, as well as time and resources spent on each recruitment method. In-person recruitment reached a total of 297 potential participants of which 37 enrolled in the study. Social media recruitment reached a total of 34,272 potential participants of which 8 enrolled in the study. Social media recruitment methods utilized an average of 1.6 hours of staff time and cost an average of $40.99 per participant enrolled, while in-person recruitment methods utilized an average of 0.75 hours of staff time and cost an average of $19.09 per participant enrolled. Social media recruitment reached more potential participants, but the cost per participant enrolled was higher compared to traditional methods. Studies need to consider benefits and downsides of traditional and social media recruitment methods based on study goals and population.

Sports participation and alcohol use among adolescents: the impact of measurement and other research design elements.

Science.gov (United States)

Mays, Darren; Gatti, Margaret E; Thompson, Nancy J

2011-06-01

Sports participation, while offering numerous developmental benefits for adolescents, has been associated with alcohol use in prior research. However, the relationship between sports participation and alcohol use among adolescents remains unclear, particularly how research design elements impact evidence of this relationship. We reviewed the evidence regarding sports participation and alcohol use among adolescents, with a focus on examining the potential impact of research design elements on this evidence. Studies were assessed for eligibility and coded based on research design elements including: study design, sampling method, sample size, and measures of sports participation and alcohol use. Fifty-four studies were assessed for eligibility, 29 of which were included in the review. Nearly two-thirds used a cross-sectional design and a random sampling method, with sample sizes ranging from 178 to 50,168 adolescents (Median = 1,769). Sixteen studies used a categorical measure of sports participation, while 7 applied an index-type measure and 6 employed some other measure of sports participation. Most studies assessed alcohol-related behaviors (n = 18) through categorical measures, while only 6 applied frequency only measures of alcohol use, 1 study applied quantity only measures, and 3 studies used quantity and frequency measures. Sports participation has been defined and measured in various ways, most of which do not differentiate between interscholastic and community-based contexts, confounding this relationship. Stronger measures of both sports participation and alcohol use need to be applied in future studies to advance our understanding of this relationship among youths.

Enhancing Hispanic participation in mental health clinical research: development of a Spanish-speaking depression research site.

Science.gov (United States)

Aponte-Rivera, Vivianne; Dunlop, Boadie W; Ramirez, Cynthia; Kelley, Mary E; Schneider, Rebecca; Blastos, Beatriz; Larson, Jacqueline; Mercado, Flavia; Mayberg, Helen; Craighead, W Edward

2014-03-01

Hispanics, particularly those with limited English proficiency, are underrepresented in psychiatric clinical research studies. We developed a bilingual and bicultural research clinic dedicated to the recruitment and treatment of Spanish-speaking subjects in the Predictors of Remission in Depression to Individual and Combined Treatments (PReDICT) study, a large clinical trial of treatment-naïve subjects with major depressive disorder (MDD). Demographic and clinical data derived from screening evaluations of the first 1,174 subjects presenting for participation were compared between the Spanish-speaking site (N = 275) and the primary English-speaking site (N = 899). Reasons for ineligibility (N = 888) for the PReDICT study were tallied for each site. Compared to English speakers, Spanish speakers had a lower level of education and were more likely to be female, uninsured, and have uncontrolled medical conditions. Clinically, Spanish speakers demonstrated greater depression severity, with higher mean symptom severity scores, and a greater number of previous suicide attempts. Among the subjects who were not randomized into the PReDICT study, Spanish-speaking subjects were more likely to have an uncontrolled medical condition or refuse participation, whereas English-speaking subjects were more likely to have bipolar disorder or a non-MDD depressive disorder. Recruitment of Hispanic subjects with MDD is feasible and may enhance efforts at signal detection, given the higher severity of depression among Spanish-speaking participants presenting for clinical trials. Specific approaches for the recruitment and retention of Spanish-speaking participants are required. © 2013 Wiley Periodicals, Inc.

Key stakeholder perceptions about consent to participate in acute illness research: a rapid, systematic review to inform epi/pandemic research preparedness.

Science.gov (United States)

Gobat, Nina H; Gal, Micaela; Francis, Nick A; Hood, Kerenza; Watkins, Angela; Turner, Jill; Moore, Ronald; Webb, Steve A R; Butler, Christopher C; Nichol, Alistair

2015-12-29

A rigorous research response is required to inform clinical and public health decision-making during an epi/pandemic. However, the ethical conduct of such research, which often involves critically ill patients, may be complicated by the diminished capacity to consent and an imperative to initiate trial therapies within short time frames. Alternative approaches to taking prospective informed consent may therefore be used. We aimed to rapidly review evidence on key stakeholder (patients, their proxy decision-makers, clinicians and regulators) views concerning the acceptability of various approaches for obtaining consent relevant to pandemic-related acute illness research. We conducted a rapid evidence review, using the Internet, database and hand-searching for English language empirical publications from 1996 to 2014 on stakeholder opinions of consent models (prospective informed, third-party, deferred, or waived) used in acute illness research. We excluded research on consent to treatment, screening, or other such procedures, non-emergency research and secondary studies. Papers were categorised, and data summarised using narrative synthesis. We screened 689 citations, reviewed 104 full-text articles and included 52. Just one paper related specifically to pandemic research. In other emergency research contexts potential research participants, clinicians and research staff found third-party, deferred, and waived consent to be acceptable as a means to feasibly conduct such research. Acceptability to potential participants was motivated by altruism, trust in the medical community, and perceived value in medical research and decreased as the perceived risks associated with participation increased. Discrepancies were observed in the acceptability of the concept and application or experience of alternative consent models. Patients accepted clinicians acting as proxy-decision makers, with preference for two decision makers as invasiveness of interventions increased

Facilitating the participation of people with aphasia in research : a description of strategies

NARCIS (Netherlands)

Dalemans, R.; Wade, D.T.; van den Heuvel, W.J.A.; de Witte, L.P.

2009-01-01

Background: People with aphasia are often excluded from research because of their communication impairments, especially when an investigation into the communication impairment is not the primary goal. In our research concerning social participation of people with aphasia, we wanted to include people

Sexual and Gender Minority Adolescents' Views On HIV Research Participation and Parental Permission: A Mixed-Methods Study.

Science.gov (United States)

Mustanski, Brian; Coventry, Ryan; Macapagal, Kathryn; Arbeit, Miriam R; Fisher, Celia B

2017-06-01

Sexual and gender minority adolescents are underrepresented in HIV research, partly because institutional review boards (IRBs) are reluctant to waive parental permission requirements for these studies. Understanding teenagers' perspectives on parental permission and the risks and benefits of participating in HIV research is critical to informing evidence-based IRB decisions. Data from 74 sexual and gender minority adolescents aged 14-17 who participated in an online focus group in 2015 were used to examine perspectives on the risks and benefits of participation in a hypothetical HIV surveillance study and the need for parental permission and adequate protections. Data were analyzed thematically; mixed methods analyses examined whether concerns about parental permission differed by whether teenagers were out to their parents. Most adolescents, especially those who were not out to their parents, would be unwilling to participate in an HIV study if parental permission were required. Perceived benefits of participation included overcoming barriers to HIV testing and contributing to the health of sexual and gender minority youth. Few risks of participation were identified. Adolescents suggested steps that researchers could take to facilitate informed decision making about research participation and ensure minors' safety in the absence of parental permission; these included incorporating multimedia presentations into the consent process and explaining researchers' motivations for conducting the study. Respondents believed that the benefits of HIV surveillance research outweighed the risks. Requiring parental permission may exclude many sexual and gender minority teenagers from taking part in HIV research, especially if they are not out. Copyright © 2017 by the Guttmacher Institute.

Influence of ethical safeguards on research participation: comparison of perspectives of people with schizophrenia and psychiatrists.

Science.gov (United States)

Roberts, Laura W; Hammond, Katherine A Green; Warner, Teddy D; Lewis, Rae

2004-12-01

Several safeguards have been developed to protect research volunteers, but little is known about how the people involved in this research-the stakeholders-view these efforts to assure participant rights and well-being. The authors' goal was to examine these perspectives. As part of a larger study, 60 people with schizophrenia and 69 psychiatrists rated the protectiveness and influence on patients' willingness to participate in research of five safeguards: informed consent, alternative decision makers, institutional review boards, data safety monitoring boards, and confidentiality measures. All safeguards were perceived by both the participants with schizophrenia and by the psychiatrists as protective: on a scale of 1-5 on which 1=not protective at all and 5=very much protects, the mean scores ranged from 3.54 to 4.07. Four of the five safeguards were perceived by both the people with schizophrenia and by the psychiatrists as positively influencing patients' participation decisions. On a scale of 1-5 on which 1=much less willing and 5=much more willing to participate, the mean scores for these four safeguards ranged from 3.86 to 4.30. The mean score for the safeguard of an alternative decision maker, however, was 3.09. The ratings of protectiveness made by both the people with schizophrenia and the psychiatrists were correlated with their ratings of patients' willingness to participate in studies. Ethical commitment to research volunteers is expressed in safeguards. These efforts appear to be viewed positively by key stakeholders and may influence research participation decision making.

A Case Study of Engaging Hard-to-Reach Participants in the Research Process: Community Advisors on Research Design and Strategies (CARDS)®.

Science.gov (United States)

Kaiser, Betty L; Thomas, Gay R; Bowers, Barbara J

2017-02-01

Lack of diversity among study participants in clinical research limits progress in eliminating health disparities. The engagement of lay stakeholders, such as patient or community advisory boards (CABs), has the potential to increase recruitment and retention of underrepresented groups by providing a structure for gathering feedback on research plans and materials from this target population. However, many CABs intentionally recruit prominent stakeholders who are connected to or comfortable with research and academia and thus may not accurately represent the perspectives of underrepresented groups who have been labeled hard-to-reach, including racial minorities and low-income or low-literacy populations. We developed a partnership between the University of Wisconsin-Madison School of Nursing and two community centers to deliberately engage hard-to-reach people in two lay advisory groups, the Community Advisors on Research Design and Strategies (CARDS)®. Community center staff recruited the CARDS from center programs, including parenting and childcare programs, women's support groups, food pantries, and senior meal programs. The CARDS model differs from other CABs in its participants, processes, and outcomes. Since 2010, the CARDS have met monthly with nurses and other researchers, helping them understand how research processes and the language, tone, appearance, and organization of research materials can discourage people from enrolling in clinical studies. We have successfully used the CARDS model to bring hard-to-reach populations into the research process and have sustained their participation. The model represents a promising strategy for increasing the diversity of participants in clinical research. © 2016 Wiley Periodicals, Inc. © 2016 Wiley Periodicals, Inc.

FACTORS AFFECTING WOMEN’S AUTONOMOUS DECISION MAKING IN RESEARCH PARTICIPATION AMONGST YORUBA WOMEN OF WESTERN NIGERIA

Science.gov (United States)

PRINCEWILL, CHITU WOMEHOMA; JEGEDE, AYODELE S.; NORDSTRöM, KARIN; LANRE-ABASS, BOLATITO; ELGER, BERNICE SIMONE

2016-01-01

Research is a global enterprise requiring participation of both genders for generalizable knowledge; advancement of science and evidence based medical treatment. Participation of women in research is necessary to reduce the current bias that most empirical evidence is obtained from studies with men to inform health care and related policy interventions. Various factors are assumed to limit autonomy amongst the Yoruba women of western Nigeria. This paper seeks to explore the experience and understanding of autonomy by the Yoruba women in relation to research participation. Focus is on factors that affect women’s autonomous decision making in research participation. An exploratory qualitative approach comprising four focus group discussions, 42 in-depth interviews and 14 key informant interviews was used. The study permits a significant amount of triangulation, as opinions of husbands and religious leaders are also explored. Interviews and discussions were audiotaped and transcribed verbatim. Content analysis was employed for data analysis. Findings show that concepts of autonomy varied amongst the Yoruba women. Patriarchy, religion and culture are conceived to have negative impact on the autonomy of women in respect to research participation. Among the important findings are: 1) male dominance is strongly emphasized by religious leaders who should teach equality, 2) while men feel that by making decisions for women, they are protecting them, the women on the other hand see this protection as a way of limiting their autonomy. We recommend further studies to develop culturally appropriate and workable recruitment methods to increase women’s participation in research. PMID:26871880

Legislative Issues in Disclosing Financial Conflicts of Interest to Participants in Biomedical Research: Effectiveness and Methodology.

Science.gov (United States)

Kim, Jae Sun

2017-12-01

This research focuses on the analysis regarding disclosure of financial conflicts of interest (FCOI) after Gelsinger v. University of Pennsylvania (Penn). The main legal issue was that the participants did not have enough opportunity to make an autonomous decision about participating in the research because he was not informed about the researchers' and the institution's substantial FCOI. The disclosure system was adopted by the Code of Federal Regulations. Under the regulation, researchers and institutions need to report FCOI over $5,000 to the institution, and the internal review boards have to report to the federal authority if needed. In case of human research, the disclosure to Food and Drug Administration is mandatory. FCOI disclosure system would help participants to make an autonomous decision, and increase trust to the research process and researchers. Moreover, the system would let researchers keep fiduciary duty while (possibly) lowering legal liability in case of a lawsuit. There were discussions about the disclosure methodology in the United States. However, there have not been a lot of discussions in Korea even after the "Humidifier Disinfectant" case. Therefore, new legislations need to be considered. First, the system requires disclosure funded by not only government but also private institutions. Second, like California Supreme Court, the subject would be reviewed under the reasonable person standard by participants, including patents, equity, and stock. Third, the disclosure needs to include simple or brief explanation to the FCOI to be better understood by the participants. Fourth, the disclosure should be in the informed consent process. © 2017 The Korean Academy of Medical Sciences.

Research priorities in health communication and participation: international survey of consumers and other stakeholders.

Science.gov (United States)

Synnot, Anneliese; Bragge, Peter; Lowe, Dianne; Nunn, Jack S; O'Sullivan, Molly; Horvat, Lidia; Tong, Allison; Kay, Debra; Ghersi, Davina; McDonald, Steve; Poole, Naomi; Bourke, Noni; Lannin, Natasha; Vadasz, Danny; Oliver, Sandy; Carey, Karen; Hill, Sophie J

2018-05-08

To identify research priorities of consumers and other stakeholders to inform Cochrane Reviews in 'health communication and participation' (including such concepts as patient experience, shared decision-making and health literacy). International. We included anyone with an interest in health communication and participation. Up to 151 participants (18-80 years; 117 female) across 12 countries took part, including 48 consumers (patients, carers, consumer representatives) and 75 professionals (health professionals, policymakers, researchers) (plus 25 people who identified as both). Survey. We invited people to submit their research ideas via an online survey open for 4 weeks. Using inductive thematic analysis, we generated priority research topics, then classified these into broader themes. Participants submitted 200 research ideas, which we grouped into 21 priority topics. Key research priorities included: insufficient consumer involvement in research (19 responses), 'official' health information is contradictory and hard to understand (18 responses), communication/coordination breakdowns in health services (15 responses), health information provision a low priority for health professionals (15 responses), insufficient eliciting of patient preferences (14 responses), health services poorly understand/implement patient-centred care (14 responses), lack of holistic care impacting healthcare quality and safety (13 responses) and inadequate consumer involvement in service design (11 responses). These priorities encompassed acute and community health settings, with implications for policy and research. Priority populations of interest included people from diverse cultural and linguistic backgrounds, carers, and people with low educational attainment, or mental illness. Most frequently suggested interventions focused on training and cultural change activities for health services and health professionals. Consumers and other stakeholders want research addressing

The California-Arizona Minority Partnership for Astronomy Research and Education (CAMPARE): A New Model for Promoting Minority Participation in Astronomy Research and Education

Science.gov (United States)

Rudolph, Alexander L.; Impey, C. D.; Bieging, J. H.; Phillips, C. B.; Tieu, J.; Prather, E. E.; Povich, M. S.

2013-01-01

The California-Arizona Minority Partnership for Astronomy Research and Education (CAMPARE) program represents a new and innovative kind of research program for undergraduates: one that can effectively carry out the goal of recruiting qualified minority and female students to participate in Astronomy and Planetary Science research opportunities, while mentoring them in a way to maximize the chance that these students will persist in obtaining their undergraduate degrees in STEM fields, and potentially go on to obtain their PhDs or pursue careers in those fields. The members of CAMPARE comprise a network of comprehensive universities and community colleges in Southern California and Arizona (most of which are minority serving institutions), and four major research institutions (University of Arizona Steward Observatory, the SETI Institute, and JPL/Caltech). Most undergraduate research programs focus on a single research institution. By having multiple institutions, we significantly broaden the opportunities for students, both in terms of breadth of research topics and geographical location. In its first three years, the CAMPARE program has had 20 undergraduates from two CSU campuses, both Hispanic Serving Institutions, take part in research and educational activities at four research institutions, the University of Arizona Steward Observatory, the SETI Institute, and JPL/Caltech. Of the 20 participants, 9 are women and 11 are men, a much more even split than is typical in Astronomy research programs; 10 are Hispanic, 2 are African American, and 1 is part Native American, including 2 female Hispanic and 2 female African-American participants, an exceptionally high participation rate (65%) for students from underrepresented minority groups. Of the five participants who have graduated since the program began, two are in graduate programs in Physics or Astronomy, two are pursuing a K-12 teaching credential, and one has enlisted in the Nuclear Propulsion Officer Candidate

Promising and Established Investigators' Experiences Participating in the National Athletic Trainers' Association Foundation Research Mentor Program.

Science.gov (United States)

Nottingham, Sara L; Mazerolle, Stephanie M; Barrett, Jessica L

2017-04-01

  Mentorship is a helpful resource for individuals who transition from doctoral student to tenure-track faculty member. The National Athletic Trainers' Association (NATA) Research & Education Foundation offers a Research Mentor Program to provide mentorship to promising investigators, particularly as they work to establish independent lines of research.   To gain the perspectives of promising and established investigators on their participation in the NATA Foundation Research Mentor Program.   Qualitative, phenomenological research.   Higher education institutions.   Seven promising investigators (5 women, 2 men) and 7 established investigators (2 women, 5 men), all of whom had completed the NATA Foundation Research Mentor Program. Data Collection and Analysis We developed and piloted intervi: ew guides designed to gain participants' perspectives on their experiences participating in the NATA Foundation Research Mentor Program. Semistructured telephone interviews were completed with each individual and transcribed verbatim. Data were analyzed using a phenomenological approach, and saturation was obtained. Trustworthiness was established with the use of member checking, multiple-analyst triangulation, and data-source triangulation.   Three themes emerged from the interviews: (1) motivation, (2) collaboration, and (3) resources. Participants were motivated to become involved because they saw the value of mentorship, and mentees desired guidance in their research. Participants believed that collaboration on a project contributed to a positive relationship, and they also desired additional program and professional resources to support novice faculty.   Promising and established investigators should be encouraged to engage in mentoring relationships to facilitate mentees' research agendas and professional development. The NATA Foundation and athletic training profession may consider providing additional resources for novice faculty, such as training on

Suitability of customer relationship management systems for the management of study participants in biomedical research.

Science.gov (United States)

Schwanke, J; Rienhoff, O; Schulze, T G; Nussbeck, S Y

2013-01-01

Longitudinal biomedical research projects study patients or participants over a course of time. No IT solution is known that can manage study participants, enhance quality of data, support re-contacting of participants, plan study visits, and keep track of informed consent procedures and recruitments that may be subject to change over time. In business settings management of personal is one of the major aspects of customer relationship management systems (CRMS). To evaluate whether CRMS are suitable IT solutions for study participant management in biomedical research. Three boards of experts in the field of biomedical research were consulted to get an insight into recent IT developments regarding study participant management systems (SPMS). Subsequently, a requirements analysis was performed with stakeholders of a major biomedical research project. The successive suitability evaluation was based on the comparison of the identified requirements with the features of six CRMS. Independently of each other, the interviewed expert boards confirmed that there is no generic IT solution for the management of participants. Sixty-four requirements were identified and prioritized in a requirements analysis. The best CRMS was able to fulfill forty-two of these requirements. The non-fulfilled requirements demand an adaption of the CRMS, consuming time and resources, reducing the update compatibility, the system's suitability, and the security of the CRMS. A specific solution for the SPMS is favored instead of a generic and commercially-oriented CRMS. Therefore, the development of a small and specific SPMS solution was commenced and is currently on the way to completion.

Strengthening the educational value of undergraduate participation in research as part of a psychology department subject pool.

Science.gov (United States)

Moyer, Anne; Franklin, Nancy

2011-03-01

Participating in research must be an educational experience for students in order to ethically justify its inclusion as a requirement in college courses. Introductory Psychology students (N = 280) completed a written class assignment describing their research participation as a means to enhance this educational mission. Approximately half of students spontaneously mentioned something positive about the significance of the research or what they learned, with the remainder providing neutral, mixed, or negative comments. Students could articulate clearly and knowledgeably about the research in which they had participated. Such an assignment is an effective means to foster an understanding of the science of psychology.

Pockets of Participation: Revisiting Child-Centred Participation Research

Science.gov (United States)

Franks, Myfanwy

2011-01-01

This article revisits the theme of the clash of interests and power relations at work in participatory research which is prescribed from above. It offers a possible route toward solving conflict between adult-led research carried out by young researchers, funding requirements and organisational constraints. The article explores issues of…

Truth in Advertising: Disclosure of Participant Payment in Research Recruitment Materials.

Science.gov (United States)

Gelinas, Luke; Lynch, Holly Fernandez; Largent, Emily A; Shachar, Carmel; Cohen, I Glenn; Bierer, Barbara E

2018-05-01

The practice of paying research participants has received significant attention in the bioethics literature, but the focus has been almost exclusively on consideration of factors relevant to determining acceptable payment amounts. Surprisingly little attention has been paid to what happens once the payment amount is set. What are the ethical parameters around how offers of payment may be advertised to prospective participants? This article seeks to answer this question, focusing on the ethical and practical issues associated with disclosing information about payment, and payment amounts in particular, in recruitment materials. We argue that it is permissible-and indeed typically ethically desirable-for recruitment materials to disclose the amount that participants will be paid. Further, we seek to clarify the regulatory guidance on "emphasizing" payment in a way that can facilitate design and review of recruitment materials.

Family-related opinions and stressful situations associated with psychological distress in women undergoing infertility treatment.

Science.gov (United States)

Takaki, Jiro; Hibino, Yuri

2014-09-02

The purpose of this study is to investigate how family-related opinions and stressful situations are related to psychological distress in women undergoing infertility treatment. The subjects in this cross-sectional study were recruited from female patients undergoing infertility treatment (n = 2540) at 70 infertility treatment institutions in Japan. Because of non-participation or missing data, the number of subjects included in the analysis was 635 (response rate, 25.0%). The family-related opinions and stressful situations were evaluated using the original questions. Psychological distress was assessed using a self-report measure, the Kessler Six-question Psychological Distress Scale (K6). The K6 scores of the following participants were significantly (p women should devote themselves to their household duties" those who had considered stopping treatment, those without the opinion that "married life without children is favorable" and those who had experienced stressful situations such as inadequate explanation by doctors, frustration of multiple failed attempts, differences of opinion with the partner, and lack of knowledge regarding when to stop treatment. Family-related opinions and stressful situations associated with psychological distress in women undergoing infertility treatment are outlined. The results of this study may contribute to the prevention of and care for psychological distress in female patients undergoing infertility treatment.

Perceptions of parents on the participation of their infants in clinical research

DEFF Research Database (Denmark)

Gammelgaard, A; Knudsen, Lisbeth E.; Bisgaard, H

2006-01-01

OBJECTIVE: To analyse the motivations and perceptions of parents on the participation of their infants and young children in a comprehensive and invasive clinical research study. METHODS: Semistructured qualitative interviews were conducted with 23 mothers with asthma whose infants and young...... children were participating in the Copenhagen Prospective Study on Asthma in Childhood. The interviews were audiotaped, transcribed and analysed using the template analysis method. RESULTS: Parents were motivated by altruism and by the opportunity to get their child checked regularly by medical experts...... to prevent the possible development of asthma. Parents found it very important that their children enjoyed their visits to the research clinic, and that they could withdraw from the study if their child started responding negatively to those visits. No apparent difference was seen in the attitude between...

Participants' Reactions to and Suggestions for Conducting Intimate Partner Violence Research: A Study of Rural Young Adults.

Science.gov (United States)

Edwards, Katie M; Greaney, Kayleigh; Palmer, Kelly M

2016-01-01

To document rural young adults' reasons for emotional reactions to participating in intimate partner violence (IPV) research as well as to hear young adults' perspectives on how to most effectively conduct comprehensive IPV research in their rural communities. The data presented in this paper draw from 2 studies (ie, an online survey study and an in-person or telephone interview study) that included the same 16 US rural counties in New England and Appalachia. Participants, 47% of whom were in both studies, were young (age range 18-24), white (92%-94%), heterosexual (89%-90%), female (62%-68%), and mostly low to middle income. Nine percent of participants reported they were upset by the questions due to personal experiences with IPV or for other reasons not related to personal IPV experiences. Forty percent of participants reported they personally benefited from participating in the study, and they provided various reasons for this benefit. Regarding suggestions for conducting IPV research with rural young adults, participants believed that both online recruitment and online data collection methods were the best ways to engage young adults, although many participants suggested that more than 1 modality was ideal, which underscores the need for multimethod approaches when conducting research with rural young adults. These findings are reassuring to those committed to conducting research on sensitive topics with rural populations and also shed light on best practices for conducting this type of research from the voices of rural young adults themselves. © 2015 National Rural Health Association.

Research Participation Decision-Making Among Youth and Parents of Youth With Chronic Health Conditions.

Science.gov (United States)

Pagano-Therrien, Jesica; Sullivan-Bolyai, Susan

The aims of this qualitative descriptive study were to describe how past experiences with research (including communication, information, values, and support) may contribute to research fatigue among youth and parents of youth with HIV, cystic fibrosis, and Type 1 diabetes. Eighteen parents and youth were purposively recruited from outpatient subspecialty clinics at a major academic medical center. They took part in qualitative interviews and completed a demographics form and the Decisional Conflict Scale. Youth participants also completed the Erikson Psychosocial Stage Inventory. Two major themes emerged: Blurred Lines and Hope for the Future. Research fatigue was not found in this sample. Results point to challenges with informed consent in settings where research and clinical care are integrated and suggest that protective factors allow for continued participation without excess burden on youth and parents. Strategies to minimize research fatigue and support engagement in research are offered. Copyright © 2016 National Association of Pediatric Nurse Practitioners. Published by Elsevier Inc. All rights reserved.

Using participant or non-participant observation to explain information behaviour. Participant observation, Non-participant observation, Information behaviour, Hospital pharmacists, Older people

Directory of Open Access Journals (Sweden)

Janet Cooper

2004-01-01

Full Text Available The aim of the paper is to provide guidance on conducting participant and non-participant observation studies of information behaviour. Examines lessons learned during non-participant observation of hospital pharmacists, and participant observation with dependent older people living in their own homes. Describes the methods used in both studies, and discusses the ethical issues involved in gaining access to the subjects. In the hospital setting, professional affiliation between the researcher and the subjects (six pharmacists made access easier to obtain. In the home care setting, access to subjects (seven clients for participant observation (as a care worker was more difficult, as was withdrawal from the field study. In both studies, the observation element was triangulated with survey data. Both studies indicated the fundamental need for trust between the observer and the research subjects. In some situations, professional relations offer instant access and trust, whereas in closed and sensitive situations such as social care, time is required to build up trust. With participant observation, that trust should not be damaged by withdrawal of the researcher from the research setting.

Ecology and Ethics in Participatory Collaborative Action Research: An Argument for the Authentic Participation of Students in Educational Research

Science.gov (United States)

Collins, Steve

2004-01-01

A conception of action research is offered that is collaborative, participatory, targets ethical issues and includes students. Collaboration is "organic" in that all members share the goal of the research and are interdependent in pursuing that goal. Participation is authentic, requiring a continuing negotiation of planning, roles, power…

Motives for participating in a clinical research trial: a pilot study in Brazil.

Science.gov (United States)

Nappo, Solange A; Iafrate, Giovanna B; Sanchez, Zila M

2013-01-10

In the past, clinical study participants have suffered from the experiments that they were subjected to. Study subjects may not understand the study process or may participate in clinical studies because they do not have access to medical care. The objectives of the present study were 1. to analyze the motives that might cause a volunteer to participate as a study subject; 2. to identify the social-demographic profile of this study subjects; and 3. to determine whether the motives to volunteer as a study subject are in accordance with the established legal and ethical principles for research in Brazil. Mixed-methods research was used (a qualitative-quantitative approach). A sample of 80 volunteers underwent a semi-structured interview, which was based on a survey script that was elaborated from discussions with key informants. The sample was randomly selected from a database of clinical study volunteers that was provided by Brazilian clinical study centers. The interviews were recorded and transcribed. Descriptive statistics were used for content analysis, including contingency tables with hypothesis testing. The motivations for clinical study participation were linked to types of benefit. The most frequently encountered motivations were financial gain and therapeutic alternative. Altruism was not a common motivator, and when altruism was present, it was observed as a secondary motivator. All participants reported that they understood the Informed Consent Statement (ICS). However, only two parts of the form were remembered by all of the volunteers: the section on being able to leave the study at any point and the section that stated that there would be some responsible professional at their disposal for the entirety of the study. The present study shows that study participants are primarily motivated by personal benefit when volunteering to participate in clinical studies. Whether these study participants had an integral understanding of the ICS is not clear.

A booklet on participants' rights to improve consent for clinical research: a randomized trial.

Directory of Open Access Journals (Sweden)

Jocelyne R Benatar

Full Text Available OBJECTIVE: Information on the rights of subjects in clinical trials has become increasingly complex and difficult to understand. This study evaluates whether a simple booklet which is relevant to all research studies improves the understanding of rights needed for subjects to provide informed consent. METHODS: 21 currently used informed consent forms (ICF from international clinical trials were separated into information related to the specific research study, and general information on participants' rights. A booklet designed to provide information on participants' rights which used simple language was developed to replace this information in current ICF's Readability of each component of ICF's and the booklet was then assessed using the Flesch-Kincaid Reading ease score (FK. To further evaluate the booklet 282 hospital inpatients were randomised to one of three ways to present research information; a standard ICF, the booklet combined with a short ICF, or the booklet combined with a simplified ICF. Comprehension of information related to the research proposal and to participant's rights was assessed by questionnaire. RESULTS: Information related to participants' rights contributed an average of 44% of the words in standard ICFs, and was harder to read than information describing the clinical trial (FK 25 versus (vs. 41 respectively, p = 0.0003. The booklet reduced the number of words and improved FK from 25 to 42. The simplified ICF had a slightly higher FK score than the standard ICF (50 vs. 42. Comprehension assessed in inpatients was better for the booklet and short ICF 62%, (95% confidence interval (CI 56 to 67 correct, or simplified ICF 62% (CI 58 to 68 correct compared to 52%, (CI 47 to 57 correct for the standard ICF, p = 0.009. This was due to better understanding of questions on rights (62% vs. 49% correct, p = 0.0008. Comprehension of study related information was similar for the simplified and standard ICF (60% vs. 64

A booklet on participants' rights to improve consent for clinical research: a randomized trial.

Science.gov (United States)

Benatar, Jocelyne R; Mortimer, John; Stretton, Matthew; Stewart, Ralph A H

2012-01-01

Information on the rights of subjects in clinical trials has become increasingly complex and difficult to understand. This study evaluates whether a simple booklet which is relevant to all research studies improves the understanding of rights needed for subjects to provide informed consent. 21 currently used informed consent forms (ICF) from international clinical trials were separated into information related to the specific research study, and general information on participants' rights. A booklet designed to provide information on participants' rights which used simple language was developed to replace this information in current ICF's Readability of each component of ICF's and the booklet was then assessed using the Flesch-Kincaid Reading ease score (FK). To further evaluate the booklet 282 hospital inpatients were randomised to one of three ways to present research information; a standard ICF, the booklet combined with a short ICF, or the booklet combined with a simplified ICF. Comprehension of information related to the research proposal and to participant's rights was assessed by questionnaire. Information related to participants' rights contributed an average of 44% of the words in standard ICFs, and was harder to read than information describing the clinical trial (FK 25 versus (vs.) 41 respectively, p = 0.0003). The booklet reduced the number of words and improved FK from 25 to 42. The simplified ICF had a slightly higher FK score than the standard ICF (50 vs. 42). Comprehension assessed in inpatients was better for the booklet and short ICF 62%, (95% confidence interval (CI) 56 to 67) correct, or simplified ICF 62% (CI 58 to 68) correct compared to 52%, (CI 47 to 57) correct for the standard ICF, p = 0.009. This was due to better understanding of questions on rights (62% vs. 49% correct, p = 0.0008). Comprehension of study related information was similar for the simplified and standard ICF (60% vs. 64% correct, p = 0.68). A booklet

Researcher readiness for participating in community-engaged dissemination and implementation research: a conceptual framework of core competencies.

Science.gov (United States)

Shea, Christopher M; Young, Tiffany L; Powell, Byron J; Rohweder, Catherine; Enga, Zoe K; Scott, Jennifer E; Carter-Edwards, Lori; Corbie-Smith, Giselle

2017-09-01

Participating in community-engaged dissemination and implementation (CEDI) research is challenging for a variety of reasons. Currently, there is not specific guidance or a tool available for researchers to assess their readiness to conduct CEDI research. We propose a conceptual framework that identifies detailed competencies for researchers participating in CEDI and maps these competencies to domains. The framework is a necessary step toward developing a CEDI research readiness survey that measures a researcher's attitudes, willingness, and self-reported ability for acquiring the knowledge and performing the behaviors necessary for effective community engagement. The conceptual framework for CEDI competencies was developed by a team of eight faculty and staff affiliated with a university's Clinical and Translational Science Award (CTSA). The authors developed CEDI competencies by identifying the attitudes, knowledge, and behaviors necessary for carrying out commonly accepted CE principles. After collectively developing an initial list of competencies, team members individually mapped each competency to a single domain that provided the best fit. Following the individual mapping, the group held two sessions in which the sorting preferences were shared and discrepancies were discussed until consensus was reached. During this discussion, modifications to wording of competencies and domains were made as needed. The team then engaged five community stakeholders to review and modify the competencies and domains. The CEDI framework consists of 40 competencies organized into nine domains: perceived value of CE in D&I research, introspection and openness, knowledge of community characteristics, appreciation for stakeholder's experience with and attitudes toward research, preparing the partnership for collaborative decision-making, collaborative planning for the research design and goals, communication effectiveness, equitable distribution of resources and credit, and

Research Status and Feasibility Analysis on the Participation in International Joint Studies for Radionuclide and Colloid Migration Using Foreign Underground Research Facilities

Energy Technology Data Exchange (ETDEWEB)

Baik, Min Hoon; Park, Chung Kyun; Lee, Jae Kwang; Choi, Jong Won

2007-12-15

The research status of the potential international joint projects that we can join were analyzed by investigating world-wide underground research facilities. Based upon the investigations, we visited Aspo in Sweden and GTS in Switzerland, discussed about the participation in the international joint projects and mutual cooperation, and then discussed in detail about time and method for the participation by inviting an expert from Nagra. It is resulted from the investigations and discussions that it is most relevant to participate in the following two international joint projects. 1) Task Force on Modelling of Groundwater Flow and Transport of Solutes in Aspo, 2) CFM project in GTS. We also summarized the on-going current status for the participation in the two international joint projects.

Research participants' skills development as HIV prevention peer educators in their communities.

Science.gov (United States)

Morar, Neetha Shagan; Naidoo, Sarita; Goolam, Ahmed; Ramjee, Gita

2016-06-01

This article describes the influence of a peer education programme on skills development among 22 women participating in HIV prevention trials. Interviews were used to collect data on peer educator experiences and their opinions of the trainings. The training enhanced their agency and confidence to engage their family and community on health promotion, including HIV prevention research procedures, thus improving their self-esteem and communication skills. Training and partnering with clinical trial participants as peer educators is an effective and sustainable community-based approach for HIV prevention.

Split views among parents regarding children's right to decide about participation in research: a questionnaire survey.

Science.gov (United States)

Swartling, U; Helgesson, G; Hansson, M G; Ludvigsson, J

2009-07-01

Based on extensive questionnaire data, this paper focuses on parents' views about children's right to decide about participation in research. The data originates from 4000 families participating in a longitudinal prospective screening as 1997. Although current regulations and recommendations underline that children should have influence over their participation, many parents in this study disagree. Most (66%) were positive providing information to the child about relevant aspects of the study. However, responding parents were split about whether or not children should at some point be allowed decisional authority when participating in research: 41.6% of the parents reported being against or unsure. Those who responded positively believed that children should be allowed to decide about blood-sampling procedures (70%), but to a less extent about participation (48.5%), analyses of samples (19.7%) and biological bank storage (15.4%). That as many as possible should remain in the study, and that children do not have the competence to understand the consequences for research was strongly stressed by respondents who do not think children should have a right to decide. When asked what interests they consider most important in paediatric research, child autonomy and decision-making was ranked lowest. We discuss the implications of these findings.

Accessing health services through the back door: a qualitative interview study investigating reasons why people participate in health research in Canada.

Science.gov (United States)

Townsend, Anne; Cox, Susan M

2013-10-12

Although there is extensive information about why people participate in clinical trials, studies are largely based on quantitative evidence and typically focus on single conditions. Over the last decade investigations into why people volunteer for health research have become increasingly prominent across diverse research settings, offering variable based explanations of participation patterns driven primarily by recruitment concerns. Therapeutic misconception and altruism have emerged as predominant themes in this literature on motivations to participate in health research. This paper contributes to more recent qualitative approaches to understanding how and why people come to participate in various types of health research. We focus on the experience of participating and the meanings research participation has for people within the context of their lives and their health and illness biographies. This is a qualitative exploratory study informed by grounded theory strategies. Thirty-nine participants recruited in British Columbia and Manitoba, Canada, who had taken part in a diverse range of health research studies participated in semi-structured interviews. Participants described their experiences of health research participation including motivations for volunteering. Interviews were recorded, transcribed, and analyzed using constant comparisons. Coding and data management was supported by Nvivo-7. A predominant theme to emerge was 'participation in health research to access health services.' Participants described research as ways of accessing: (1) Medications that offered (hope of) relief; (2) better care; (3) technologies for monitoring health or illness. Participants perceived standard medical care to be a "trial and error" process akin to research, which further blurred the boundaries between research and treatment. Our findings have implications for recruitment, informed consent, and the dichotomizing of medical/health procedures as either research or

Community participation in primary care in Ireland: the need for implementation research.

LENUS (Irish Health Repository)

McEvoy, Rachel

2012-04-30

There are now several decades of history of community participation in health, with significant international evidence to suggest that there is much to be gained by primary health services and disadvantaged communities working in partnership.In this paper we provide an overview of community participation in primary care, establishing the policy context in which a recent \\'Joint Initiative on Community Participation in Primary Health Care\\' was developed in Ireland. This Initiative was designed to support the involvement of disadvantaged communities and groups in the development of primary health care services at local level.An independent formative evaluation of the Joint Initiative took place between September 2009 and April 2010. We present a summary of key findings from this evaluation. We pay particular attention to the issue of sustaining community participation in newly developed Primary Care Teams (PCTs) in the current and changing economic climate, an issue considered crucial if the documented positive impacts of the Joint Initiative are to be maintained and the potential for health gains in the longer term are to be realised.We then argue that the Joint Initiative referred to in this paper clearly provides a strong prototype for community participation in PCTs in Ireland. We also ask whether it can be replicated across all PCTs in the country and embedded as a core part of thinking and everyday health care. We highlight the need for research to build knowledge about the ways in which innovations such as this can be embedded into ongoing, routine healthcare practice. This research agenda will have relevance for policy makers, practitioners and evaluators in Ireland and other healthcare jurisdictions.

Challenges in the Use of Social Networking Sites to Trace Potential Research Participants

Science.gov (United States)

Marsh, Jackie; Bishop, Julia C.

2014-01-01

This paper reports on a number of challenges faced in tracing contributors to research projects that were originally conducted many decades previously. The need to trace contributors in this way arises in projects which focus on involving research participants in previous studies who have not been maintained on a database, or with whom the…

Building Bridges across Knowledge Systems: Ubuntu and Participative Research Paradigms in Bantu Communities

Science.gov (United States)

Muwanga-Zake, J. W. F.

2009-01-01

This paper discusses how Ubuntu as a philosophy and a methodology was used among Bantu in South Africa together with participative Western paradigms in evaluating an educational computer game. The paper argues that research among Bantu has to articulate research experiences within Ubuntu paradigms if valid outcomes are to be realised. (Contains 1…

Pediatric oncologists' attitudes towards involving adolescents in decision-making concerning research participation.

NARCIS (Netherlands)

Vries, M.C. de; Wit, J.M.; Engberts, D.P.; Kaspers, G.J.L.; Leeuwen, E. van

2010-01-01

BACKGROUND: Various regulations and guidelines stipulate the importance of involving adolescents in decision-making concerning research participation. Several studies have shown that in the context of pediatric oncology this involvement is difficult to achieve due to emotional stress, the complexity

Participative mental health consumer research for improving physical health care: An integrative review.

Science.gov (United States)

Happell, Brenda; Ewart, Stephanie B; Platania-Phung, Chris; Stanton, Robert

2016-10-01

People with mental illness have a significantly lower life expectancy and higher rates of chronic physical illnesses than the general population. Health care system reform to improve access and quality is greatly needed to address this inequity. The inclusion of consumers of mental health services as co-investigators in research is likely to enhance service reform. In light of this, the current paper reviews mental health consumer focussed research conducted to date, addressing the neglect of physical health in mental health care and initiatives with the aim of improving physical health care. The international literature on physical healthcare in the context of mental health services was searched for articles, including mental health consumers in research roles, via Medline, CINAHL and Google Scholar, in October 2015. Four studies where mental health consumers participated as researchers were identified. Three studies involved qualitative research on barriers and facilitators to physical health care access, and a fourth study on developing technologies for more effective communication between GPs and patients. This review found that participatory mental health consumer research in physical health care reform has only become visible in the academic literature in 2015. Heightened consideration of mental health consumer participation in research is required by health care providers and researchers. Mental health nurses can provide leadership in increasing mental health consumer research on integrated care directed towards reducing the health gap between people with and without mental illness. © 2016 Australian College of Mental Health Nurses Inc.

Problems and challenges in care for children undergoing radiotherapy- A research paper

International Nuclear Information System (INIS)

Mucheusi, L.

2006-01-01

for children undergoing radiotherapy and their parents, a paediatric radiographer may be one welcome solution to relieve the anxiety and stress during this difficult time in their lives. given the various factors, no one solution can be deemed ultimate in dealing with this complex situation. thus further efforts are needed to bring about workable solutions to this problem depending on the circumstances and situation

Structural and Interpersonal Benefits and Risks of Participation in HIV Research: Perspectives of Female Sex Workers in Guatemala

Science.gov (United States)

Goldenberg, Shira M.; Mindt, Monica Rivera; Jimenez, Teresita Rocha; Brouwer, Kimberly C.; Miranda, Sonia Morales; Fisher., Celia B.

2016-01-01

This study explored perceived benefits and risks of participation in HIV research among 33 female sex workers in Tecun Uman, Guatemala. Stigma associated with sex work and HIV was a critical barrier to research participation. Key benefits of participation included access to HIV/STI prevention and testing, as well as positive and trusting relationships between sex workers and research teams. Control exerted by managers had mixed influences on perceived research risks and benefits. Results underscore the critical need for HIV investigators to develop population-tailored procedures to reduce stigma, engage managers, and reinforce trusting, reciprocal relationships between sex work communities and researchers. PMID:27840564

Our Anonymous Online Research Participants Are Not Always Anonymous: Is This a Problem?

Science.gov (United States)

Dawson, Phillip

2014-01-01

When educational research is conducted online, we sometimes promise our participants that they will be anonymous--but do we deliver on this promise? We have been warned since 1996 to be careful when using direct quotes in Internet research, as full-text web search engines make it easy to find chunks of text online. This paper details an empirical…

Radiation risk statement in the participant information for a research protocol that involves exposure to ionising radiation

International Nuclear Information System (INIS)

Caon, Martin

2005-01-01

A Human Research Ethics Committee (HREC) is required to scrutinise the protocols of clinical drug trials that recruit patients as participants. If the study involves exposing the participants to ionizing radiation the information provided to the participant should contain a radiation risk statement that is understandable by the Committee and the participant. The information that should be included in the risk statement is available from a variety of published sources and is discussed. The ARPANSA Code of Practice Exposure of Humans to Ionizing Radiation for Research Purposes (2005) states explicitly what the responsibilities of the researcher and the HREC are. Some research protocols do not provide the information required by good radiation protection practice and explicitly called for by the Code. Nine points (including: state that ionizing radiation is involved; that the radiation is additional to standard care; the effective dose to be received; the dose compared to natural background; the dose to the most exposed organs; a statement of risk; the benefits accruing from the exposure; ask the participant about previous exposures; name a contact person from whom information may be sought) that should be considered for inclusion in the participant information are presented and discussed. An example of a radiation risk statement is provided

Accessing health services through the back door: a qualitative interview study investigating reasons why people participate in health research in Canada

Science.gov (United States)

2013-01-01

Background Although there is extensive information about why people participate in clinical trials, studies are largely based on quantitative evidence and typically focus on single conditions. Over the last decade investigations into why people volunteer for health research have become increasingly prominent across diverse research settings, offering variable based explanations of participation patterns driven primarily by recruitment concerns. Therapeutic misconception and altruism have emerged as predominant themes in this literature on motivations to participate in health research. This paper contributes to more recent qualitative approaches to understanding how and why people come to participate in various types of health research. We focus on the experience of participating and the meanings research participation has for people within the context of their lives and their health and illness biographies. Methods This is a qualitative exploratory study informed by grounded theory strategies. Thirty-nine participants recruited in British Columbia and Manitoba, Canada, who had taken part in a diverse range of health research studies participated in semi-structured interviews. Participants described their experiences of health research participation including motivations for volunteering. Interviews were recorded, transcribed, and analyzed using constant comparisons. Coding and data management was supported by Nvivo-7. Results A predominant theme to emerge was 'participation in health research to access health services.’ Participants described research as ways of accessing: (1) Medications that offered (hope of) relief; (2) better care; (3) technologies for monitoring health or illness. Participants perceived standard medical care to be a “trial and error” process akin to research, which further blurred the boundaries between research and treatment. Conclusions Our findings have implications for recruitment, informed consent, and the dichotomizing of medical

The Experience of Surrogate Decision Makers on Being Approached for Consent for Patient Participation in Research. A Multicenter Study.

Science.gov (United States)

Burns, Karen E A; Prats, Clara Juando; Maione, Maria; Lanceta, Mary; Zubrinich, Celia; Jeffs, Lianne; Smith, Orla M

2017-02-01

Recruitment in critical care research differs from other contexts in important ways: patients lack decision-making capacity, uncertainty exists regarding patient prognosis, and critical illnesses are often associated with appreciable morbidity and mortality. We aimed to describe the experiences of surrogate decision makers (SDMs) in being approached for consent for critically ill patients to participate in research. A multicenter, qualitative study involving semistructured interviews with 26 SDMs, who provided or declined surrogate consent for research participation, at 5 Canadian centers nested within a multicenter observational study of research recruitment practices. Transcripts were reviewed by three qualitative researchers, and data were analyzed using grounded theory and a narrative critical analysis. SDMs were guided by an overarching desire for the patient to live. Surrogate research decision-making involved three sequential stages: (1) being approached; (2) reflecting on participation; and (3) making a decision. In stage 1, SDMs identified factors (their expectations, how they were approached, the attributes of the person approaching, and study risks and benefits) that characterized their consent encounter and affirmed a preference to be approached in person. If SDMs perceived the risk of participation to be too high or felt patients may not benefit from participation, they did not contemplate further. In stage 2, SDMs who knew the patient's wishes or had a deeper understanding of research prioritized the patient's wishes and the perceived benefits of participation. Without this information, SDMs prioritized obtaining more and better care for the patient, considered what was in their mutual best interests, and valued healthcare professional's knowledge. Trust in healthcare professionals was essential to proceeding further. In stage 3, SDMs considered six factors in rendering decisions. SDMs engaged in three sequential stages and considered six factors in

Defining the culture and attitude towards dietary management actions in people undergoing haemodialysis.

Science.gov (United States)

Onbe, Hiromi; Oka, Michiyo; Shimada, Mikiko; Motegi, Emiko; Motoi, Yuji; Okabe, Ayako

2013-06-01

The present study was designed to clarify the structure of culture and the three components of attitude in a desirable attitude toward dietary management actions in outpatient haemodialysis patients who are in the maintenance phase of treatment. The participants in the study included nine patients undergoing chronic maintenance haemodialysis who have received guidance related to diet and had good test results. Ethnography, by means of participant observation and semi-structured interviews, was chosen as the research method. Desirable attitude of haemodialysis patients in dietary management actions was found to have a chronological progression in one of the components of attitude: propensity of behaviour. Change in behaviour was influenced by affect and cognition. At the base of the structure of attitude lay three factors: valuing cooking with seasonal ingredients and creating special meals for seasonal occasions; family draws near, shows care and gives support; and belief in information perceived to be good for the health, which was influenced by three components of attitude: affect, cognition, and propensity of behaviour, as well as culture. Participants continue to value the food culture that they grew up with, which involves their affect towards, and cognition of, dietary management. © 2013 European Dialysis and Transplant Nurses Association/European Renal Care Association.

Kinetics of salivary pH after acidic beverage intake by patients undergoing orthodontic treatment.

Science.gov (United States)

Turssi, Cecilia P; Silva, Carolina S; Bridi, Enrico C; Amaral, Flavia Lb; Franca, Fabiana Mg; Basting, Roberta T

2015-01-01

The saliva of patients undergoing orthodontic treatment with fixed appliances can potentially present a delay in the diluting, clearing, and buffering of dietary acids due to an increased number of retention areas. The aim of this clinical trial was to compare salivary pH kinetics of patients with and without orthodontic treatment, following the intake of an acidic beverage. Twenty participants undergoing orthodontic treatment and 20 control counterparts had their saliva assessed for flow rate, pH, and buffering capacity. There was no significant difference between salivary parameters in participants with or without an orthodontic appliance. Salivary pH recovery following acidic beverage intake was slower in the orthodontic subjects compared to controls. Patients with fixed orthodontic appliances, therefore, seem to be at higher risk of dental erosion, suggesting that dietary advice and preventive care need to be implemented during orthodontic treatment.

The use of participant-observation protocol in an industrial engineering research.

Science.gov (United States)

Silveira e Silva, Renato da; Sznelwar, Laerte Idal; D'Afonseca e Silva, Victor

2012-01-01

Based on literature, this article aims to present the "participant-observation' research protocol, and its practical application in the industrial engineering field, more specifically within the area of design development, and in the case shown by this article, of interiors' design. The main target is to identify the concept of the method, i.e., from its characteristics to structure a general sense about the subject, so that the protocol can be used in different areas of knowledge, especially those ones which are committed with the scientific research involving the expertise from researchers, and subjective feelings and opinions of the users of an engineering product, and how this knowledge can be benefic for product design, contributing since the earliest stage of design.

Preparation and participation of undergraduate students to inform culturally sensitive research.

Science.gov (United States)

Wells, Jo Nell; Cagle, Carolyn Spence

2009-07-01

Most student work as research assistants occurs at the graduate level of nursing education, and little is known about the role of undergraduate students as research assistants (RAs) in major research projects. Based on our desire to study Mexican American (MA) cancer caregivers, we needed bilingual and bicultural RAs to serve as data collectors with women who spoke Spanish and possessed cultural beliefs that influenced their caregiving. Following successful recruitment, orientation, and mentoring based on Bandura's social learning theory [Bandura, A., 2001. Social learning theory: an agentic perspective. Annual Review of Psychology 52, 1-26] and accepted teaching-learning principles, RAs engaged in various behaviors that facilitated study outcomes. Faculty researchers, RAs, and study participants benefitted greatly from the undergraduate student involvement in this project. This article describes successful student inclusion approaches, ongoing faculty-RA interactions, and lessons learned from the research team experience. Guidelines discussed support the potential for making the undergraduate RA role a useful and unique learning experience.

Motives for participating in a clinical research trial: a pilot study in Brazil

Directory of Open Access Journals (Sweden)

Nappo Solange A

2013-01-01

Full Text Available Abstract Background In the past, clinical study participants have suffered from the experiments that they were subjected to. Study subjects may not understand the study process or may participate in clinical studies because they do not have access to medical care. The objectives of the present study were 1. to analyze the motives that might cause a volunteer to participate as a study subject; 2. to identify the social-demographic profile of this study subjects; and 3. to determine whether the motives to volunteer as a study subject are in accordance with the established legal and ethical principles for research in Brazil. Methods Mixed-methods research was used (a qualitative-quantitative approach. A sample of 80 volunteers underwent a semi-structured interview, which was based on a survey script that was elaborated from discussions with key informants. The sample was randomly selected from a database of clinical study volunteers that was provided by Brazilian clinical study centers. The interviews were recorded and transcribed. Descriptive statistics were used for content analysis, including contingency tables with hypothesis testing. Results The motivations for clinical study participation were linked to types of benefit. The most frequently encountered motivations were financial gain and therapeutic alternative. Altruism was not a common motivator, and when altruism was present, it was observed as a secondary motivator. All participants reported that they understood the Informed Consent Statement (ICS. However, only two parts of the form were remembered by all of the volunteers: the section on being able to leave the study at any point and the section that stated that there would be some responsible professional at their disposal for the entirety of the study. Conclusions The present study shows that study participants are primarily motivated by personal benefit when volunteering to participate in clinical studies. Whether these study

?Decision-making capacity for research participation among addicted people: a cross-sectional study?

OpenAIRE

Mor?n-S?nchez, In?s; Luna, Aurelio; S?nchez-Mu?oz, Maria; Aguilera-Alcaraz, Beatriz; P?rez-C?rceles, Maria D.

2016-01-01

Background Informed consent is a key element of ethical clinical research. Addicted population may be at risk for impaired consent capacity. However, very little research has focused on their comprehension of consent forms. The aim of this study is to assess the capacity of addicted individuals to provide consent to research. Methods 53 subjects with DSM-5 diagnoses of a Substance Use Disorder (SUD) and 50 non psychiatric comparison subjects (NPCs) participated in the survey from December 201...

A Trend Analysis of Participant and Setting Characteristics in Autism Intervention Research

Science.gov (United States)

Crosland, Kimberly A.; Clarke, Shelley; Dunlap, Glen

2013-01-01

The current trend analysis was conducted to empirically document the characteristics of individuals with autism who participated in intervention research published between 1995 and 2009 in three journals ("Journal of Applied Behavior Analysis," "Journal of Autism and Developmental Disorders," and "Focus on Autism and Other…

Credentialing for participation in clinical trials

International Nuclear Information System (INIS)

Followill, David S.; Urie, Marcia; Galvin, James M.; Ulin, Kenneth; Xiao, Ying; FitzGerald, Thomas J.

2012-01-01

The National Cancer Institute (NCI) clinical cooperative groups have been instrumental over the past 50 years in developing clinical trials and evidence-based clinical trial processes for improvements in patient care. The cooperative groups are undergoing a transformation process to launch, conduct, and publish clinical trials more rapidly. Institutional participation in clinical trials can be made more efficient and include the expansion of relationships with international partners. This paper reviews the current processes that are in use in radiation therapy trials and the importance of maintaining effective credentialing strategies to assure the quality of the outcomes of clinical trials. The paper offers strategies to streamline and harmonize credentialing tools and processes moving forward as the NCI undergoes transformative change in the conduct of clinical trials.

Credentialing for participation in clinical trials

Energy Technology Data Exchange (ETDEWEB)

Followill, David S. [Radiological Physics Center, Department of Radiation Physics, University of Texas MD Anderson Cancer Center, Houston, TX (United States); Urie, Marcia [Quality Assurance Review Center, Department of Radiation Oncology, University of Massachusetts Medical School, Lincoln, RI (United States); Galvin, James M. [Department of Radiation Oncology, Jefferson Medical College, Thomas Jefferson University, Philadelphia, PA (United States); Radiation Therapy Oncology Group, Philadelphia, PA (United States); Ulin, Kenneth [Quality Assurance Review Center, Department of Radiation Oncology, University of Massachusetts Medical School, Lincoln, RI (United States); Department of Radiation Oncology, University of Massachusetts Medical School, Worcester, MA (United States); Xiao, Ying [Department of Radiation Oncology, Jefferson Medical College, Thomas Jefferson University, Philadelphia, PA (United States); Radiation Therapy Oncology Group, Philadelphia, PA (United States); FitzGerald, Thomas J., E-mail: dfollowi@mdanderson.org [Quality Assurance Review Center, Department of Radiation Oncology, University of Massachusetts Medical School, Lincoln, RI (United States); Department of Radiation Oncology, University of Massachusetts Medical School, Worcester, MA (United States)

2012-12-26

The National Cancer Institute (NCI) clinical cooperative groups have been instrumental over the past 50 years in developing clinical trials and evidence-based clinical trial processes for improvements in patient care. The cooperative groups are undergoing a transformation process to launch, conduct, and publish clinical trials more rapidly. Institutional participation in clinical trials can be made more efficient and include the expansion of relationships with international partners. This paper reviews the current processes that are in use in radiation therapy trials and the importance of maintaining effective credentialing strategies to assure the quality of the outcomes of clinical trials. The paper offers strategies to streamline and harmonize credentialing tools and processes moving forward as the NCI undergoes transformative change in the conduct of clinical trials.

Factors that influence parental decisions to participate in clinical research: consenters vs nonconsenters.

Science.gov (United States)

Hoberman, Alejandro; Shaikh, Nader; Bhatnagar, Sonika; Haralam, Mary Ann; Kearney, Diana H; Colborn, D Kathleen; Kienholz, Michelle L; Wang, Li; Bunker, Clareann H; Keren, Ron; Carpenter, Myra A; Greenfield, Saul P; Pohl, Hans G; Mathews, Ranjiv; Moxey-Mims, Marva; Chesney, Russell W

2013-06-01

A child's health, positive perceptions of the research team and consent process, and altruistic motives play significant roles in the decision-making process for parents who consent for their child to enroll in clinical research. This study identified that nonconsenting parents were better educated, had private insurance, showed lower levels of altruism, and less understanding of study design. To determine the factors associated with parental consent for their child's participation in a randomized, placebo-controlled trial. Cross-sectional survey conducted from July 2008 to May 2011. The survey was an ancillary study to the Randomized Intervention for Children with VesicoUreteral Reflux Study. Seven children's hospitals participating in a randomized trial evaluating management of children with vesicoureteral reflux. Parents asked to provide consent for their child's participation in the randomized trial were invited to complete an anonymous online survey about factors influencing their decision. A total of 120 of the 271 (44%) invited completed the survey; 58 of 125 (46%) who had provided consent and 62 of 144 (43%) who had declined consent completed the survey. A 60-question survey examining child, parent, and study characteristics; parental perception of the study; understanding of the design; external influences; and decision-making process. RESULTS Having graduated from college and private health insurance were associated with a lower likelihood of providing consent. Parents who perceived the trial as having a low degree of risk, resulting in greater benefit to their child and other children, causing little interference with standard care, or exhibiting potential for enhanced care, or who perceived the researcher as professional were significantly more likely to consent to participate. Higher levels of understanding of the randomization process, blinding, and right to withdraw were significantly positively associated with consent to participate. CONCLUSIONS AND

Community Participation in Health Systems Research: A Systematic Review Assessing the State of Research, the Nature of Interventions Involved and the Features of Engagement with Communities.

Science.gov (United States)

George, Asha S; Mehra, Vrinda; Scott, Kerry; Sriram, Veena

2015-01-01

Community participation is a major principle of people centered health systems, with considerable research highlighting its intrinsic value and strategic importance. Existing reviews largely focus on the effectiveness of community participation with less attention to how community participation is supported in health systems intervention research. To explore the extent, nature and quality of community participation in health systems intervention research in low- and middle-income countries. We searched for peer-reviewed, English language literature published between January 2000 and May 2012 through four electronic databases. Search terms combined the concepts of community, capability/participation, health systems research and low- and middle-income countries. The initial search yielded 3,092 articles, of which 260 articles with more than nominal community participation were identified and included. We further excluded 104 articles due to lower levels of community participation across the research cycle and poor description of the process of community participation. Out of the remaining 160 articles with rich community participation, we further examined 64 articles focused on service delivery and governance within health systems research. Most articles were led by authors in high income countries and many did not consistently list critical aspects of study quality. Articles were most likely to describe community participation in health promotion interventions (78%, 202/260), even though they were less participatory than other health systems areas. Community involvement in governance and supply chain management was less common (12%, 30/260 and 9%, 24/260 respectively), but more participatory. Articles cut across all health conditions and varied by scale and duration, with those that were implemented at national scale or over more than five years being mainstreamed by government. Most articles detailed improvements in service availability, accessibility and

Participation of nurses in the execution of clinical research protocol about technological innovation

Directory of Open Access Journals (Sweden)

Luciane Patrícia Andreani Cabral

2015-10-01

Full Text Available AbstractOBJECTIVETo report the nurse's experience of inclusion in interdisciplinary clinical study about technological innovation, involving people with spinal cord injury.METHODDescriptive experience report. The empirical support was based on notes about perspectives and practice of clinical research, with a multi-professional nursing, physical education, physiotherapy and engineering staff.RESULTThe qualification includes the elaboration of the document for the Ethics Committee, familiarization among the members of staff and with the studied topic, and also an immersion into English. The nurse's knowledge gave support to the uptake of participants and time adequacy for data collection, preparation and assistance of the participants during the intervention and after collection. Nursing theories and processes have contributed to reveal risky diagnoses and the plan of care. It was the nurse's role to monitor the risk of overlapping methodological strictness to the human aspect. The skills for the clinical research must be the object of learning, including students in multidisciplinary researches.CONCLUSIONTo qualify the nurse for clinical research and to potentialize its caregiver essence, some changes are needed in the educational system, professional behavior, attitude and educational assistance.

Educating for a Critical Democracy: Civic Participation Reimagined in the Council of Youth Research

Science.gov (United States)

Mirra, Nicole; Morrell, Ernest D.; Cain, Ebony; Scorza, D'Artagnan; Ford, Arlene

2013-01-01

This article explores civic learning, civic participation, and the development of civic agency within the Council of Youth Research (the Council), a program that engages high school students in youth participatory action research projects that challenge school inequalities and mobilize others in pursuit of educational justice. We critique the…

The Use of Facebook in Recruiting Participants for Health Research Purposes: A Systematic Review.

Science.gov (United States)

Whitaker, Christopher; Stevelink, Sharon; Fear, Nicola

2017-08-28

Social media is a popular online tool that allows users to communicate and exchange information. It allows digital content such as pictures, videos and websites to be shared, discussed, republished and endorsed by its users, their friends and businesses. Adverts can be posted and promoted to specific target audiences by demographics such as region, age or gender. Recruiting for health research is complex with strict requirement criteria imposed on the participants. Traditional research recruitment relies on flyers, newspaper adverts, radio and television broadcasts, letters, emails, website listings, and word of mouth. These methods are potentially poor at recruiting hard to reach demographics, can be slow and expensive. Recruitment via social media, in particular Facebook, may be faster and cheaper. The aim of this study was to systematically review the literature regarding the current use and success of Facebook to recruit participants for health research purposes. A literature review was completed in March 2017 in the English language using MEDLINE, EMBASE, Web of Science, PubMed, PsycInfo, Google Scholar, and a hand search of article references. Papers from the past 12 years were included and number of participants, recruitment period, number of impressions, cost per click or participant, and conversion rate extracted. A total of 35 studies were identified from the United States (n=22), Australia (n=9), Canada (n=2), Japan (n=1), and Germany (n=1) and appraised using the Critical Appraisal Skills Programme (CASP) checklist. All focused on the feasibility of recruitment via Facebook, with some (n=10) also testing interventions, such as smoking cessation and depression reduction. Most recruited young age groups (16-24 years), with the remaining targeting specific demographics, for example, military veterans. Information from the 35 studies was analyzed with median values being 264 recruited participants, a 3-month recruitment period, 3.3 million impressions, cost

Games as a Platform for Student Participation in Authentic Scientific Research

DEFF Research Database (Denmark)

Magnussen, Rikke; Damgaard Hansen, Sidse; Planke, Tilo

2014-01-01

for student-research collaboration is to investigate if and how this type of game concept can strengthen authentic experimental practice and the creation of new knowledge in science education. Researchers and game developers tested the game in three separate high school classes (Class 1, 2, and 3). The tests...... were documented using video observations of students playing the game, qualitative interviews, and qualitative and quantitative questionnaires. The focus of the tests has been to study players' motivation and their experience of learning through participation in authentic scientific inquiry....... In questionnaires conducted in the two first test classes students found that the aspects of doing “real scientific research” and solving physics problems were the more interesting aspects of playing the game. However, designing a game that facilitates professional research collaboration while simultaneously...

Sweat, Skepticism, and Uncharted Territory: A Qualitative Study of Opinions on Data Sharing Among Public Health Researchers and Research Participants in Mumbai, India.

Science.gov (United States)

Hate, Ketaki; Meherally, Sanna; Shah More, Neena; Jayaraman, Anuja; Bull, Susan; Parker, Michael; Osrin, David

2015-07-01

Efforts to internalize data sharing in research practice have been driven largely by developing international norms that have not incorporated opinions from researchers in low- and middle-income countries. We sought to identify the issues around ethical data sharing in the context of research involving women and children in urban India. We interviewed researchers, managers, and research participants associated with a Mumbai non-governmental organization, as well as researchers from other organizations and members of ethics committees. We conducted 22 individual semi-structured interviews and involved 44 research participants in focus group discussions. We used framework analysis to examine ideas about data and data sharing in general; its potential benefits or harms, barriers, obligations, and governance; and the requirements for consent. Both researchers and participants were generally in favor of data sharing, although limited experience amplified their reservations. We identified three themes: concerns that the work of data producers may not receive appropriate acknowledgment, skepticism about the process of sharing, and the fact that the terrain of data sharing was essentially uncharted and confusing. To increase data sharing in India, we need to provide guidelines, protocols, and examples of good practice in terms of consent, data preparation, screening of applications, and what individuals and organizations can expect in terms of validation, acknowledgment, and authorship. © The Author(s) 2015.

Virtual reality bringing a new reality to postthoracotomy lung cancer patients via a home-based exercise intervention targeting fatigue while undergoing adjuvant treatment.

Science.gov (United States)

Hoffman, Amy J; Brintnall, Ruth Ann; Brown, Jean K; von Eye, Alexander; Jones, Lee W; Alderink, Gordon; Ritz-Holland, Deborah; Enter, Mark; Patzelt, Lawrence H; VanOtteren, Glenn M

2014-01-01

Little is known about rehabilitation for postthoracotomy non-small cell lung cancer (NSCLC) patients. This research uses a perceived self-efficacy-enhancing light-intensity exercise intervention targeting a priority symptom, cancer-related fatigue (CRF), for postthoracotomy NSCLC patients. This article reports on phase II of a 2-phase study. Phase I focused on initiation and tolerance of exercise during the 6 weeks immediately after thoracotomy, whereas phase II addressed maintenance of exercise for an additional 10 weeks including participants initiating and completing chemotherapy and/or radiation therapy. The objective of this study was to investigate the feasibility, acceptability, and preliminary efficacy of an exercise intervention for postthoracotomy NSCLC patients to include those initiating and completing adjuvant therapy. A single-arm design composed of 7 participants postthoracotomy for NSCLC performed light-intensity exercises using an efficacy-enhancing virtual-reality approach using the Nintendo Wii Fit Plus. Despite most participants undergoing chemotherapy and/or radiation therapy, participants adhered to the intervention at a rate of 88% with no adverse events while giving the intervention high acceptability scores on conclusion. Likewise, participants' CRF scores improved from initiation through the conclusion of the intervention with perceived self-efficacy for walking at a light intensity continuously for 60 minutes, improving significantly upon conclusion over presurgery values. Postthoracotomy NSCLC patients maintained exercise for an additional 10 weeks while undergoing adjuvant therapy showing rehabilitation potential because the exercise intervention was feasible, safe, well tolerated, and highly acceptable showing positive changes in CRF self-management. A randomized controlled trial is needed to further investigate these relationships.

Unfolding Participation

DEFF Research Database (Denmark)

Saad-Sulonen, Joanna; Halskov, Kim; Eriksson, Eva

2015-01-01

The aim of the Unfolding Participation workshop is to outline an agenda for the next 10 years of participatory design (PD) and participatory human computer interaction (HCI) research. We will do that through a double strategy: 1) by critically interrogating the concept of participation (unfolding...... the concept itself), while at the same time, 2) reflecting on the way that participation unfolds across different participatory configurations. We invite researchers and practitioners from PD and HCI and fields in which information technology mediated participation is embedded (e.g. in political studies......, urban planning, participatory arts, business, science and technology studies) to bring a plurality of perspectives and expertise related to participation....

Willingness to participate in genomics research and desire for personal results among underrepresented minority patients: a structured interview study.

Science.gov (United States)

Sanderson, Saskia C; Diefenbach, Michael A; Zinberg, Randi; Horowitz, Carol R; Smirnoff, Margaret; Zweig, Micol; Streicher, Samantha; Jabs, Ethylin Wang; Richardson, Lynne D

2013-10-01

Patients from traditionally underrepresented communities need to be involved in discussions around genomics research including attitudes towards participation and receiving personal results. Structured interviews, including open-ended and closed-ended questions, were conducted with 205 patients in an inner-city hospital outpatient clinic: 48 % of participants self-identified as Black or African American, 29 % Hispanic, 10 % White; 49 % had an annual household income of personal results to be returned was not mentioned, 82 % of participants were willing to participate in genomics research. Reasons for willingness fell into four themes: altruism; benefit to family members; personal health benefit; personal curiosity and improving understanding. Reasons for being unwilling fell into five themes: negative perception of research; not personally relevant; negative feelings about procedures (e.g., blood draws); practical barriers; and fear of results. Participants were more likely to report that they would participate in genomics research if personal results were offered than if they were not offered (89 vs. 62 % respectively, p personal genomic risk results for cancer, heart disease and type 2 diabetes than obesity (89, 89, 91, 80 % respectively, all p personal results was disease-specific worry. There was considerable willingness to participate in and desire for personal results from genomics research in this sample of predominantly low-income, Hispanic and African American patients. When returning results is not practical, or even when it is, alternatively or additionally providing generic information about genomics and health may also be a valuable commodity to underrepresented minority and other populations considering participating in genomics research.

22 CFR 63.4 - Grants to foreign participants to lecture, teach, and engage in research.

Science.gov (United States)

2010-04-01

... 22 Foreign Relations 1 2010-04-01 2010-04-01 false Grants to foreign participants to lecture, teach, and engage in research. 63.4 Section 63.4 Foreign Relations DEPARTMENT OF STATE PUBLIC DIPLOMACY AND EXCHANGES PAYMENTS TO AND ON BEHALF OF PARTICIPANTS IN THE INTERNATIONAL EDUCATIONAL AND CULTURAL...

Rethinking Data Sharing and Human Participant Protection in Social Science Research: Applications from the Qualitative Realm

Directory of Open Access Journals (Sweden)

Dessi Kirilova

2017-09-01

Full Text Available While data sharing is becoming increasingly common in quantitative social inquiry, qualitative data are rarely shared. One factor inhibiting data sharing is a concern about human participant protections and privacy. Protecting the confidentiality and safety of research participants is a concern for both quantitative and qualitative researchers, but it raises specific concerns within the epistemic context of qualitative research. Thus, the applicability of emerging protection models from the quantitative realm must be carefully evaluated for application to the qualitative realm. At the same time, qualitative scholars already employ a variety of strategies for human-participant protection implicitly or informally during the research process. In this practice paper, we assess available strategies for protecting human participants and how they can be deployed. We describe a spectrum of possible data management options, such as de-identification and applying access controls, including some already employed by the Qualitative Data Repository (QDR in tandem with its pilot depositors. Throughout the discussion, we consider the tension between modifying data or restricting access to them, and retaining their analytic value. We argue that developing explicit guidelines for sharing qualitative data generated through interaction with humans will allow scholars to address privacy concerns and increase the secondary use of their data.

Evaluation of self-esteem in cancer patients undergoing chemotherapy treatment

Directory of Open Access Journals (Sweden)

Marilia Aparecida Carvalho Leite

2015-12-01

Full Text Available Objective: to evaluate the self-esteem of cancer patients undergoing chemotherapy. Method: descriptive analytical cross-sectional study with a quantitative approach. Around 156 patients that attended an oncology unit of a mid-sized hospital participated in the study. Results: we found a higher frequency of patients with high self-esteem, but some of them showed average or low self-esteem. The scale showed a Cronbach's alpha value of 0.746, by considering its acceptable internal consistency for the evaluated items. No independent variables showed significant associations with self-esteem. Conclusion: the cancer patients evaluated have presented high self-esteem; thus, it becomes crucial for nursing to plan the assistance of patients undergoing chemotherapy treatments, which enables actions and strategies that meet their physical and psychosocial conditions, aiming to maintain and rehabilitate these people's emotional aspects.

Mapping eParticipation

DEFF Research Database (Denmark)

Rose, Jeremy; Sanford, Clive Carlton

2007-01-01

The emerging research area of eParticipation can be characterized as the study of technology-facilitated citizen participation in (democratic) deliberation and decision-making. Using conventional literature study techniques, we identify 105 articles that are considered to be highly relevant to e......Participation. We develop a definitional schema that suggests different ways of understanding an emerging socio-technical research area and use this schema to map the research contributions identified. This allows us make an initial sketch of the scientific character of the area and its central concerns, theories......, and methods. We extend the analysis to define four central research challenges for the field: understanding technology and participation; the strategic challenge; the design challenge; and the evaluation challenge. This article thus contributes to a developing account of eParticipation, which will help future...

Elucidating the power in empowerment and the participation in participatory action research: a story about research team and elementary school change.

Science.gov (United States)

Dworski-Riggs, Deanne; Langhout, Regina Day

2010-06-01

Community psychologists are increasingly using Participatory Action Research (PAR) as a way to promote social justice by creating conditions that foster empowerment. Yet, little attention has been paid to the differences between the power structure that PAR advocates and the local community power structures. This paper seeks to evaluate the level of participation in a PAR project for multiple stakeholder groups, determine how PAR was adjusted to better fit community norms, and whether our research team was able to facilitate the emergence of PAR by adopting an approach that was relevant to the existing power relations. We conclude that power differences should not be seen as roadblocks to participation, but rather as moments of opportunity for the researchers to refine their methods and for the community and the community psychologist to challenge existing power structures.

Psychological determinants of life satisfaction in women undergoing infertility treatment

OpenAIRE

Aleksandra Anna Dembińska

2016-01-01

Background Infertility treatment is a long-term process, spread out over months, or even years, and carries no guarantee of success. It generates an incessant state of uncertainty which becomes a chronic state of psychological discomfort. Each stage of treatment may become a source of more trouble. Women deciding to undergo infertility treatment are exposed to many negative feelings concerning different aspects of their life. Participants and procedure The present study wa...

The willingness to participate in health research studies of individuals with Turkish migration backgrounds: barriers and resources.

Science.gov (United States)

Dingoyan, D; Schulz, H; Mösko, M

2012-06-01

Lower participation rates of ethnic minorities in health research studies and potential participation barriers are commonly reported. Four semi-structured focus groups of individuals with Turkish migration backgrounds living in Germany were conducted to identify potential participation barriers. Documented statements and superscripted presentation cards by the participants were evaluated with a qualitative content analysis. The following eight potential reasons for the lower participation rates were identified: role of women, lack of knowledge, lack of interest, German-Turkish interactions, mistrust, anxiety, data privacy protection and benefits of the study. Additionally, the following recruitment strategies to enhance participation rates were found: public relations, especially word-of-mouth promotion and contacting Turkish key figures, (non-) tangible incentives and trust building through transparent communication of the project and its conditions. The findings provide a wide range of potential participation barriers and implications that should be considered to enhance the participation rates of minority populations. The willingness to participate in health research studies can be increased through particular efforts, which should be tailored to the recruitment of the underrepresented target population. Copyright © 2012 Elsevier Masson SAS. All rights reserved.

Connecting Participant Observation Positions

DEFF Research Database (Denmark)

McCurdy, Patrick; Uldam, Julie

2014-01-01

In this article, we argue for the importance of considering participant observation roles in relation to both insider/outsider and overt/covert roles. Through combining key academic debates on participant observation, which have separately considered insider/outsider and overt/covert participant...... observation, we develop a reflexive framework to assist researchers in (1) locating the type of participant observation research; (2) identifying implications of participant observation for both the research and the subjects under study; and (3) reflecting on how one’s role as participant observer shifts over...

[10 theses of the disabled persons' organizations - why participation research with a social perspective is needed].

Science.gov (United States)

Hinz, T

2012-12-01

The 5 professional associations for the disabled and the self-help organisations of disabled people state that in Germany a general concept for "participation research" is needed. This concept should address expectations and processes in developing aid services and improve self-determined participation of people with disabilities according to the human rights postulated in the UN Convention on the Rights of People with Disabilities (2006). A concept of "participation research" will go beyond the objectives and methods of i. e., disability studies - it is a focus in the context of which the social and equal participation of the disabled (especially those with multiple and/or intellectual handicaps) has to be addressed. In this context the 5 professional associations for the disabled have drafted 10 theses which are presented in the following article. © Georg Thieme Verlag KG Stuttgart · New York.

A gender gap in the next generation of physician-scientists: medical student interest and participation in research.

Science.gov (United States)

Guelich, Jill M; Singer, Burton H; Castro, Marcia C; Rosenberg, Leon E

2002-11-01

For 2 decades, the number of physician-scientists has not kept pace with the overall growth of the medical research community. Concomitantly, the number of women entering medical schools has increased markedly. We have explored the effect of the changing gender composition of medical schools on the present and future pipeline of young physician-scientists. We analyzed data obtained from the Association of American Medical Colleges, the National Institutes of Health, and the Howard Hughes Medical Institute pertaining to the expressed research intentions or research participation of male and female medical students in the United States. A statistically significant decline in the percentage of matriculating and graduating medical students--both men and women-who expressed strong research career intentions occurred during the decade between 1987 and 1997. Moreover, matriculating and graduating women were significantly less likely than men to indicate strong research career intentions. Each of these trends has been observed for medical schools overall and for research-intensive ones. Cohort data obtained by tracking individuals from matriculation to graduation revealed that women who expressed strong research career intentions upon matriculation were more likely than men to decrease their research career intentions during medical school. Medical student participation in research supported the gender gap identified by assessing research intentions. Female medical student participation in the Medical Scientist Training Program and the Howard Hughes Medical Institute/National Institutes of Health-sponsored Cloisters Program has increased but lags far behind the growth in the female population in medical schools. Three worrisome trends in the research career intentions and participation of the nation's medical students (a decade-long decline for both men and women, a large and persistent gender gap, and a negative effect of the medical school experience for women) presage a

Concomitant atrial fibrillation surgery for people undergoing cardiac surgery

Science.gov (United States)

Huffman, Mark D; Karmali, Kunal N; Berendsen, Mark A; Andrei, Adin-Cristian; Kruse, Jane; McCarthy, Patrick M; Malaisrie, S C

2016-01-01

-effects model when heterogeneity was high (I2 > 50%). We evaluated the quality of evidence using the Grading of Recommendations Assessment, Development and Evaluation (GRADE) framework to create a ‘Summary of findings’ table. Main results We found 34 reports of 22 trials (1899 participants) with five additional ongoing studies and three studies awaiting classification. All included studies were assessed as having high risk of bias across at least one domain. The effect of concomitant AF surgery on all-cause mortality was uncertain when compared with no concomitant AF surgery (7.0% versus 6.6%, RR 1.14, 95% CI 0.81 to 1.59, I2 = 0%, 20 trials, 1829 participants, low-quality evidence), but the intervention increased freedom from atrial fibrillation, atrial flutter, or atrial tachycardia off antiarrhythmic medications > three months (51.0% versus 24.1%, RR 2.04, 95% CI 1.63 to 2.55, I2 = 0%, eight trials, 649 participants, moderate-quality evidence). The effect of concomitant AF surgery on 30-day mortality was uncertain (2.3% versus 3.1%, RR 1.25 95% CI 0.71 to 2.20, I2 = 0%, 18 trials, 1566 participants, low-quality evidence), but the intervention increased the risk of permanent pacemaker implantation (6.0% versus 4.1%, RR 1.69, 95% CI 1.12 to 2.54, I2 = 0%, 18 trials, 1726 participants, moderate-quality evidence). Investigator-defined adverse events, including but limited to, need for surgical re-exploration or mediastinitis, were not routinely reported but were not different between the two groups (other adverse events: 24.8% versus 23.6%, RR 1.07, 95% CI 0.85 to 1.34, I2 = 45%, nine trials, 858 participants), but the quality of this evidence was very low. Authors’ conclusions For patients with AF undergoing cardiac surgery, there is moderate-quality evidence that concomitant AF surgery approximately doubles the risk of freedom from atrial fibrillation, atrial flutter, or atrial tachycardia off anti-arrhythmic drugs while increasing the risk of permanent pacemaker

Incidental findings are frequent in young healthy individuals undergoing magnetic resonance imaging in brain research imaging studies

DEFF Research Database (Denmark)

Hartwigsen, Gesa; Siebner, Hartwig R; Deuschl, Günther

2010-01-01

There is an ongoing debate about how to handle incidental findings (IF) detected in healthy individuals who participate in research-driven magnetic resonance imaging (MRI) studies. There are currently no established guidelines regarding their management....

Undergoing an immunization is effortlessly, manageable or difficult according to five-year-old children.

Science.gov (United States)

Harder, Maria; Christensson, Kyllike; Söderbäck, Maja

2015-06-01

To prevent diseases among children they regularly undergo immunizations. Previous research show different approaches available to facilitate immunization-procedures for children to protect them from harm. To complement this research and provide care suited for children, research recognizing their perceptions of undergoing such a procedure is needed. The aim of this study was to describe 5-year-old children's perceptions of undergoing an immunization. A phenomenographic approach and analysis was used to describe the children's (n = 21) various perceptions. The data-collection was accomplished directly after the immunization to grasp the children's immediate perceptions. Drawings and reflective talks were used as they are considered as suitable methods when involving young children in research. The right to conduct research with children was approved by the appropriate research ethics committee and also by each child and the parents. The findings show that children's perceptions of an immunization-procedure may vary from effortlessly, to manageable or difficult. Regardless of how the child perceive the immunization-procedure each perception embrace the children's descriptions of actors and articles in the situation, their feelings in the situation and also their actions to deal with the immunization. Nevertheless, these descriptions vary according to how the children perceive the immunization as effortlessly, manageable or difficult. Children's and adults' perceptions of medical procedures may differ and children need guidance, time and space to deal with them. Recognizing children's perceptions of undergoing an immunization contributes to the promotion of their right to be involved in their own health care and towards the development of child-centred care. © 2014 Nordic College of Caring Science.

An evaluation of orthopaedic nurses’ participation in an educational intervention promoting research utilization – A triangulation convergence model

DEFF Research Database (Denmark)

Berthelsen, Connie Bøttcher; Hølge-Hazelton, Bibi

2016-01-01

Aims and objectives To describe the orthopaedic nurses' experiences regarding the relevance of an educational intervention and their personal and contextual barriers to participation in the intervention. Background One of the largest barriers against nurses' research usage in clinical practice...... is the lack of participation. A previous survey identified 32 orthopaedic nurses as interested in participating in nursing research. An educational intervention was conducted to increase the orthopaedic nurses' research knowledge and competencies. However, only an average of six nurses participated. Design...... A triangulation convergence model was applied through a mixed methods design to combine quantitative results and qualitative findings for evaluation. Methods Data were collected from 2013–2014 from 32 orthopaedic nurses in a Danish regional hospital through a newly developed 21-item questionnaire and two focus...

Investigating the Experiences of Childhood Cancer Patients and Parents Participating in Optional Nontherapeutic Clinical Research Studies in the UK.

Science.gov (United States)

Errington, Julie; Malik, Ghada; Evans, Julie; Baston, Jenny; Parry, Annie; Price, Lisa; Johnstone, Hina; Peters, Selena; Oram, Victoria; Howe, Karen; Whiteley, Emma; Tunnacliffe, Jane; Veal, Gareth J

2016-07-01

While the majority of childhood cancer clinical trials are treatment related, additional optional research investigations may be carried out that do not directly impact on treatment. It is essential that these studies are conducted ethically and that the experiences of families participating in these studies are as positive as possible. A questionnaire study was carried out to investigate the key factors that influence why families choose to participate in optional nontherapeutic research studies, the level of understanding of the trials involved, and the experiences of participation. A total of 100 participants from six UK centers were studied; 77 parents, 10 patients >16 years, and 13 patients aged 8-15 years. Ninety-seven percent of parents and 90% of patients felt that information provided prior to study consent was of the right length, with 52% of parents and 65% of patients fully understanding the information provided. Seventy-four percent of parents participated in research studies in order to "do something important", while 74% of patients participated "to help medical staff". Encouragingly, <5% of participants felt that their clinical care would be negatively affected if they did not participate. Positive aspects of participation included a perception of increased attention from medical staff. Negative aspects included spending longer periods in hospital and the requirement for additional blood samples. Ninety-six percent of parents and 87% of patients would participate in future studies. The study provides an insight into the views of childhood cancer patients and their parents participating in nontherapeutic clinical research studies. Overwhelmingly, the findings suggest that participation is seen as a positive experience. © 2016 The Authors. Pediatric Blood & Cancer, published by Wiley Periodicals, Inc.

Implementation of Motivational Interviewing in Substance Use Disorder Treatment: Research Network Participation and Organizational Compatibility.

Science.gov (United States)

Rieckmann, Traci R; Abraham, Amanda J; Bride, Brian E

Despite considerable empirical evidence that psychosocial interventions improve addiction treatment outcomes across populations, implementation remains problematic. A small body of research points to the importance of research network participation as a facilitator of implementation; however, studies examined limited numbers of evidence-based practices. To address this gap, the present study examined factors impacting implementation of motivational interviewing (MI). This study used data from a national sample of privately funded treatment programs (n = 345) and programs participating in the National Drug Abuse Treatment Clinical Trials Network (CTN) (n = 156). Data were collected via face-to-face interviews with program administrators and clinical directors (2007-2009). Analysis included bivariate t tests and chi-square tests to compare private and CTN programs, and multivariable logistic regression of MI implementation. A majority (68.0%) of treatment programs reported use of MI. Treatment programs participating in the CTN (88.9%) were significantly more likely to report use of MI compared with non-CTN programs (58.5%; P Motivational Interviewing Network of Trainers as compared with private programs (56.1%; P tool were more likely to use MI, whereas programs placing greater emphasis on confrontational group therapy were less likely to use MI. Findings suggest the critical role of research network participation, access to psychiatrists, and organizational compatibility in adoption and sustained use of MI.

Research study on public relations and public participation in the nuclear energy field

International Nuclear Information System (INIS)

Gunji, Ikuko; Tabata, Rimiko; Otoshi, Sachio; Kuwagaki, Reiko; Ishibashi, Yoichiro

2006-01-01

The purpose of this research is to clarify the effect of public relations activities in the nuclear energy field and public participation toward the improvement of the risk literacy of nuclear energy. According to the survey results of the actual public relations activities taken by nuclear energy industry, the opportunity for interactive communications between the public and the industry is insufficient. Consequently, we propose building up more opportunities for participation and collaboration of citizens and industries in order to improve interactive communications reflecting public opinions and points of view. (author)

Elucidating the Power in Empowerment and the Participation in Participatory Action Research: A Story About Research Team and Elementary School Change

Science.gov (United States)

Dworski-Riggs, Deanne

2010-01-01

Community psychologists are increasingly using Participatory Action Research (PAR) as a way to promote social justice by creating conditions that foster empowerment. Yet, little attention has been paid to the differences between the power structure that PAR advocates and the local community power structures. This paper seeks to evaluate the level of participation in a PAR project for multiple stakeholder groups, determine how PAR was adjusted to better fit community norms, and whether our research team was able to facilitate the emergence of PAR by adopting an approach that was relevant to the existing power relations. We conclude that power differences should not be seen as roadblocks to participation, but rather as moments of opportunity for the researchers to refine their methods and for the community and the community psychologist to challenge existing power structures. PMID:20232244

Psychological predictors of participation in screening for cognitive impairment among community-dwelling older adults.

Science.gov (United States)

Harada, Kazuhiro; Lee, Sangyoon; Shimada, Hiroyuki; Lee, Sungchul; Bae, Seongryu; Anan, Yuya; Harada, Kenji; Suzuki, Takao

2017-08-01

Detecting cognitive impairment in the earlier stages is important for preventing or delaying dementia. To develop intervention strategies that promote screening for cognitive impairment, it is essential to identify the modifiable predictors for participation in screening. The present study examined whether participation in screening for cognitive impairment was predicted by the constructs of the health belief model, dementia worry and behavioral intentions to undergo screening among older adults. The study used a prospective design. After a baseline questionnaire survey, participation in screening for cognitive impairment was followed for 6 months (n = 10 023). Participation in the screening, constructs of the health belief model (perceived susceptibility to dementia, perceived severity of dementia, perceived benefits of screening, perceived barriers to screening), dementia worry, behavioral intentions and demographic factors were measured. A path analysis showed that the behavioral intention to undergo screening (path coefficient = 0.29) directly predicted participation in screening for cognitive impairment, whereas other psychological and demographic factors did not directly predict participation. The behavioral intention was explained by the perceived benefits of screening (path coefficient = 0.51), perceived barriers to screening (path coefficient = -0.19) and perceived susceptibility to dementia (path coefficient = 0.16). Participation in screening for cognitive impairment was positively predicted by higher behavioral intention to undergo screening. In turn, this behavioral intention was mainly predicted by the perceived benefits of screening among older adults. These findings suggest that emphasizing the perceived benefits and encouraging behavioral intentions might promote participation in screening for cognitive impairment. Geriatr Gerontol Int 2017; 17: 1197-1204. © 2016 Japan Geriatrics Society.

Vulnerable participants in health research

DEFF Research Database (Denmark)

Nordentoft, Helle Merete; Nanna, Kappel

2011-01-01

Ethical guidelines for conducting research are embedded in the Helsinki declaration of 1964. We contend that these abstract and intentionally universal guidelines need to be appropriated for social and health care research in which purpose and methods often deviate from medical research. The guid......Ethical guidelines for conducting research are embedded in the Helsinki declaration of 1964. We contend that these abstract and intentionally universal guidelines need to be appropriated for social and health care research in which purpose and methods often deviate from medical research...... and problems of vulnerable patients and - at the same time - respect their integrity without exposing them unnecessarily? The article illuminates the interactional construction of roles and relationships and how they affect the contextual construction of vulnerability. In this respect we demonstrate...

Why to audit to research ethics committees?

OpenAIRE

Quiroz, Estela; Médica oftalmóloga, docente de ética y metodología de la investigación, Coordinadora de la Red Peruana de Comités de Ética de la Investigación. Hospital Nacional Hipólito Unanue. Lima, Perú.

2010-01-01

Ethics committees in biomedical research have the responsibility to ensure the protection of human participants in the studies. In order to improve the quality of their work they must undergo audit procedures commissioned by the sponsors and inspections done by the regulatory authorities. Through these procedures, improvement of their functions should be guaranteed, so they can optimize their tasks and accomplish in the best way the purpose for which they were created. Los comités de ét...

Public Interest in Medical Research Participation: Does It Matter if Patients or Community Members Have Helped Design the Study?

Science.gov (United States)

Cobb, Enesha M; Gebremariam, Achamyeleh; Singer, Dianne; Davis, Matthew M

2015-10-01

We determined national levels of public participation in medical research study design. We compared public interest in medical research participation (MRP) in studies overall, versus studies explicitly designed with public involvement. Cross-sectional household survey of US population in June 2013. Descriptive statistics estimated participation in medical research study design. Chi-square test compared levels of interest in MRP if respondent knew patients or community members helped design the study. Of 2,048 respondents (participation rate 60%), 5% knew someone who had helped design a medical research study. There was no association between having known someone or personal participation in study design and willingness to engage in MRP. Although the overall proportion of respondents who would consider MRP initially (51%) was similar to the proportion who would consider MRP with community member involvement in study design (49%), the changes in respondents' views across the different scenarios were significantly greater than what would have been expected by chance. We found similar levels of interest in MRP whether or not the public is involved in medical research study design. This finding may indicate that public involvement in study design, like community-based participatory research, may not affect overall rates of MRP. © 2015 Wiley Periodicals, Inc.

Restriction in participation in leisure activities after joint replacement: an exploratory study.

Science.gov (United States)

Wylde, Vikki; Livesey, Christine; Blom, Ashley W

2012-03-01

currently, assessment of outcomes after joint replacement is predominantly centred on impairment and activity limitation (e.g. walking), with little consideration of participation restriction. structured telephone interviews about participation in leisure activities were conducted with 56 total hip replacement (THR) and 60 total knee replacement (TKR) patients before and 1 year after joint replacement. before surgery, THR patients participated in 209 leisure activities, with an average of four leisure activities per person. TKR patients participated in 171 leisure activities, with an average of three leisure activities per person. The leisure activities were coded into four categories: sports/exercise, hobbies, social activities and holidays. Between 89 and 95% of leisure activities were rated as important by THR and TKR patients prior to surgery. Before surgery, THR patients rated 82% of leisure activities as difficult to perform because of joint problems, which decreased to 25% of leisure activities by 1-year after surgery. TKR patients rated 86% of leisure activities as difficult to perform because of joint problems, which decreased to 32% after surgery. this research highlights that participation in leisure activities is important to patients undergoing joint replacement, but that approximately a quarter of patients are unable to perform their valued leisure activities after surgery.

What Affects People's Willingness to Participate in Qualitative Research? An Experimental Comparison of Five Incentives

Science.gov (United States)

Kelly, Bridget; Margolis, Marjorie; McCormack, Lauren; LeBaron, Patricia A.; Chowdhury, Dhuly

2017-01-01

The literature on factors that influence participation in qualitative research is lacking. We conducted an experiment with a nationally representative sample to test the impact of different incentive types and amounts on willingness to participate in a hypothetical qualitative interview. We randomized participants from an online panel to one of…

Researching Lifelong Learning Participation through an Interdisciplinary Lens

Science.gov (United States)

Boeren, Ellen

2017-01-01

This paper explores the interdisciplinary nature of studies in the field of lifelong learning participation. Until recently, participation studies have been presented in a rather fragmented way, often drawing on insights from separate disciplines such as sociology or psychology. The complex nature of lifelong learning participation, however, urges…

A review of the issues and challenges involved in using participant-produced photographs in nursing research.

Science.gov (United States)

Balmer, Claire; Griffiths, Frances; Dunn, Janet

2015-07-01

To discuss the issues and challenges that may occur when using participant-produced photographs in nursing research. The place of visual representation in society is increasingly being recognized and there is a growing discussion on the advantages of implementing visual methods, such as photography, in health and illness research. Integrating photographs has much potential for both nurse researchers and participants but it remains a novel method of gathering qualitative data and many aspects have had little consideration in the nursing and medical literature. This paper presents a discussion of some of the issues that may arise when using photographs as data. It draws on examples of the insights and experiences we had when we asked study participants to produce photographs to complement their interviews designed to explore their experience of living after cancer. Discussion paper This paper is based on our own experiences and supported by literature and theory. Disseminating this research has prompted much interest from nurses and clinical staff. This paper should highlight some of the factors that may need to be addressed before employing such a novel method, thus ensuring the research process is positive and the outcome relevant for all parties. Examples are used here to illustrate practical, ethical and philosophical issues around the research plan, creating and interpreting photographic data, confidentiality and copyright and analysing and disseminating photographs produced for research. © 2015 John Wiley & Sons Ltd.

Research Ethics in the Context of Transition: Gaps in Policies and Programs on the Protection of Research Participants in the Selected Countries of Central and Eastern Europe.

Science.gov (United States)

Famenka, Andrei

2016-12-01

This paper examines the ability of countries in Central and Eastern Europe (CEE) to ensure appropriate protection of research participants in the field of increasingly globalizing biomedical research. By applying an analytical framework for identifying gaps in policies and programs for human subjects protection to four countries of CEE-Belarus, Latvia, Lithuania, and Poland, substantial gaps in the scope and content of relevant policies and major impediments to program performance have been revealed. In these countries, public policies on the protection of research participants lack consistency and reliable mechanisms for their implementation. Impediments to program performance most often relate to inadequacies in the national research ethics systems with regard to organizational structure, budgetary support, supervision, and training. The level of research ethics capacity varies from country to country and depends on socio-economic and political factors of post-communist transition. The breadth and depth of the problems identified suggest that the current level of protection for research participants in CEE might be inadequate to the challenges posed by the globalization of biomedical research. In CEE countries, there is a need for strengthening research ethics capacity through modification of relevant policies and improvement of program management. The differences among the countries call for further research on identifying the best approaches for filling the gaps in the policies and programs aimed at ensuring effective protection of research participants.

Participation in the IAEA Coordinated Research Project Fumex III: Final Report of AREVA NP

International Nuclear Information System (INIS)

2013-01-01

After the Coordinated Research Project (CRP) FUMEXII, participants asked for a new exercise within an IAEA CRP. This CRP started in December 2008 in Vienna with the first Research Coordination Meeting (RCM). The CRP is titled ''Improvement of Computer Codes Used for Fuel Behaviour Simulation FUMEX III''. The object of FUMEX III were the improvement of fuel rod performance codes for modeling high burnup phenomena in modern fuel. This includes transient behavior, as well as mechanical interaction between pellet and cladding and, in progression to the FUMEX II exercise, fission gas release during various conditions (steady state, load follow, transient). AREVA NP agreed on participating in this exercise under the IAEA research agreement no. 15369 and expressed interest in the modeling of pelletclad mechanical interactions as well as fission gas release under steady state and transient conditions. In this exercise AREVA NP used its new global fuel rod code GALILEO, which is still under development (formerly known under the project name COPERNIC 3). During a Consultants Meeting potential topics and a proposed selection of cases have been prepared, which were discussed during the 1st Research Coordination Meeting (RCM) in Vienna in December 2008. During the discussions a number of additional cases motivated by the participants have been identified. Finally, a case table has been agreed upon, which included several cases for the different topics. Most of the cases have been based on the International Fuel Performance Experiments (IFPE) database, but additional cases have been provided during the exercise (e.g., the AREVA idealized case

Effectiveness of paracervical block for pain relief in women undergoing hysterosalpingography

Directory of Open Access Journals (Sweden)

Shikha Jain

2016-01-01

Full Text Available Objectives: To evaluate the potential benefit, in terms of pain relief, of the paracervical block with 2% lignocaine in women undergoing hysterosalpingography (HSG. Study Design: This study was a prospective randomized controlled study. Settings: This study was conducted in infertility clinic of a tertiary care center. Materials and Methods: Four hundred and six patients undergoing HSG as a part of infertility evaluation were included in the study. These women were randomized into two groups: Group I received paracervical block with 2% lignocaine at the time of HSG (n = 53 and Group II (n = 53 served as control. Hyoscine (10 mg oral tablet was given to all the patients 30 min before the procedure. Pain perception during the procedure was analyzed by the patient between 0 and 10 on a numeric rating scale, immediately after HSG. Results: The baseline demographic characteristics of participants in two groups were similar. Mean pain score immediately after HSG in the study group and control group was 4.84 ± 2.56 and 5.21 ± 1.89, respectively (P = 0.21. Conclusions : There is no benefit of paracervical block with 2% lignocaine, in terms of pain relief, in women undergoing HSG.

The demographic characteristics of high-level and recreational athletes undergoing hip arthroscopy for femoroacetabular impingement: a sports-specific analysis.

Science.gov (United States)

Nawabi, Danyal H; Bedi, Asheesh; Tibor, Lisa M; Magennis, Erin; Kelly, Bryan T

2014-03-01

The purpose of this study was to determine differences in age, gender, and the need for bilateral surgery between high-level athletes grouped by sports with similar mechanical demands on the hip and recreational athletes undergoing hip arthroscopy for femoroacetabular impingement (FAI). By use of a hip-preservation center registry, a retrospective review of patients undergoing hip arthroscopy for FAI between March 2010 and April 2012 was performed. Athletes were categorized as high level (high school, collegiate, or professional) or recreational. We performed a subgroup analysis for high-level athletes, looking at differences among contact, cutting, impingement, overhead/asymmetric, endurance, and flexibility sports. The study included 288 high-level athletes and 334 recreational athletes. Being a high-level athlete was associated with a younger age (mean age, 20.2 years v 33.0 years; odds ratio, 0.69; P gender (61.5% v 53.6%; odds ratio, 1.75; P = .03). The percentage of high-level athletes undergoing bilateral surgery was higher than that of recreational athletes (28.4% v 15.9%); however, this association was found to be confounded by age on multivariate analysis. The most common sports for high-level athletes were soccer, hockey, and football. Athletes participating in cutting sports were significantly younger than athletes participating flexibility, contact, or impingement sports. When compared with recreational athletes undergoing arthroscopic treatment for FAI, high-level athletes are more likely to be younger, to be male, and to undergo bilateral surgery. When high-level athletes are grouped by the mechanical demands placed on the hip by their sport, athletes participating in cutting sports are more likely to be younger than those in the other groups. Level IV, case series. Copyright © 2014 Arthroscopy Association of North America. Published by Elsevier Inc. All rights reserved.

Mars Public Mapping Project: Public Participation in Science Research; Providing Opportunities for Kids of All Ages

Science.gov (United States)

Rogers, L. D.; Valderrama Graff, P.; Bandfield, J. L.; Christensen, P. R.; Klug, S. L.; Deva, B.; Capages, C.

2007-12-01

The Mars Public Mapping Project is a web-based education and public outreach tool developed by the Mars Space Flight Facility at Arizona State University. This tool allows the general public to identify and map geologic features on Mars, utilizing Thermal Emission Imaging System (THEMIS) visible images, allowing public participation in authentic scientific research. In addition, participants are able to rate each image (based on a 1 to 5 star scale) to help build a catalog of some of the more appealing and interesting martian surface features. Once participants have identified observable features in an image, they are able to view a map of the global distribution of the many geologic features they just identified. This automatic feedback, through a global distribution map, allows participants to see how their answers compare to the answers of other participants. Participants check boxes "yes, no, or not sure" for each feature that is listed on the Mars Public Mapping Project web page, including surface geologic features such as gullies, sand dunes, dust devil tracks, wind streaks, lava flows, several types of craters, and layers. Each type of feature has a quick and easily accessible description and example image. When a participant moves their mouse over each example thumbnail image, a window pops up with a picture and a description of the feature. This provides a form of "on the job training" for the participants that can vary with their background level. For users who are more comfortable with Mars geology, there is also an advanced feature identification section accessible by a drop down menu. This includes additional features that may be identified, such as streamlined islands, valley networks, chaotic terrain, yardangs, and dark slope streaks. The Mars Public Mapping Project achieves several goals: 1) It engages the public in a manner that encourages active participation in scientific research and learning about geologic features and processes. 2) It helps to

Family-Related Opinions and Stressful Situations Associated with Psychological Distress in Women Undergoing Infertility Treatment

Directory of Open Access Journals (Sweden)

Jiro Takaki

2014-09-01

Full Text Available The purpose of this study is to investigate how family-related opinions and stressful situations are related to psychological distress in women undergoing infertility treatment. The subjects in this cross-sectional study were recruited from female patients undergoing infertility treatment (n = 2540 at 70 infertility treatment institutions in Japan. Because of non-participation or missing data, the number of subjects included in the analysis was 635 (response rate, 25.0%. The family-related opinions and stressful situations were evaluated using the original questions. Psychological distress was assessed using a self-report measure, the Kessler Six-question Psychological Distress Scale (K6. The K6 scores of the following participants were significantly (p < 0.05 and independently high: those with more frequent miscarriage/stillbirth/abortions, those with repeated miscarriages as the cause of infertility, those with infertility of unknown causes, those living with no child, those having a low joint income with their partner, those with the opinion that “women should devote themselves to their household duties” those who had considered stopping treatment, those without the opinion that “married life without children is favorable” and those who had experienced stressful situations such as inadequate explanation by doctors, frustration of multiple failed attempts, differences of opinion with the partner, and lack of knowledge regarding when to stop treatment. Family-related opinions and stressful situations associated with psychological distress in women undergoing infertility treatment are outlined. The results of this study may contribute to the prevention of and care for psychological distress in female patients undergoing infertility treatment.

Broadening participation in Research Experiences for Undergraduates (REU) programs: an evaluation of the team research model for undergraduate research experiences

Science.gov (United States)

Berthelote, A. R.; Geraghty Ward, E. M.; Dalbotten, D. M.

2014-12-01

The REU site on sustainable land and water resources has a goal of broadening participation in the geosciences by underrepresented groups and particularly Native American students. We are evaluating modifications to the traditional REU model in order to better support these students. First, we review a team research model for REU students, where students are placed on teams and work together in peer groups supported by a team of mentors. Second, the REU takes place in locations that have high populations of Native American students to remove barriers to participation for non-traditional students. Finally, the teams do research on issues related to local concerns with cultural focus. Traditional REU models (1 faculty to 1 student/on campus) have been shown to be effective in supporting student movement into graduate programs but often fail to attract a diverse group of candidates. In addition, they rely for success on the relationship between faculty and student, which can often be undermined by unrealistic expectations on the part of the student about the mentor relationship, and can be exacerbated by cultural misunderstanding, conflicting discourse, or students' personal or family issues. At this REU site, peer mentorship and support plays a large role. Students work together to select their research question, follow the project to completion and present the results. Students from both native and non-native backgrounds learn about the culture of the partner reservations and work on a project that is of immediate local concern. The REU also teaches students protocols for working on Native American lands that support good relations between reservation and University. Analysis of participant data gathered from surveys and interview over the course of our 3-year program indicates that the team approach is successful. Students noted that collaborating with other teams was rewarding and mentors reported positively about their roles in providing guidance for the student

'Relief of oppression': an organizing principle for researchers' obligations to participants in observational studies in the developing world.

Science.gov (United States)

Lavery, James V; Bandewar, Sunita V S; Kimani, Joshua; Upshur, Ross E G; Plummer, Frances A; Singer, Peter A

2010-06-30

A central question in the debate about exploitation in international research is whether investigators and sponsors from high-income countries (HIC) have obligations to address background conditions of injustice in the communities in which they conduct their research, beyond the healthcare and other research-related needs of participants, to aspects of their basic life circumstances. In this paper, we describe the Majengo sexually transmitted disease (STD) Cohort study, a long-term prospective, observational cohort of sex workers in Nairobi, Kenya. Despite important scientific contributions and a wide range of benefits to the women of the cohort, most of the women have remained in the sex trade during their long-standing participation in the cohort, prompting allegations of exploitation. The Majengo STD cohort case extends the debate about justice in international research ethics beyond clinical trials into long-term observational research. We sketch the basic features of a new approach to understanding and operationalizing obligations of observational researchers, which we call 'relief of oppression'. 'Relief of oppression' is an organizing principle, analogous to the principle of harm reduction that is now widely applied in public health practice. Relief of oppression aims to help observational researchers working in conditions of injustice and deprivation to clarify their ethical obligations to participants. It aims to bridge the gap between a narrow, transaction-oriented account of avoiding exploitation and a broad account emphasizing obligations of reparation for historic injustices. We propose that relief of oppression might focus researchers' consideration of benefits on those that have some relevance to background conditions of injustice, and so elevate the priority of these benefits, in relation to others that might be considered and negotiated with participants, according to the degree to which the participating communities are constrained in their

Experiences of undergoing Internet-based cognitive behavior therapy for procrastination: A qualitative study

Directory of Open Access Journals (Sweden)

Alexander Rozental

2015-09-01

Full Text Available Internet interventions constitute a promising and cost-effective treatment alternative for a wide range of psychiatric disorders and somatic conditions. Several clinical trials have provided evidence for its efficacy and effectiveness, and recent research also indicate that it can be helpful in the treatment of conditions that are debilitating, but do not necessarily warrant more immediate care, for instance, procrastination, a self-regulatory failure that is associated with decreased well-being and mental health. However, providing treatment interventions for procrastination via the Internet is a novel approach, making it unclear how the participants themselves perceive their experiences. The current study thus investigated participants' own apprehension of undergoing Internet-based cognitive behavior therapy for procrastination by distributing open-ended questions at the post-treatment assessment, for instance, “What did you think about the readability of the texts”, “How valuable do you believe that this treatment has been for you?”, and “The thing that I am most displeased with (and how it could be improved is …”. In total, 75 participants (50% responded, and the material was examined using thematic analysis. The results indicate that there exist both positive and negative aspects of the treatment program. Many participants increased their self-efficacy and were able to gain momentum on many tasks and assignments that had been deferred in their everyday life. Meanwhile, several participants lacked motivation to complete the exercises, had too many conflicting commitments, and were unable to keep up with the tight treatment schedule. Hence, the results suggest that Internet interventions for procrastination could profit from individual tailoring, shorter and more manageable modules, and that the content need to be adapted to the reading comprehension and motivational level of the participant.

Comparative Research of Residents’ Effect Perception and Participation Capacity and Willingness on Pro-poor Tourism

Institute of Scientific and Technical Information of China (English)

Guoqing; HUANG; Hong; SHU

2014-01-01

In this article,comparative research on residents’ effect perception,participation capacity and willingness on Pro-poor Tourism( PPT) is given based on the questionnaire carried out in Wulong County and Fengjie County in Three Gorges Area,Chongqing,China. Some technologies,such as SPSS 13. 0,ANOVA and T-test are applied to analyze the data and results show Wulong residents’ perception behavior is better than that of Fengjie residents. Moreover,the residents with different demographic characteristics have different participation behavior.Finally,multiple regression analysis is applied to identify the key factors influencing residents’ perception behavior,that is participation willingness and positive economic effect perception,positive social and cultural effect perception and participation capacity.

The participation of minors in preventive HIV research trials in South Africa: legal and human rights considerations.

Science.gov (United States)

van Wyk, Christa

2003-01-01

The constitutional prohibition of experimentation/research without the individual subject's (own) consent is investigated. A distinction is drawn between therapeutic and non-therapeutic research. A minor of 14 is competent to consent independently to medical treatment (which would include therapeutic research), but not to non-therapeutic research. A minor must be at least 18 years to be able to do so. Proxy consent can be secured for the participation of minors under 18 in non-therapeutic research only if they assent, if their participation in the research is indispensable and the research carries no more than negligible risk. Since the risks inherent in HIV preventive vaccine trials may carry more than negligible risk, these trials may not be carried out on children under 18. The limitation of rights and the consideration of foreign and international law in the interpretation of the South African Bill of Rights are investigated.

Urine Creatinine Concentrations in Drug Monitoring Participants and Hospitalized Patients.

Science.gov (United States)

Love, Sara A; Seegmiller, Jesse C; Kloss, Julie; Apple, Fred S

2016-10-01

Urine drug testing is commonly performed in both clinical and forensic arenas for screening, monitoring and compliance purposes. We sought to determine if urine creatinine concentrations in monitoring program participants were significantly different from hospital in-patients and out-patients undergoing urine drug testing. We retrospectively reviewed urine creatinine submitted in June through December 2015 for all specimens undergoing urine drug testing. The 20,479 creatinine results were categorized as hospitalized patients (H) and monitoring/compliance groups for pain management (P), legal (L) or recovery (R). Median creatinine concentrations (interquartile range, mg/dL) were significantly different (P creatinine concentrations were significantly lower in the R vs. L group (Pcreatinine concentration and may indicate participants' attempts to tamper with their drug test results through dilution means. © The Author 2016. Published by Oxford University Press. All rights reserved. For Permissions, please email: journals.permissions@oup.com.

Exercise, physiological function, and the selection of participants for aging research.

Science.gov (United States)

Lazarus, Norman R; Harridge, Stephen D R

2010-08-01

Regular and vigorous exercisers appear to be the logical choice for studying the inherent aging process as they are essentially free from the complications of disuse. Cross-sectional studies of aging tend to depict an essentially smooth and progressive decrement of physiological function with increasing chronological age. On closer examination of such data, it is seen that although the young have high functional values and the very old low, between these limits, values are widely scattered. We have reevaluated published data from a meta-analysis of 242 studies on men and from a similar study on women. From both data sets, where VO2max was plotted against chronological age, we stratified the VO2max values into bandwidth intervals of 5 ml/kg/minute and then allocated data points to their respective bandwidth irrespective of chronological age. When replotted into bandwidths of functional equivalence, these data show that at the extremes of function, the young are separated from the old. Between these values, each functional bandwidth accommodates a wide age range. The decrement in function with chronological age is not smooth or well defined. We suggest that participants for research into healthy aging should be initially segregated into bands of functionally equivalent VO2max values irrespective of their chronological age. Subsequently, other physiological measurements should be made on every participant in the band in order to begin to define the physiological profile of the participants. By conducting longitudinal studies on every individual, it will be possible to chart the physiological history of each participant through various ages. Segregating participants into cohorts of functional equivalence with data handling blinded to chronological age may be of great utility in increasing our understanding of the inherent aging process.

Psychological, behavioral and social effects of disclosing Alzheimer's disease biomarkers to research participants: a systematic review

NARCIS (Netherlands)

Bemelmans, S.A.S.A.; K. Tromp (Krista); E.M. Bunnik (Eline); Milne, R.J.; Badger, S.; C. Brayne (Carol); M.H.N. Schermer (Maartje); Richard, E.

2016-01-01

textabstractBackground: Current Alzheimer's disease (AD) research initiatives focus on cognitively healthy individuals with biomarkers that are associated with the development of AD. It is unclear whether biomarker results should be returned to research participants and what the psychological,

Psychological, behavioral and social effects of disclosing Alzheimer's disease biomarkers to research participants : A systematic review

NARCIS (Netherlands)

Bemelmans, S.A.; K. Tromp (Krista); E.M. Bunnik (Eline); Milne, R.J.; Badger, S.; C. Brayne (Carol); M.H.N. Schermer (Maartje); E. Richard (Edo)

2016-01-01

markdownabstractBACKGROUND: Current Alzheimer's disease (AD) research initiatives focus on cognitively healthy individuals with biomarkers that are associated with the development of AD. It is unclear whether biomarker results should be returned to research participants and what the psychological,

Memory in pediatric patients undergoing conscious sedation for aversive medical procedures.

Science.gov (United States)

Pringle, Beverly; Dahlquist, Lynnda M; Eskenazi, Allen

2003-05-01

This study investigated preserved memory in 26 pediatric cancer patients (65% boys, 77% Caucasian, mean age = 12.5 years) undergoing midazolam-induced conscious sedation during painful medical procedures to treat hematological or oncological diseases. The sedative midazolam had a significant anterograde amnesic effect on participants' performance on a visual recognition (explicit) memory task but not on a visual perceptual facilitation (implicit) memory task. That implicit memory scores were relatively unaffected while explicit memory scores deteriorated significantly indicates that leaning occurred while participants were sedated, even when participants did not recollect the learning event. These findings, which replicate those of M. R. Polster, R. A. McCarthy, G. O'Sullivan, P. A. Gray, and G. R. Park (1993) in a study of adults, have implications for the development and treatment of conditioned anxiety reactions associated with aversive medical procedures.

Psychological, behavioral and social effects of disclosing Alzheimer's disease biomarkers to research participants: a systematic review

NARCIS (Netherlands)

Bemelmans, S.AS.A.; Tromp, K.; Bunnik, E.M.; Milne, R.J.; Badger, S.; Brayne, C.; Schermer, M.H.; Richard, E.

2016-01-01

BACKGROUND: Current Alzheimer's disease (AD) research initiatives focus on cognitively healthy individuals with biomarkers that are associated with the development of AD. It is unclear whether biomarker results should be returned to research participants and what the psychological, behavioral and

Crocodile years: the traditional image of science and physical scientists' participation in weapons research

Energy Technology Data Exchange (ETDEWEB)

Crews, R.J.

1985-01-01

This thesis examines one dimension of the relationship between science and the arms race. More specifically, it develops and empirically examines a theoretical model of the relationship between the social demand for defense-related and weapons research, traditional scientific values related to the worldview of classical physics, and differential participation by physical scientists in such research. The theoretical model suggests that an antiquated traditional image of science exists, and that it may explain, in part, participation by physical scientists in defense-related or weapons research. Two major hypotheses are suggested by the model: first, that a constellation of values representing a traditional image of science obtains today among young physical scientists; and second, that those who currently engage (or are willing to engage) in defense-related or weapons research are more likely to agree with the values implicit in the traditional image of science than those who do not (or would not) engage in such research. The theoretical model is located within the sociologies of knowledge and science. This study includes chapters that provide an overview of the literature of these subdisciplines. This investigation concludes with an empirical examination of the model and hypotheses.

The regulation of informed consent to participation in clinical research by mentally ill persons: An overview

Directory of Open Access Journals (Sweden)

A Nienaber

2010-12-01

Full Text Available The article examines the legal requirements relating to the informed consent of mentally ill persons to participation in clinical research in South Africa. First, the juridical basis of informed consent in South African law is outlined; and second, the requirements for lawful consent developed in South African common law and case law are presented. Finally, the article deliberates upon the requirements for the participation of mentally ill persons in research as laid down by the Mental Health Care Act and its regulations, the National Health Act and its (draft regulations, and the South African Constitution.

A Review of Barriers to Minorities' Participation in Cancer Clinical Trials: Implications for Future Cancer Research.

Science.gov (United States)

Salman, Ali; Nguyen, Claire; Lee, Yi-Hui; Cooksey-James, Tawna

2016-04-01

To enhance nurses' awareness and competencies in practice and research by reporting the common barriers to participation of minorities in cancer clinical trials and discussing facilitators and useful strategies for recruitment. Several databases were searched for articles published in peer reviewed journals. Some of the barriers to minorities' participation in clinical trials were identified within the cultural social-context of cancer patients. The involvement of community networking was suggested as the most effective strategy for the recruitment of minorities in cancer clinical trials. Using culturally sensitive approaches to enhance ethnic minorities' participation is important for advancing cancer care and eliminating health disparities. Awareness of barriers and potential facilitators to the enrollment of ethnic minority cancer patients may contribute to enhancing nurses' competencies of recruiting ethnic minorities in nursing research, playing efficient roles in cancer clinical trials team, and providing culturally competent quality care.

Towards a Creative Synthesis of Participant Observation and Participatory Research: Reflections on Doing Research "with" and "on" Young Bhutanese Refugees in Nepal

Science.gov (United States)

Evans, Rosalind

2013-01-01

This article responds to Wright and Nelson's (1995) call for a "creative synthesis" of participant observation and participatory research, which may allow the limitations of both methods to be addressed. It does so by reflecting on the experience of doing long-term research both with and on young Bhutanese refugees in Nepal. Although…

Recruitment and Participation of Recreational Runners in a Large Epidemiological and Genetic Research Study: Retrospective Data Analysis.

Science.gov (United States)

Manzanero, Silvia; Kozlovskaia, Maria; Vlahovich, Nicole; Hughes, David C

2018-05-23

With the increasing capacity for remote collection of both data and samples for medical research, a thorough assessment is needed to determine the association of population characteristics and recruitment methodologies with response rates. The aim of this research was to assess population representativeness in a two-stage study of health and injury in recreational runners, which consisted of an epidemiological arm and genetic analysis. The cost and success of various classical and internet-based methods were analyzed, and demographic representativeness was assessed for recruitment to the epidemiological survey, reported willingness to participate in the genetic arm of the study, actual participation, sample return, and approval for biobank storage. A total of 4965 valid responses were received, of which 1664 were deemed eligible for genetic analysis. Younger age showed a negative association with initial recruitment rate, expressed willingness to participate in genetic analysis, and actual participation. Additionally, female sex was associated with higher initial recruitment rates, and ethnic origin impacted willingness to participate in the genetic analysis (all P<.001). The sharp decline in retention through the different stages of the study in young respondents suggests the necessity to develop specific recruitment and retention strategies when investigating a young, physically active population. ©Silvia Manzanero, Maria Kozlovskaia, Nicole Vlahovich, David C Hughes. Originally published in JMIR Research Protocols (http://www.researchprotocols.org), 23.05.2018.

Consensus standards for introductory e-learning courses in human participants research ethics.

Science.gov (United States)

Williams, John R; Sprumont, Dominique; Hirtle, Marie; Adebamowo, Clement; Braunschweiger, Paul; Bull, Susan; Burri, Christian; Czarkowski, Marek; Fan, Chien Te; Franck, Caroline; Gefenas, Eugenjius; Geissbuhler, Antoine; Klingmann, Ingrid; Kouyaté, Bocar; Kraehenbhul, Jean-Pierre; Kruger, Mariana; Moodley, Keymanthri; Ntoumi, Francine; Nyirenda, Thomas; Pym, Alexander; Silverman, Henry; Tenorio, Sara

2014-06-01

This paper reports the results of a workshop held in January 2013 to begin the process of establishing standards for e-learning programmes in the ethics of research involving human participants that could serve as the basis of their evaluation by individuals and groups who want to use, recommend or accredit such programmes. The standards that were drafted at the workshop cover the following topics: designer/provider qualifications, learning goals, learning objectives, content, methods, assessment of participants and assessment of the course. The authors invite comments on the draft standards and eventual endorsement of a final version by all stakeholders. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.

The participation of IPEN in the IAEA coordinated research projects on accelerators driven systems (ADS)

Energy Technology Data Exchange (ETDEWEB)

Maiorino, J.R.; Santos, A.; Carluccio, T.; Rossi, P.C.R.; Antunes, A.; Oliveira, F. de; Lee, S.M. [Instituto de Pesquisas Energeticas e Nucleares (IPEN/CNEN-SP), Sao Paulo, SP (Brazil)]. E-mail: maiorino@ipen.br

2007-07-01

This paper describes the participation of the IPEN in the International Atomic Energy Agency (IAEA) Coordinated Research Projects(CRP) on Analytical and Experimental Benchmark Analysis on ADS and Low Enriched Uranium Fuel Utilization in ADS. The first CRP has as specific objective to improve the present understanding of the coupling of an external neutron source [e.g. a spallation source in the case of the accelerator driven system (ADS)] with a multiplicative sub-critical core, and the second CRP, or collaborative work, the utilization of LEU in existing or planned ADS facilities. IPEN participate in both CRP through a research contract (13388), and although there are several benchmarks defined in both CRP, presently IPEN is participating in the activities related with reactor physics benchmark of the Yalina Booster facility in Belarus, in the analytical and numerical benchmarking of methods and codes for ADS kinetics, and in the ADS target calculations. Besides, since there are plans to introduce a compact neutron generator in a sub critical core of the IPEN-MB-01 facility, a benchmark of a simulation of such project has been proposed in the LEU-ADS CRP. The paper will review the CRPs with details on the activities in which IPEN is participating. (author)

The participation of IPEN in the IAEA coordinated research projects on accelerators driven systems (ADS)

International Nuclear Information System (INIS)

Maiorino, J.R.; Santos, A.; Carluccio, T.; Rossi, P.C.R.; Antunes, A.; Oliveira, F. de; Lee, S.M.

2007-01-01

This paper describes the participation of the IPEN in the International Atomic Energy Agency (IAEA) Coordinated Research Projects(CRP) on Analytical and Experimental Benchmark Analysis on ADS and Low Enriched Uranium Fuel Utilization in ADS. The first CRP has as specific objective to improve the present understanding of the coupling of an external neutron source [e.g. a spallation source in the case of the accelerator driven system (ADS)] with a multiplicative sub-critical core, and the second CRP, or collaborative work, the utilization of LEU in existing or planned ADS facilities. IPEN participate in both CRP through a research contract (13388), and although there are several benchmarks defined in both CRP, presently IPEN is participating in the activities related with reactor physics benchmark of the Yalina Booster facility in Belarus, in the analytical and numerical benchmarking of methods and codes for ADS kinetics, and in the ADS target calculations. Besides, since there are plans to introduce a compact neutron generator in a sub critical core of the IPEN-MB-01 facility, a benchmark of a simulation of such project has been proposed in the LEU-ADS CRP. The paper will review the CRPs with details on the activities in which IPEN is participating. (author)

Recommendations for the Return of Research Results to Study Participants and Guardians: A Report From the Children's Oncology Group

Science.gov (United States)

Fernandez, Conrad V.; Ruccione, Kathleen; Wells, Robert J.; Long, Jay B.; Pelletier, Wendy; Hooke, Mary C.; Pentz, Rebecca D.; Noll, Robert B.; Baker, Justin N.; O'Leary, Maura; Reaman, Gregory; Adamson, Peter C.; Joffe, Steven

2012-01-01

Purpose The Children's Oncology Group (COG) strongly supports the widely recognized principle that research participants should be offered a summary of study results. The mechanism by which to do so in a cooperative research group setting has not been previously described. Methods On the basis of a review of the available empirical and theoretic literature and on iterative, multidisciplinary discussion, a COG Return of Results Task Force (RRTF) offered detailed recommendations for the return of results to research study participants. Results The RRTF established guidelines for the notification of research participants and/or their parents/guardians about the availability of research results, a mechanism for and timing of sharing results via registration on the COG public Web site, the scope of the research to be shared, the target audience, and a process for creating and vetting lay summaries of study results. The RRTF recognized the challenges in adequately conveying complex scientific results to audiences with varying levels of health literacy and recommended that particularly sensitive or complex results be returned using direct personal contact. The RRTF also recommended evaluation of the cost, effectiveness, and impact of sharing results. Conclusion These recommendations provide a framework for the offering and returning of results to participants. They can be used by individual investigators, multi-investigator research collaboratives, and large cooperative groups. PMID:23109703

Themes and situations that cause embarrassment among participants in research in which questionnaires or interviews are used

Directory of Open Access Journals (Sweden)

Juliana Dias Reis Pessalacia

2013-03-01

Full Text Available Objective. To recognize the themes and situations that could make research participants feel embarrassed when questionnaires or interviews are used. Methodology. Quantitative and descriptive study, developed in 2008, involving a stratified sample of 1,1149 subjects who qualified the degree of shame in view of potentially embarrassing themes and situations. Results. For the research participants, it is embarrassing to answer questions related to the following themes: betrayal (50%, physical violence (42%, sexual harassment (42%, psychological violence (40% and death of loved ones (38%. The situations that most frequently causes embarrassment were: start of the survey or interview without requesting informed consent (83%; lack of information about the type of questions that would be addressed (79%, lack of guaranteed anonymity (78%, or use of images (66% or a recorder (58%. Conclusion. Themes and situations were identified that caused embarrassment among participants in research in which questionnaires or interviews were used, which should be considered in the ethical evaluation of studies.

Music and ambient operating room noise in patients undergoing spinal anesthesia.

Science.gov (United States)

Ayoub, Chakib M; Rizk, Laudi B; Yaacoub, Chadi I; Gaal, Dorothy; Kain, Zeev N

2005-05-01

Previous studies have indicated that music decreases intraoperative sedative requirements in patients undergoing surgical procedures under regional anesthesia. In this study we sought to determine whether this decrease in sedative requirements results from music or from eliminating operating room (OR) noise. A secondary aim of the study was to examine the relationship of response to intraoperative music and participants' culture (i.e., American versus Lebanese). Eighty adults (36 American and 54 Lebanese) undergoing urological procedures with spinal anesthesia and patient-controlled IV propofol sedation were randomly assigned to intraoperative music, white noise, or OR noise. We found that, controlling for ambient OR noise, intraoperative music decreases propofol requirements (0.004 +/- 0.002 mg . kg(-1) . min(-1) versus 0.014 +/- 0.004 mg . kg(-1) . min(-1) versus 0.012 +/- 0.002 mg . kg(-1) . min(-1); P = 0.026). We also found that, regardless of group assignment, Lebanese patients used less propofol as compared with American patients (0.005 +/- 0.001 mg . kg(-1) . min(-1) versus 0.017 +/- 0.003 mg . kg(-1) . min(-1); P = 0.001) and that, in both sites, patients in the music group required less propofol (P noise, intraoperative music decreases propofol requirements of both Lebanese and American patients who undergo urological surgery under spinal anesthesia.

Giving voice to study volunteers: comparing views of mentally ill, physically ill, and healthy protocol participants on ethical aspects of clinical research.

Science.gov (United States)

Roberts, Laura Weiss; Kim, Jane Paik

2014-09-01

Ethical controversy surrounds clinical research involving seriously ill participants. While many stakeholders have opinions, the extent to which protocol volunteers themselves see human research as ethically acceptable has not been documented. To address this gap of knowledge, authors sought to assess views of healthy and ill clinical research volunteers regarding the ethical acceptability of human studies involving individuals who are ill or are potentially vulnerable. Surveys and semi-structured interviews were used to query clinical research protocol participants and a comparison group of healthy individuals. A total of 179 respondents participated in this study: 150 in protocols (60 mentally ill, 43 physically ill, and 47 healthy clinical research protocol participants) and 29 healthy individuals not enrolled in protocols. Main outcome measures included responses regarding ethical acceptability of clinical research when it presents significant burdens and risks, involves people with serious mental and physical illness, or enrolls people with other potential vulnerabilities in the research situation. Respondents expressed decreasing levels of acceptance of participation in research that posed burdens of increasing severity. Participation in protocols with possibly life-threatening consequences was perceived as least acceptable (mean = 1.82, sd = 1.29). Research on serious illnesses, including HIV, cancer, schizophrenia, depression, and post-traumatic stress disorder, was seen as ethically acceptable across respondent groups (range of means = [4.0, 4.7]). Mentally ill volunteers expressed levels of ethical acceptability for physical illness research and mental illness research as acceptable and similar, while physically ill volunteers expressed greater ethical acceptability for physical illness research than for mental illness research. Mentally ill, physically ill, and healthy participants expressed neutral to favorable perspectives regarding the ethical

Craigslist versus print newspaper advertising for recruiting research participants for alcohol studies: Cost and participant characteristics.

Science.gov (United States)

Gioia, Christopher J; Sobell, Linda Carter; Sobell, Mark B; Agrawal, Sangeeta

2016-03-01

Technology has transformed our lifestyles in dramatic and significant ways, including new and less expensive options for recruiting study participants. This study examines cost and participant differences between two recruitment sources, Craigslist (CL), and print newspapers (PNs). This paper also reviewed and compared studies involving clinical trials published since 2010 that recruited participants using CL alone or in combination with other methods. Secondary data analyses from a parent study involving a randomized controlled trial of a mail-based intervention to promote self-change with problem drinkers. Significant differences were found between CL and PN participants on most demographic and pretreatment drinking variables. While all participants had AUDIT scores suggestive of an alcohol problem and reported drinking at high-risk levels, CL participants had less severe drinking problem histories, were considerably younger, and had a higher socioeconomic status than PN participants. The total advertising costs for the 65 CL ads ($275) were significantly less than the 69 PN ads ($33, 311). The recruiting cost per eligible participant was vastly less expensive using CL ($1.46) compared to print newspaper ads ($116.88). Using CL is a viable recruitment method for soliciting participants, particularly those that are younger, for alcohol intervention studies. It is also less expensive than newspaper ads. When CL participants were recruited, they reported being slightly more confident to change their drinking than PN participants. Limitations of using CL are discussed, including that some initial ad responders gave inconsistent answers to similar questions and a few tried to enter the study more than once. Copyright © 2015 Elsevier Ltd. All rights reserved.

[The use of interviews in participative intervention and research: the GAM tool as a collective interview].

Science.gov (United States)

Sade, Christian; de Barros, Leticia Maria Renault; Melo, Jorge José Maciel; Passos, Eduardo

2013-10-01

This paper seeks to assess a way of conducting interviews in line with the ideology of Brazilian Psychiatric Reform. In the methodology of participative intervention and research in mental health, the interview is less a data collection than a data harvesting procedure. It is designed to apply the principles of psychosocial care, autonomy as the basis for treatment, the predominance of the users and of their social networks and civic participation. Inspired by the Explicitation Interview technique, the contention is that the handling of the interview presupposes an open attitude able to promote and embrace different viewpoints. This attitude makes the interview a collective experience of sharing and belonging, allowing participants to reposition themselves subjectively in treatment with the emergence of groupality. As an example of using the interview as a methodological tool in mental health research, we examine research into adaptation of the tool of Autonomous Medication Management (GAM). It is an interventionist approach guided by principles that foster autonomy and the protagonist status of users of psychotropic medication, their quality of life, their rights and recognition of the multiple significances of medication, understood here as a collective interview technique.

Combining value of information analysis and ethical argumentation in decisions on participation of vulnerable patients in clinical research.

Science.gov (United States)

van der Wilt, Gert J; Grutters, Janneke P C; Maas, Angela H E M; Rolden, Herbert J A

2018-02-05

The participation of vulnerable patients in clinical research poses apparent ethical dilemmas. Depending on the nature of the vulnerability, their participation may challenge the ethical principles of autonomy, non-maleficence, or justice. On the other hand, non-participation may preclude the building of a knowledge base that is a prerequisite for defining the optimal clinical management of vulnerable patients. Such clinical uncertainty may also incur substantial economic costs. We present the participation of pre-menopausal women with atrial fibrillation in trials of novel oral anticoagulant drugs as a case study. Due to their non-participation in pivotal trials, it is uncertain whether for them, the risks that are associated with these drugs are outweighed by the advantages compared with conventional treatment. We addressed the question whether research of this new class of drugs in this subgroup would be appropriate from both, an ethical as well an economic perspective. We used the method of specifying norms as a wider framework to resolve the apparent ethical dilemma, while incorporating the question whether research of oral anticoagulants in premenopausal women with atrial fibrillation can be justified on economic grounds. For the latter, the results of a value-of-information analysis were used. Further clinical research on NOACs in premenopausal women with atrial fibrillation can be justified on both, ethical and economic grounds. Addressing apparent ethical dilemmas by invoking a method such as specifying norms can improve the quality of public practical reasoning. As such, the method should also prove valuable to committees that have formally been granted the authority to review trial protocols and proposals for scientific research.

Using perceptual mapping methods to understand gender differences in perceived barriers and benefits of clinical research participation in urban minority HIV+ patients.

Science.gov (United States)

Bass, Sarah Bauerle; Wolak, Caitlin; Greener, Judith; Tedaldi, Ellen; Nanavati, Aasit; Ruppert, Katey; Gordon, Thomas F

2016-01-01

Minority participation in HIV clinical trials research is critical to understanding the impact of medications or behavioral interventions, but little is known about gender differences in perceptions of participation. We surveyed 50 minority HIV+ patients from an urban clinic to assess perceived risks/benefits of clinical trial research participation and used innovative marketing methods to analyze results. Perceptual mapping and vector message-modeling, a method that creates 3-D models representing how groups conceptualize elements, were used to assess how male and female participants could be motivated to participate. Results showed men farther away from participation and more concerned with HIV disclosure and experimentation than women. Men expressed distrust of the medical system, doubted HIV's origin, and knew less about research implementation. Women were closer to participation in both behavior and medical trials and perceived medication issues as more significant, including fear of losing medication stability, medications not working, being in the placebo group, and experiencing side effects. Vector modeling shows that messages would need to focus on different aspects of clinical research for men and women and that interventions aimed at minority HIV+ patients to encourage clinical trial participation would need to be targeted to their unique perceptions. Understanding gender perceptions of HIV clinical research has significant implications for targeting messages to increase minority participation.

Alternatives, and adjuncts, to prophylactic platelet transfusion for people with haematological malignancies undergoing intensive chemotherapy or stem cell transplantation

Science.gov (United States)

Desborough, Michael; Estcourt, Lise J; Doree, Carolyn; Trivella, Marialena; Hopewell, Sally; Stanworth, Simon J; Murphy, Michael F

2016-01-01

not yet been published (trial completion dates: April 2012 to February 2017). Therefore, the review included 10 trials in eight references with 554 participants. Six trials (336 participants) only included participants with acute myeloid leukaemia undergoing intensive chemotherapy, two trials (38 participants) included participants with lymphoma undergoing intensive chemotherapy and two trials (180 participants) reported participants undergoing allogeneic stem cell transplantation. Men and women were equally well represented in the trials. The age range of participants included in the trials was from 16 years to 81 years. All trials took place in high-income countries. The manufacturers of the agent sponsored eight trials that were under investigation, and two trials did not report their source of funding. No trials assessed artificial platelet substitutes, fibrinogen concentrate, recombinant activated factor VII or desmopressin. Nine trials compared a TPO mimetic to placebo or standard care; seven of these used pegylated recombinant human megakaryocyte growth and differentiation factor (PEG-rHuMGDF) and two used recombinant human thrombopoietin (rhTPO). One trial compared platelet-poor plasma to platelet transfusion. We considered that all the trials included in this review were at high risk of bias and meta-analysis was not possible in seven trials due to problems with the way data were reported. We are very uncertain whether TPO mimetics reduce the number of participants with any bleeding episode (odds ratio (OR) 0.40, 95% confidence interval (CI) 0.10 to 1.62, one trial, 120 participants, very low quality evidence). We are very uncertain whether TPO mimetics reduce the risk of a life-threatening bleed after 30 days (OR 1.46, 95% CI 0.06 to 33.14, three trials, 209 participants, very low quality evidence); or after 90 days (OR 1.00, 95% CI 0.06 to 16.37, one trial, 120 participants, very low quality evidence). We are very uncertain whether TPO mimetics reduce

MEASURING COERCION TO PARTICIPATE IN RESEARCH WITHIN A DOUBLY VULNERABLE POPULATION: INITIAL DEVELOPMENT OF THE COERCION ASSESSMENT SCALE

Science.gov (United States)

Dugosh, Karen Leggett; Festinger, David S.; Croft, Jason R.; Marlowe, Douglas B.

2011-01-01

Despite many efforts aimed to ensure that research participation is autonomous and not coerced, there exists no reliable and valid measure of perceived coercion for the doubly vulnerable population of substance-abusing offenders. The current study describes the development and initial validation of an instrument measuring perceived coercion to participate in research among substance-abusing offenders. The results indicated that a substantial number of individuals report feeling coerced to participate in the study. In addition, the instrument has adequate levels of internal consistency, a one-dimensional factor structure, and evidence of discriminative validity. This study provides initial support for the instrument’s validity and clinical utility. PMID:20235867

Use of community engagement strategies to increase research participation in practice-based research networks (PBRNs).

Science.gov (United States)

Spears, William; Tsoh, Janice Y; Potter, Michael B; Weller, Nancy; Brown, Anthony E; Campbell-Voytal, Kimberly; Getrich, Christina M; Sussman, Andrew L; Pascoe, John; Neale, Anne Victoria

2014-01-01

Practice-based research networks (PBRNs) are increasingly encouraged to use community engagement approaches. The extent to which PBRNs engage clinic and community partners in strategies to recruit and retain participants from their local communities (specifically racial/ethnic communities) is the focus of this study. The design was a cross-sectional survey of PBRN directors in the United States. Survey respondents indicated whether their research network planned for, implemented, and has capacity for activities that engage clinic and community partners in 7 recommended strategies organized into study phases, called the cycle of trust. The objectives of the national survey were to (1) describe the extent to which PBRNs across the United States routinely implement the strategies recommended for recruiting diverse patient groups and (2) identify factors associated with implementing the recommended strategies. The survey response rate was 63%. Activities that build trust often are used more with clinic partners than with community partners. PBRNs that adopt engagement strategies when working with clinic and community partners have less difficulty in recruiting diverse populations. Multivariate analysis showed that the targeting racial/ethnic communities for study recruitment, Clinical and Translational Science Award affiliation, and planning to use community engagement strategies were independent correlates of PBRN implementation of the recommended strategies. PBRNs that successfully engage racial/ethnic communities as research partners use community engagement strategies. New commitments are needed to support PBRN researchers in developing relationships with the communities in which their patients live. Stable PBRN infrastructure funding that appreciates the value of maintaining community engagement between funded studies is critical to the research enterprise that values translating research findings into generalizable care models for patients in the community. �

Political participation and sustainability: reflections on a research-intervention with youngs in Cearas’s semi-arid region

Directory of Open Access Journals (Sweden)

Domingos Arthur Feitosa Petrola

2018-02-01

Full Text Available Participating socially and politically in the country's life still is a huge democratic challenge, especially when it concerns Brazilian youth. This research therefore sought to understand the social and political participation of young people in the semi-arid region, analyzing their relations with sustainability. With a qualitative nature, it was developed between May and August of 2014 with a group of subjects, with 15 to 30 years old, members of a non-governmental organization in the city of Arneiroz, countryside of the State of Ceara. The type of research is expressed in the research-intervention which assumes a political and methodological feature. The Freirean Culture Circles were also used as a "place-instruments" of data collection. By the results, it was observed that young people have demonstrated that, despite recognizing the importance of acting and assuming a political role at the transformation of reality through participation mechanisms, they do not feel invited to occupy this place given the traditional and technocratic model of social control and, therefore, they show little interest in effective participatory action. It is urgent to elaborate methodologies that promote and reach to a committed and critical participation, structured through an ideal of sustainable and ethical public policies, stimulating more creative forms of emancipation.

The HRQoL of Chinese patients undergoing haemodialysis.

Science.gov (United States)

Yu, Hui-Dan; Petrini, Marcia A

2010-03-01

With the transition from infectious disease and acute illness to chronic disease and degenerative illness as leading causes of death, health-related quality of life has become an important aspect in assessing the burden of chronic disease. The quality of life of haemodialysis patients has been studied extensively; however, very limited research using exploratory descriptive design has been carried out in this area in China. The aim of this study was to explore health-related quality of life of end-stage renal disease patients undergoing haemodialysis in China. This study used the qualitative research design approach. A semi-structured, in-depth interview was conducted with 16 haemodialysis patients in two hospitals using Colaizzi's phenomenological method to transcribe and analyse the data. The results of this study showed that dialysis patients show improvement in physical competence, but they also experienced emotional instability and psychological distress, financial burdens, inadequate disease knowledge and less social support which influenced their quality of life. To optimise the patients undergoing dialysis health-related quality of life, support of psycho-social-economical aspects should be enhanced. Health care providers should give haemodialysis patients thorough health education, individualised psychological and emotional intervention and adequate social support to optimise health-related quality of life.

Development of the Oxford Participation and Activities Questionnaire: constructing an item pool

Directory of Open Access Journals (Sweden)

Kelly L

2015-05-01

Full Text Available Laura Kelly, Crispin Jenkinson, Sarah Dummett, Jill Dawson, Ray Fitzpatrick, David Morley Health Services Research Unit, Nuffield Department of Population Health, University of Oxford, Oxford, UK Purpose: The Oxford Participation and Activities Questionnaire is a patient-reported outcome measure in development that is grounded on the World Health Organization International Classification of Functioning, Disability, and Health (ICF. The study reported here aimed to inform and generate an item pool for the new measure, which is specifically designed for the assessment of participation and activity in patients experiencing a range of health conditions. Methods: Items were informed through in-depth interviews conducted with 37 participants spanning a range of conditions. Interviews aimed to identify how their condition impacted their ability to participate in meaningful activities. Conditions included arthritis, cancer, chronic back pain, diabetes, motor neuron disease, multiple sclerosis, Parkinson's disease, and spinal cord injury. Transcripts were analyzed using the framework method. Statements relating to ICF themes were recast as questionnaire items and shown for review to an expert panel. Cognitive debrief interviews (n=13 were used to assess items for face and content validity. Results: ICF themes relevant to activities and participation in everyday life were explored, and a total of 222 items formed the initial item pool. This item pool was refined by the research team and 28 generic items were mapped onto all nine chapters of the ICF construct, detailing activity and participation. Cognitive interviewing confirmed the questionnaire instructions, items, and response options were acceptable to participants. Conclusion: Using a clear conceptual basis to inform item generation, 28 items have been identified as suitable to undergo further psychometric testing. A large-scale postal survey will follow in order to refine the instrument further and

Associations between relationship support and psychological reactions of participants and partners to BRCA1 and BRCA2 testing in a clinic-based sample.

Science.gov (United States)

Manne, Sharon; Audrain, Janet; Schwartz, Marc; Main, David; Finch, Clinton; Lerman, Caryn

2004-12-01

Despite the potential importance of communication about genetic testing between test participants and their significant others, little is known about social support and communication between women undergoing BRCA1 and BRCA2 testing and their partners. The aims of this longitudinal study were to examine communication about genetic testing during and following testing and to evaluate whether communication is associated with psychological distress reported by test participants and their partners. Participants were 153 women who were undergoing genetic testing and 118 partners of women undergoing testing. Relationship communication and distress were evaluated at the time of pretest education and 6 months postdisclosure. Overall, the decision to undergo testing was discussed by the majority of test participants and partners, and most couples felt their partners were supportive. Most women disclosed their results to their partners. Longitudinal analyses suggested that less support and protective buffering were associated with greater distress 6 months postdisclosure among test participants, whereas lower comfort in sharing concerns and partner support were associated with lower distress 6 months postdisclosure among partners. The results of this study suggest that the majority of couples respond supportively during the test experience, but for a small subset of couples the process can strain the relationship. Partner support during this process is important, particularly for test participants dealing with an uninformative test result.

Effects of Student Participation in Decision Making at School. A Systematic Review and Synthesis of Empirical Research

Science.gov (United States)

Mager, Ursula; Nowak, Peter

2012-01-01

This article reviews empirical research on the effects of student participation in school decision-making processes. Out of 3102 searched citations, a total of 32 publications met the inclusion criteria. The qualitative analyses employed in this review yielded a typology of student participation, a categorisation of the diverse effects of student…

The effects of high-load strength training with protein- or nonprotein-containing nutritional supplementation in patients undergoing dialysis

DEFF Research Database (Denmark)

Mølsted, Stig; Harrison, Adrian Paul; Eidemak, Inge

2013-01-01

or a nonprotein drink after every training session. MAIN OUTCOME MEASURE: Muscle strength and power were tested using the good strength equipment and the leg extensor power rig. Physical performance and function were assessed using a chair stand test and the Short Form 36 questionnaire. Muscle fiber type size......OBJECTIVE: The aim of this study was to investigate the effects of high-load strength training and protein intake in patients undergoing dialysis with a focus on muscle strength, physical performance, and muscle morphology. DESIGN: This was a randomized controlled study conducted in three dialysis...... centers. SUBJECTS: Subjects for the study included 29 patients undergoing dialysis. INTERVENTION: The participants went through a control period of 16 weeks before completing 16 weeks of strength training. Before the training period, the participants were randomly assigned to receive a protein...

Implementing community-based provider participation in research: an empirical study

Science.gov (United States)

2012-01-01

Background Since 2003, the United States National Institutes of Health (NIH) has sought to restructure the clinical research enterprise in the United States by promoting collaborative research partnerships between academically-based investigators and community-based physicians. By increasing community-based provider participation in research (CBPPR), the NIH seeks to advance the science of discovery by conducting research in clinical settings where most people get their care, and accelerate the translation of research results into everyday clinical practice. Although CBPPR is seen as a promising strategy for promoting the use of evidence-based clinical services in community practice settings, few empirical studies have examined the organizational factors that facilitate or hinder the implementation of CBPPR. The purpose of this study is to explore the organizational start-up and early implementation of CBPPR in community-based practice. Methods We used longitudinal, case study research methods and an organizational model of innovation implementation to theoretically guide our study. Our sample consisted of three community practice settings that recently joined the National Cancer Institute’s (NCI) Community Clinical Oncology Program (CCOP) in the United States. Data were gathered through site visits, telephone interviews, and archival documents from January 2008 to May 2011. Results The organizational model for innovation implementation was useful in identifying and investigating the organizational factors influencing start-up and early implementation of CBPPR in CCOP organizations. In general, the three CCOP organizations varied in the extent to which they achieved consistency in CBPPR over time and across physicians. All three CCOP organizations demonstrated mixed levels of organizational readiness for change. Hospital management support and resource availability were limited across CCOP organizations early on, although they improved in one CCOP organization

The CAMPARE Program:A New Model Promoting Minority Participation in Astronomy Research and Education

Science.gov (United States)

Rudolph, Alexander L.; Impey, C. D.; Bieging, J. H.; Phillips, C. B.; Tieu, J.; Povich, M. S.

2014-01-01

The California-Arizona Minority Partnership for Astronomy Research and Education (CAMPARE) program represents a new and innovative kind of research program for undergraduates: one that can effectively carry out the goal of recruiting qualified minority and female students to participate in Astronomy and Planetary Science research opportunities, while mentoring them in a way to maximize the chance that these students will persist in obtaining their undergraduate degrees in STEM fields, and potentially go on to obtain their PhDs or pursue careers in those fields. The members of CAMPARE comprise a network of comprehensive universities and community colleges in Southern California and Arizona (most of which are minority serving institutions), and four major research institutions (University of Arizona Steward Observatory, the SETI Institute, and JPL/Caltech). Most undergraduate research programs focus on a single research institution. By having multiple institutions, we significantly broaden the opportunities for students, both in terms of breadth of research topics and geographical location.

Participatory research, people with intellectual disabilities and ethical approval: making reasonable adjustments to enable participation.

Science.gov (United States)

Northway, Ruth; Howarth, Joyce; Evans, Lynne

2015-02-01

The aim of this paper is to explore how making reasonable adjustments to the process of securing ethical approval for research can facilitate the meaningful involvement of people with intellectual disabilities as members of a research team. This is achieved through critical reflection upon the approach taken within one participatory research study whose objective was to explore how people with intellectual disabilities understand abuse. Internationally participatory research studies (in which active involvement of community members in all stages of the research process is sought) are becoming increasingly common in the context of health care and, more specifically, within research involving people with intellectual disabilities. However, whilst it is acknowledged that participatory research gives rise to specific ethical challenges, how (or if) involvement in securing ethical approval is facilitated, is not discussed in most research reports. The significance of this paper is that it seeks to address this gap by exploring how meaningful participation can be promoted by making reasonable adjustments. Within the study, the research team worked in collaboration with the ethics committee to identify potential barriers that could prevent the participation of members of the research team who had intellectual disabilities. Reasonable adjustments (such as redesigning forms) were made to the processes involved in securing ethical approval. This study demonstrated that it is possible to ensure that ethical standards are upheld and the requirements of ethics committees met whilst also facilitating the meaningful involvement of people with intellectual disabilities. The reasonable adjustments approach explored within this paper can be translated into the context of clinical practice: making changes to the way that services are delivered can promote greater involvement of people with intellectual disabilities in their own health care. © 2014 John Wiley & Sons Ltd.

Coagulation management in patients undergoing neurosurgical procedures.

Science.gov (United States)

Robba, Chiara; Bertuetti, Rita; Rasulo, Frank; Bertuccio, Alessando; Matta, Basil

2017-10-01

Management of coagulation in neurosurgical procedures is challenging. In this contest, it is imperative to avoid further intracranial bleeding. Perioperative bleeding can be associated with a number of factors, including anticoagulant drugs and coagulation status but is also linked to the characteristic and the site of the intracranial disorder. The aim of this review will be to focus primarily on the new evidence regarding the management of coagulation in patients undergoing craniotomy for neurosurgical procedures. Antihemostatic and anticoagulant drugs have shown to be associated with perioperative bleeding. On the other hand, an increased risk of venous thromboembolism and hypercoagulative state after elective and emergency neurosurgery, in particular after brain tumor surgery, has been described in several patients. To balance the risk between thrombosis and bleeding, it is important to be familiar with the perioperative changes in coagulation and with the recent management guidelines for anticoagulated patients undergoing neurosurgical procedures, in particular for those taking new direct anticoagulants. We have considered the current clinical trials and literature regarding both safety and efficacy of deep venous thrombosis prophylaxis in the neurosurgical population. These were mainly trials concerning both elective surgical and intensive care patients with a poor grade intracranial bleed or multiple traumas with an associated severe traumatic brain injury (TBI). Coagulation management remains a major issue in patients undergoing neurosurgical procedures. However, in this field of research, literature quality is poor and further studies are necessary to identify the best strategies to minimize risks in this group of patients.

Specialist nurses’ perceptions of inviting patients to participate in clinical research studies: a qualitative descriptive study of barriers and facilitators

Directory of Open Access Journals (Sweden)

Caroline French

2016-08-01

Full Text Available Abstract Background Increasing the number of patients participating in research studies is a current priority in the National Health Service (NHS in the United Kingdom. The role of specialist nurses in inviting patients to participate is important, yet little is known about their experiences of doing so. The aim of this study was to explore the perceptions of barriers and facilitators held by specialist nurses with experience of inviting adult NHS patients to a wide variety of research studies. Methods A cross-sectional qualitative descriptive study was conducted between March and July 2015. Participants were 12 specialist nurses representing 7 different clinical specialties and 7 different NHS Trusts. We collected data using individual semi-structured interviews, and analysed transcripts using the Framework method to inductively gain a descriptive overview of barriers and facilitators. Results Barriers and facilitators were complex and interdependent. Perceptions varied among individuals, however barriers and facilitators centred on five main themes: i assessing patient suitability, ii teamwork, iii valuing research, iv the invitation process and v understanding the study. Facilitators to inviting patients to participate in research often stemmed from specialist nurses’ attitudes, skills and experience. Positive research cultures, effective teamwork and strong relationships between research and clinical teams at the local clinical team level were similarly important. Barriers were reported when specialist nurses felt they were providing patients with insufficient information during the invitation process, and when specialist nurses felt they did not understand studies to their satisfaction. Conclusion Our study offers several new insights regarding the role of specialist nurses in recruiting patients for research. It shows that strong local research culture and teamwork overcome some wider organisational and workload barriers reported in

Specialist nurses' perceptions of inviting patients to participate in clinical research studies: a qualitative descriptive study of barriers and facilitators.

Science.gov (United States)

French, Caroline; Stavropoulou, Charitini

2016-08-11

Increasing the number of patients participating in research studies is a current priority in the National Health Service (NHS) in the United Kingdom. The role of specialist nurses in inviting patients to participate is important, yet little is known about their experiences of doing so. The aim of this study was to explore the perceptions of barriers and facilitators held by specialist nurses with experience of inviting adult NHS patients to a wide variety of research studies. A cross-sectional qualitative descriptive study was conducted between March and July 2015. Participants were 12 specialist nurses representing 7 different clinical specialties and 7 different NHS Trusts. We collected data using individual semi-structured interviews, and analysed transcripts using the Framework method to inductively gain a descriptive overview of barriers and facilitators. Barriers and facilitators were complex and interdependent. Perceptions varied among individuals, however barriers and facilitators centred on five main themes: i) assessing patient suitability, ii) teamwork, iii) valuing research, iv) the invitation process and v) understanding the study. Facilitators to inviting patients to participate in research often stemmed from specialist nurses' attitudes, skills and experience. Positive research cultures, effective teamwork and strong relationships between research and clinical teams at the local clinical team level were similarly important. Barriers were reported when specialist nurses felt they were providing patients with insufficient information during the invitation process, and when specialist nurses felt they did not understand studies to their satisfaction. Our study offers several new insights regarding the role of specialist nurses in recruiting patients for research. It shows that strong local research culture and teamwork overcome some wider organisational and workload barriers reported in previous studies. In addition, and in contrast to common practice